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- TCHP Chemo Regimen
By Contributing Editor, Madhumitha Sabhanayagam TCHP Chemo Side Effects - What can we do? When breast cancer first entered the spotlight, the most talked-about subject, other than cancer itself, was chemotherapy. Chemotherapy, though sometimes not the most common way to treat breast cancer, is often the first option that jumps into most people’s minds, quickly followed by concerns of hair loss. The side effects of chemotherapy are appropriately notorious. Many of you have experienced these side effects first-hand and the toll it takes, not only on your person but also on your mental and emotional health. In recent days, I have come across several survivors discussing the aggressive side effects of the TCHP chemotherapy regimen for breast cancer treatment. TCHP Regimen TCHP is made up of four different chemotherapy drugs. TCHP drugs target cancer cells or slow down the growth of pre-existing cancer cells and include: T - Taxotere (Docetaxel) C - Carboplatin (Paraplatin) H- Herceptin (Trastuzumab) P- Perjeta (Pertuzumab) TCHP chemotherapy is usually administered before (to shrink the tumor) or after surgery (to eliminate any rogue cancer cells). The entire chemo regimen is designed to be given in several cycles, and treatment can last anywhere from 5 to 6 months. Follow-up medications, treatments, and check-ups may all be necessary depending on each individual’s treatment path. TCHP Side Effects Because of the four-way combination of the drugs, the regimen presents a slew of side effects that can wreak havoc on an individual and their day-to-day activities. Some of the common chemo side effects include: Diarrhea Hair loss Low white blood cells Nausea Fatigue Vomiting Anemia Upset stomach Constipation Decreased heart function So what causes TCHP to have side effects? The chemotherapy's aggressiveness in attacking cancer cells can also harm normal cells. For example, it may attack the cells that stimulate hair growth or the cells that release the hormone that stimulates hunger. This results in hair loss and loss of appetite. TCHP Chemo Experience The most impactful side effect for most TCHP chemo survivors is weight loss. The treatment takes a toll on your appetite and the ability to find anything appetizing. Nausea is constant, and if you do get hungry, food tastes absolutely abhorrent. Many survivors experience drastic weight loss and have little energy to participate in day-to-day activities. It is important to try to consume calories however possible; consider nut butters for a great high-protein and calorie-dense option. Ask your oncology team if they can refer you to a nutritionist as well if you are having a tough time eating enough food. Though TCHP side effects are significant, there is light at the end of the tunnel for patients. Oncology teams are investing more time and effort to reduce the severity of side effects. For example, to combat chemotherapy-induced hair loss, there is a new method called scalp cooling. Patients can wear a mask during treatment that cools the scalp and minimizes hair-cell damage. Though relatively new, some oncology centers have seen success with scalp cooling, as well as one of our very own SBC members, who shares her experience with cold caps on our podcast Breast Cancer Conversations . Chemotherapy Diet Restrictions The lack of appetite, nausea, and continuous vomiting can result in dehydration and loss of protein in the body. When experiencing such symptoms, drinking plenty of fluids becomes extremely important. Water, electrolytes, and soup are great sources of hydration. It is best to avoid strong flavors that could trigger nausea; prioritize simple-tasting (bland, unfortunately) food. Nausea-inducing foods include spicy, greasy, fatty, and high-sugar foods. For some chemotherapy patients, ramen, oatmeal, lemons, sour patches, and apple sauce are the only foods they can eat and keep down. Try eating several small meals throughout the day to avoid large meals that may be overwhelming while undergoing TCHP chemotherapy. Doctors advise conscious protein inclusion into chemotherapy patients' diets. Focus heavily on milk or a plant-based and protein-rich alternative, eggs, beans, and cheese, as they provide the protein needed to replace the cells you may have lost during treatment. Check out tips on managing chemo side effects and our recommendations on vitamin D and calcium . Emotional Effects of Chemotherapy Emotional and psychological effects are evident when undergoing TCHP chemotherapy. Bouts of helplessness and extreme depression are normal experiences for patients. If this is you, it is important to note that you are not alone in experiencing these effects. A good way to combat psychological decay is to invest in therapy and to assert conscious control of your psychological well-being. Feeling out of control is the biggest stressor for most cancer survivors. Therapy can take a variety of forms, including: Speaking with a counselor or social worker Taking a walk with a friend or Engaging in light yoga or other exercises Breathing exercises at home No matter what form your therapy takes, it's important to carve out time for yourself, even during TCHP chemotherapy treatment. To be in charge of all the knowledge your oncology team presents to you, have your medications and aid tools ready to combat the side effects of TCHP. At the same time, ensure that you still bring a sense of normalcy to your life by engaging in hobbies and activities that serve as a pleasant distraction. Battling cancer is a rough and rarely straightforward path filled with ups, downs, and several hurdles for patients to overcome. Fortunately, some tools can help aid patients along their journey. Many support groups and forums at local oncology centers and online offer great advice and programs to help soften the blow of cancer. Voice your concerns and do not be afraid to be heard. TAKE UP SPACE and BE SEEN. Do not suffer alone..
- Soy Estrogen Myth: Is It Good or Bad To Consume Soy?
By Jessica Wise Disclaimer: This post is not intended to be taken or received as nutritional advice nor is the author able to offer nutritional advice. Each patient who is interested in statements made herein should consult with a qualified medical professional to learn more. Soy foods are naturally cholesterol-free, low in saturated fat, and high in fiber. In many ways, soy foods are an excellent source of protein and a great alternative to red or processed meat; however, there is conflicting information regarding the potential effect of soy consumption on breast cancer development. While some experts emphasize the beneficial effects of soy foods, others believe soy may increase a person’s risk of developing breast cancer. Let us begin by understanding why this might be. Phytoestrogens and Breast Cancer Natural soy foods contain phytoestrogens, plant-based estrogen compounds. Since estrogen is linked to certain types of hormonal breast cancer, many individuals fear that soy can increase their risk for breast cancer development. There have been several research studies conducted to assess the association between soy consumption and breast cancer development; animal studies have primarily established a positive correlation between soy consumption and breast cancer, but human population studies have not produced this same result. Soy foods are a staple in traditional Asian diets, making the intake of soy foods across the lifespan of Asian men and women much higher than that of American men and women. Recent studies have tried to understand the potential effect of soy consumption on breast cancer development in Asian women, and the evidence does not indicate a detrimental effect. In fact, the evidence points to a beneficial effect; consumption of soy foods may lead to a decreased risk of breast cancer among Asian and Asian American women. In the US, soy consumption often comes from soy additives in foods or processed soy foods. Processed foods are known to increase a person’s risk for cancer, so perhaps the focus should shift to prioritizing whole soy foods like edamame and tofu. For those concerned about eating soy foods and their risk of breast cancer development, there is no need to add soy to your diet. Like any food, consuming soy in moderation is important. The following is a list of phytoestrogen foods that are healthy in the unprocessed state: Tofu Tempeh Edamame Linseed (flax) Sesame seeds Barley Lentils Alfalfa Mung beans Apples Carrots References: Korde, L. A., Wu, A. H., Fears, T., Nomura, A. M. Y., West, D. W., Kolonel, L. N., Pike, M. C., Hoover, R. N., & Ziegler, R. G. (2006). Childhood soy intake and breast cancer risk in Asian-American women. Cancer Epidemiology and Prevention Biomarkers , 15 (12 Supplement), B163–B163. Phytoestrogens: Benefits, risks, and food list . (n.d.). Retrieved June 11, 2020, from https://www.medicalnewstoday.com/articles/320630 Ziaei, S., & Halaby, R. (2017). Dietary Isoflavones and Breast Cancer Risk. Medicines , 4 (2).
- What is Oncotype DX?
By Abigail Johnston When I was initially diagnosed with breast cancer in 2017, we thought I was Stage II. In light of that information, which we now know was erroneous, I chose to do a lumpectomy, and once the tumors were removed, my doctor recommended that we have them tested to see if chemotherapy was right for me. My mother, at that time, was a 14-year breast cancer survivor, and so this was news to all of us. As soon as my doctor suggested it, I did some research. I discovered that the Oncotype Dx test provides a breast recurrence score. They explain it this way on their website : “The Oncotype DX Breast Recurrence Score test provides a genomic-based, comprehensive, individualized risk assessment for early-stage invasive breast cancer in adjuvant and neoadjuvant settings. “ This score is recognized now as the standard of care by American Society of Clinical Oncology (ASCO®), the National Comprehensive Cancer Network (NCCN®), the St. Gallen Consensus panel, the National Institute for Health Care Excellence (NICE), the European Society for Medical Oncology (ESMO) and the German Association of Gynecological Oncology (AGO). That’s a lot of really smart and really dedicated people determining that this is a good test. What is the TAILORX Study? Further, the testing was validated by the TAILORx study. The Oncotype Dx website describes the study in this way: “The landmark TAILORx trial enrolled 10,273 patients from over 1,000 sites who were candidates for adjuvant chemotherapy as per NCCN Guidelines and monitored their 9-year outcomes. The trial investigated the clinical utility of Oncotype DX Breast Recurrence Score test to confidently predict the patient population who will substantially benefit from chemotherapy. Patients with Recurrence Score (RS) results 0-25 showed excellent outcomes when treated with endocrine therapy alone, while patients with RS results 26-100 are known to have significant chemotherapy benefit.2 TAILORx also showed that standard clinical risk features alone are not sufficient to determine chemotherapy benefit - often leading to overtreatment or undertreatment of patients. Only the Oncotype DX Breast Recurrence Score test provides clarity for adjuvant treatment decisions.” My then medical oncologist explained it this way — he said, “We have 20 years of tumors stored in a warehouse and we’ve studied their characteristics to create a database. This database then tells us the details of each person’s disease progression by looking at the genomics of each cell.” Basically, the history and experiences of more than twenty (20) years of the treatment of breast cancer give us some indications of how cancer even now might behave, and if chemo is indicated. The TAILORx trial was still going on at that time (in 2017,) and the scores were validated even more after I underwent the testing. Patients who are diagnosed with early-stage, ER+, HER2- breast cancer, whether node positive or negative, are eligible for this test. I checked all the boxes for this test, and off my tumor went after they’d cut it out of me to be tested. Oncotype vs Mammoprint One difference between the Oncotype DX testing and Mammaprint (their competitor) is that while Mammaprint gives a yes or no answer to the likelihood of chemo helping, the Oncotype DX test provides a numerical value that is either in the definitely no help range, the gray area range, or the definitely yes chemo would help range. My then medical oncologist preferred the more detailed information of the Oncotype Dx test because it allowed him to apply his experience and clinical judgment to the result. Oncoptype of 27 My result was 27, on the high end of the gray area. When we sat down with my then medical oncologist to discuss the next steps, he shared with us that in his experience, anyone with a score over 25 could benefit from chemo. His personal experience has been validated by the TAILORx trial. He left the decision to do or not to do chemo up to us, but the report we received showed us the difference in the danger of recurrence if I didn’t get chemo and if I did. The difference was over 10 percentage points, and my husband and I decided that it would be best to proceed with chemo even though we’d been hoping to avoid it. And thank God we did. Starting Chemotherapy It was at my first chemo appointment that someone in my medical oncologist’s office, by mistake, checked the box for my tumor markers to be tested. Since the tumor markers came back extremely high, I underwent more testing, and we discovered that I’d actually been Stage IV from the beginning, and the pain/limp I had in my right leg was a 5 cm tumor that was threatening to shatter my right femur. My then medical oncologist and my current medical oncologist have not been able to explain why the oncotype dx score wasn’t in the definitely would benefit from chemo range since the cancer had already spread through my blood to take up residence in my bones. That stumped the various tumor boards too. The bottom line is that no test is 100% accurate and specific to each individual person. Yet, the additional information provided by the tests we have available assists the doctors in making the best possible recommendations for the patient to then decide what is best for him/her. Knowledge truly is power, and the more information, the more knowledge, the better each team can determine the best treatment for the individual patient. Check out the podcast with Abigail on Breast Cancer Conversations More articles by Abigail: Understanding Piqray Germline Mutations and the ATM Gene About the Author: In 2017, at the ripe old age of 38, while living in Orlando, Florida, I was diagnosed with Stage IV Metastatic Breast Cancer after feeling a lump in my left breast while tandem nursing my boys, who are now 7 and 5. The summer of 2017 was a rollercoaster of emotions as I faced four body and life-changing surgeries amidst chemo and radiation. Once the whirlwind had settled a bit and I’d completed transitioning my clients and staff at my law firm to another law firm, my husband, two boys and I moved to Miami to live with my family. Looking back, I’m astonished at how much has changed, how much we have overcome as a family, and how everyone has adjusted. While I don’t actively practice law, I use my education and training in a variety of ways for the breast cancer community, advocating for patients and thrivers. I have started my own non-profit, Connect IV Legal Services, where I recruit lawyers to do pro bono work for Stage IV patients. I’m also active in many local and national organizations, volunteering and adding my voice to educate and persuade others to connect with and help my community. You can connect with me by checking out my blog, www.NoHalfMeasures.blog , or following me on Twitter , Instagram , Facebook , LinkedIn , or YouTube ! - Abigail Johnston
- Breast Cancer and Shingles
Is there a relationship? Studies indicate that there may be a correlation between cancer and the shingles virus. Talk about one’s body multi-tasking in a most adversarial way! During a recent survivingbreastcancer.org virtual meet-up , a number of the community members stated they had developed shingles. The conversation stimulated significant follow-up inquiries, and the topic is worth a deeper look than anecdotal evidence. What We Do Know Shingles is caused by the same virus that causes chickenpox, also known as the varicella zoster virus. Once a person contracts chickenpox, the virus may remain in their body and become inactive. Years later, the virus can reactivate, causing shingles (herpes zoster). According to the U.S. Centers for Disease Control and Prevention, nearly 30% of people in the United States will develop shingles, and about 1 million cases occur in the country each year. Newly diagnosed cancer patients may be at increased risk for this painful skin condition. Patients with a solid tumor in the breast had a 30% higher risk of shingles than people without cancer. “Among patients with solid tumors, the greater risk was largely associated with receiving chemotherapy treatment, rather than with the cancer itself” (Jiahui Qian, Journal of Infectious Diseases). Can Shingles Cause Breast Cancer? The shingles virus has never been formally connected to cancer, but it has the potential to be confused with rashes that are linked with cancer cells. Shingles can develop on or near the breast, tending to favor the torso. When presented on the breast, symptoms typically follow this progression: Very sensitive skin, often accompanied by pain or numbness A red rash develops within a week The rash develops blisters The blisters break to form scabs After several weeks, the blisters heal Nerve pain continues for up to one year Can Cancer Patients Use the Shingles Vaccine? Vaccines are available for treating shingles, but due to a lack of data, these vaccines are not yet recommended for use in the cancer patient group. Also in development is a shingles vaccine that uses an inactivated form of the virus. These advances suggest that vaccines show promise as a way to prevent shingles and its complications in cancer patients. As always, we recommend that those diagnosed with breast cancer consult their oncologist at the first sign of shingles. Shingles Vaccine Shingrix ‘Important’ For People With Cancer The shingles vaccine is recommended for adults older than 50 years; however, Zostax, a live-virus vaccine, may not be suitable for patients with immunodeficiency or immunosuppression, including those with cancer. The vaccine combines glycoprotein E with an adjuvant system that enhances immunologic response. Read More. Herpes Zoster in Breast Cancer: A Case Report A 65-year-old female patient with breast pain, severe edema, irritation, and itching in the left breast was admitted to the emergency department. This patient had a history of breast cancer four years previously, which metastasized to the lungs and lymph nodes in her neck. This patient was treated with radiotherapy and chemotherapy, and a total mastectomy for several years. The breast often appeared swollen, erythematous and red, or inflamed. Read More. Shingles More Likely to Develop in People With Cancer The large prospective study examined the risk of shingles before and after a cancer diagnosis and across a range of cancer types among more than 240,000 adults in Australia between 2006 and 2015. The risk for shingles was 30 percent higher in those with solid organ cancers, such as cancer located in the lung, breast, prostate, or other organ, compared with someone without cancer. Read More. Shingles Prevention In the United States, Shingrix was approved by the Food and Drug Administration (FDA) in 2017 and is preferred to Zostavax. Studies suggest that Shingrix offers protection against shingles for more than five years. Shingrix is a nonliving vaccine made of a virus component. It is given in two doses, with two to six months between doses. Shingrix is approved and recommended for people age 50 and older, including those who've previously received Zostavax or had shingles. Read More.
- Five Simple Yoga Stretches to Regain Mobility After Your Mastectomy
By Guest Blogger, Amy Hardwick What if you could begin to regain your range of motion in just five minutes a day? Have you been cleared by your doctor to begin gentle movement but not sure where to begin? Try these 5 simple stretches every day to get started. Where Do I Begin? When movement is uncomfortable, it can be hard to motivate ourselves to do it consistently. Your incision sites are tender and the scar tissue is limiting your range of motion. Add to that the fact that you have likely been resting and recovering, which often means extended periods of time sitting and lying down. In the wise words of Meryl Streep, “Start by starting.” The task of healing may at times seem daunting. Start small. Be consistent and celebrate each step forward along the way. Trust that your body is resilient. The simple truth is that repetition creates results. While you may not be able to carve out longer chunks of time every day, you can likely find five minutes to practice these yoga stretches to gain back your range of motion over time. Before you begin, be sure you are cleared by your doctor to do gentle movement. Listen to your body and honor where it is at each day and each step of the process. Snow Angels Just like when you were a kid! Lie on your back and stretch your legs out long (or support under your knees with a pillow). Begin with your arms by your sides and your palms facing up to the ceiling. Keeping your arms connected to the ground, inhale and move your arms up overhead. As you exhale, sweep your arms back by your sides...just like making snow angels, you will likely feel a stopping point along the way. You want to come to that point but not push past to where there is pain. Repeat with palms facing down to the ground and palms facing in towards your sides. Backstroke Stay lying on your back with your arms by your sides. This time, as you inhale, reach one arm up towards the ceiling and then overhead. As you exhale, lower the arm back by your side. Repeat back and forth with each arm for one minute. Like snow angels, you will likely reach a resistance point. Go to that but not past that. Heart Melting Pose Begin in Table Top Position (hands and knees) with your shoulders stacked over your hands and your hips stacked over your knees. Keep your hips stacked there and walk your hands forward until your forehead comes to, or towards, the ground. A block or a pillow for support under your forehead can be great if the mat feels really far away! This looks a lot like child’s pose but with your hips over your knees instead of back to your heels. Shoulder Opener with a Strap You can do this one seated or standing and you will need a yoga strap or any type of belt or scarf that is fairly long. Hold one end of the strap in each hand and take your arms out to a wide V-shape in front of you. As you inhale lift your arms overhead and as you exhale reach your arms behind you. Repeat back to front and front to back a few times. Go slowly and move with your breath. You want there to be tension on the strap and feel the end range of motion without pain. Fallen Angel at the Wall Stand with the right side of your body along the wall. Stretch your right arm straight back from your shoulder with your palm pressing into the wall. You will likely feel the stretch just by doing that, but if not begin to turn your chest away from the wall. Keep your hand active as you press it into the wall. Repeat for the left side. Go slowly, be patient, listen to your body, and celebrate each small step forward. Yoga can help to heal not only your body but your relationship to it as well. Amy Hardwick is a yoga teacher and Reiki master who specializes in creating online content to support people during cancer treatment and recovery so they can practice from the comfort of their own home. She is an E-RYT that is passionate about bringing the tools of yoga outside of the traditional studio environment to support integrative cancer care. A student at heart, she has trained with Memorial Sloan Kettering Cancer Center and Inner Peace Yoga Therapy. Her classes and programs are down-to-earth, and offer practical tools that are tailored specifically for people in active treatment and survivors looking to recover and rebuild. For more information on yoga for cancer care programs: www.amyhardwick.com
- Breast Cancer and Sun Protection
Spending time outdoors can offer many physical, mental, and emotional benefits for anyone going through breast cancer. Enjoying time in nature and getting daily sunlight offers the chance to disconnect from the world, diminish stress and anxiety, and regroup and refocus. While sunlight is a great source of vitamin D and helps stave off depression, it's crucial to remember the importance of sun protection year-round, not just during the summer. Monitoring UVB (Ultraviolet B radiation) exposure is especially important if you are undergoing chemotherapy or radiation treatment for cancer. Many chemotherapy medications and immunotherapies can increase sun sensitivity, also referred to as photosensitivity, which can leave skin more susceptible to burning. Common chemotherapy drugs known to cause photosensitivity include Gemzar (gemcitabine), Adriamycin (doxorubicin), and Taxotere (docetaxel). Avoid sun exposure as much as possible while undergoing chemotherapy and up to two months after. Like chemotherapy, radiation therapy can also leave patients vulnerable to the sun’s rays. The skin of the area being treated with radiation therapy can have a propensity to burn, and this area can be vulnerable for years after radiation therapy has ended. It is also important to keep the treated area covered as much as possible. UV-Protective Clothing and Sunscreen Some of Laura's favorite UV protective clothing comes from UV Skinz . Rhonda, the Founder of UV Skinz, lost her 32-year-old husband to skin cancer. Because of this disease, Rhonda and her three boys were determined to help families live sun-safe through education and innovative products. Unprotected sun exposure while receiving chemotherapy or radiation therapy can make you more vulnerable to skin cancer as well, including the most serious form of skin cancer: Melanoma. Melanoma is a type of skin cancer that develops when cells called melanocytes begin growing uncontrollably. Melanoma can be tricky to spot because it may present itself in many different shapes and colors. The good news is that you can protect yourself by doing regular skin checks and using the ABCDEs to monitor any areas that may be concerning. The ABCDEs stand for: A symmetry: If you draw a line halfway through your lesion and the two halves do not match, you should consult your dermatologist. B order: Melanoma borders are usually uneven, scalloped, or notched. C olor: Melanoma usually presents itself in multiple colors, meaning that it could have different shades of brown, tan or black. Melanoma can also be shades of blue, white, or red. D iameter: If the diameter of the mole is greater than 6 millimeters, or the size of a pencil eraser, you should get it checked out by your dermatologist. E volving: Be aware of a spot that is itching, bleeding, crusting, increasing in shape or size, or increasing in elevation. Protecting Yourself The best way to protect yourself from the sun while receiving chemotherapy or radiation therapy is to apply broad-spectrum sunscreen, protecting you from UVA and UVB rays. A high-SPF sunscreen should be applied at least 30 minutes before venturing outside to allow for the sunscreen to absorb into the skin and should be reapplied every 80 minutes or after swimming or sweating. The Environmental Working Group has a great guide on some of the best sunscreens with the least harmful chemicals! You should also try to avoid planning your outdoor activities between the hours of 10 AM and 2 PM, when the UV rays tend to be strongest. Seeking out shade and wearing long layers will also protect you from the sun’s rays. Additionally, wearing a long-brimmed hat can offer protection for your face, ears, and neck. You can also protect your eyes by wearing sunglasses that block both UVB and UVA rays, protecting the thin skin around your eyes and reducing the risk of cataracts. Lastly, avoid tanning beds, especially while undergoing chemotherapy or radiation therapy. Studies have shown that your risk of developing skin cancer goes up by 15% for every four tanning bed visits, and your skin is even more vulnerable when you are in treatment. If you are still craving a healthy glow, opt for a store-bought tanning lotion or have a spray tan done professionally. Content Across The Web Sun Care After Breast Cancer ( Breast Cancer Now ) You may be concerned about the effects of hot weather during and after breast cancer treatment. Breast cancer treatments such as radiation and chemotherapy can make skin much more sensitive to the sun.Take care in the sun by covering your skin and wearing a hat. Use a sunscreen with a high sun protection factor (SPF) and avoid the hottest part of the day (11am–3pm). Read More. Why Skin Exams Must Be Part of Breast Cancer Discussions ( Affiliated Dermatology ) Very few people realize the correlation between breast cancer and skin cancer. Simply put, the diagnosis of one of these cancers significantly increases the risk of the other. While reasons for the association are not completely understood yet, we know there are amplified risk factors that play a role in the connection. Radiation treatments, hormone changes during therapy, a biological or genetic link, and environmental factors may all play a part in the breast/skin cancer connection. Read More. Everything You Need To Know About Melanoma ( Healthline ) Melanoma is a specific kind of skin cancer. It begins in skin cells called melanocytes. Melanocytes produce melanin, the substance that gives your skin color. When melanoma is diagnosed in the early stages, most people respond well to treatment. But when not caught early, it spreads easily to other parts of the body. Read More. Summer Skin Care ( BreastCancer.org ) Sunshine feels great — especially after a long, cold winter. Getting some sun is a good way to improve mood, energy level, and sense of optimism. But too much sun exposure can be dangerous. It can cause skin cancer, cataracts, wrinkles, and painful burns that may permanently damage skin. It can also make side effects of some chemotherapy worse. Read More.
- Osteonecrosis of the Jaw: A Little-Known Side Effect of Breast Cancer Treatment
What is Osteonecrosis of the Jaw? Osteonecrosis of the jaw (ONJ) is a possible side effect of some breast cancer treatments. It is a condition that results in the death of bone tissue in the jaw. ONJ can lead to pain, infection, and exposure of the teeth. Around 2% of breast cancer patients may experience this side effect. The exact cause of Osteonecrosis of the Jaw is not known, but it may be related to a decrease in blood supply to the jawbone. It is most commonly seen in patients who take drugs that belong to a group called bisphosphonates, which are used to reduce bone loss and prevent fractures. Other risk factors include radiation therapy or chemotherapy. The symptoms of Osteonecrosis of the Jaw usually appear four to eight weeks after starting breast cancer treatment. These can include pain or swelling in the mouth, loosened teeth, exposed bone or tissue in the gums, difficulty opening your mouth wide enough for eating or brushing your teeth, unusual bleeding from the gums, and bad breath. What are the Symptoms of ONJ? Symptoms of ONJ include jaw pain, tooth loss, and exposed bone in the mouth. The condition can also make it difficult to eat and speak. The most common symptom of ONJ is pain in the jaw, which can range from mild to severe. Other symptoms include: Swelling or infections around the gums Numbness or tingling in the jaw Jawbone exposure (seen as a hole in the gums) Redness Drainage from wounds Exposed bone Loose teeth Problems chewing or swallowing If you are undergoing cancer treatment and experiencing any of these symptoms, be sure to tell your oncologist or dentist right away. Osteonecrosis of the jaw can be difficult to diagnose, but if you experience any of the above symptoms, it is important to seek medical advice. Your doctor or dentist will likely perform a physical exam and may order X-rays or other imaging tests. What Causes ONJ? ONJ is most commonly seen in patients who have received intravenous bisphosphonate therapy, either as part of their cancer treatment or to prevent osteoporosis. Bisphosphonates are drugs that help to strengthen bones and reduce the risk of fractures. However, in some cases, they can cause the jawbone to deteriorate. ONJ is caused by a reduction in blood flow to the jawbone. This can be the result of cancer treatments that reduce the levels of minerals in the blood, such as bisphosphonates or denosumab. Chemotherapy and radiation therapy can also lead to ONJ. What are Bisphosphonates? Bisphosphonates are a type of drug commonly used to treat bone loss in people with breast cancer. They work by reducing the activity of cells that break down bone, ultimately leading to increased bone density and reduced risk of fractures. Bisphosphonates are typically administered as an injection or intravenous infusion. While there are many benefits to taking these drugs, Osteonecrosis of the Jaw is a rare but possible side effect. Breast cancer patients often take bisphosphonates to lessen the skeletal-related issues that come with metastatic disease and to stop the bone loss caused by adjuvant therapy. Outside of cancer treatment, bisphosphonates have been studied for their potential to directly inhibit breast tumor cell growth and spread. One example of a bisphosphonate is Zometa. Zoledronic acid is a drug that's given to reduce the risk of breast cancer spreading to the bones and other parts of the body. Zometa works by reducing the activity of cells that break down bone, ultimately leading to increased bone density and reduced risk of fractures. Zometa can be administered as an injection or intravenous infusion. What are the Side Effects of Bisphosphonates? Common side effects of bisphosphonates include nausea, vomiting, constipation, diarrhea, and abdominal pain. Bisphosphonates can also cause Osteonecrosis of the Jaw (ONJ). ONJ is a rare but serious condition that causes damage to the jawbone. It is typically caused by a decrease in blood. What is the Risk of Developing ONJ? The risk of developing Osteonecrosis of the Jaw is low, with estimates ranging from 0.3-3%. The risk increases with the duration of therapy and total cumulative dose received. A large phase III randomized study found that receiving 3 to 5 years of bisphosphonate treatment after surgery and chemotherapy for early-stage breast cancer doesn’t improve survival any more than receiving 2 years of bisphosphonate treatment. The study also found that receiving more than 2 years of bisphosphonate therapy increases the risk of Osteonecrosis of the Jaw. It is important to weigh the benefits and risks of taking any drug, including bisphosphonates. If you have breast cancer and are considering taking a bisphosphonate, discuss it first with your oncologist. That being said, the risk of Osteonecrosis of the Jaw is still low and should not be a cause for undue concern. Diagnosing Osteonecrosis of the Jaw ONJ is diagnosed through a combination of medical history, physical examination, and imaging tests. Your doctor will ask about your medical history and any bisphosphonate therapy you've received. They will also perform a physical examination of your mouth and jaw. Imaging tests such as X-rays, CT scans, and MRIs may also be ordered to get a closer look at the Jawbone. How is Osteonecrosis of the Jaw Treated? There is no one-size-fits-all approach to treating ONJ. Your doctor will work with you to develop a treatment plan that meets your individual needs. ONJ is typically treated with a combination of medication and surgery. In some cases, a dental prosthesis (false teeth) may be required. Because ONJ is caused by a lack of blood flow to the jawbone, treatments focus on increasing blood circulation to the area. Oral surgery is typically only recommended if other treatments or medications have not been effective. There are many factors to consider. Antibiotics may also be prescribed to help prevent or treat an infection in the jaw, gums, or tooth. While there is no guaranteed way to prevent ONJ, maintaining good oral hygiene during cancer treatment may help reduce your risk. Questions to Ask Your Oncologist About ONJ Before visiting your oncologist, make note of and consider asking the following questions: What are the risks of taking a bisphosphonate? How can I reduce my risk of Osteonecrosis of the Jaw? How will Osteonecrosis of the Jaw be diagnosed and treated if it occurs? What other treatments or medications can I take to reduce my risk of Osteonecrosis of the Jaw? Are there any alternative treatments available if Osteonecrosis of the Jaw occurs? How will Osteonecrosis of the Jaw affect my quality of life and treatment plan? Conclusion Osteonecrosis of the jaw is a rare but serious side effect that can be caused by bisphosphonate therapy for treating breast cancer. It occurs when there is a reduction in blood flow to the jawbone and can lead to pain, infection, and exposure of the teeth. If you are currently undergoing treatment for breast cancer, be sure to watch for symptoms of ONJ and notify your oncologist or dentist right away if you experience any jaw pain, tooth loss, or exposed bone in the mouth. By catching ONJ early and getting proper treatment, you can help manage this condition and improve your quality of life during and after cancer treatment. If you experience any symptoms of ONJ, it's important to see your doctor right away for an evaluation.
- 9 Early Warning Signs of Breast Cancer You Shouldn’t Ignore
Breast cancer casts a shadow over the lives of countless people across the globe, affecting both the afflicted and their loved ones. The National Breast Cancer Foundation paints a heartrending picture, forecasting that an estimated 316,950 women and 2,800 men will confront the devastating diagnosis of invasive breast cancer in 2025. Diagnosing breast cancer early, before it spreads, greatly amplifies a person’s chances of successful treatments. Early warning signs are crucial in offering a pivotal advantage in early detection and treatment. Continue reading to explore some of the most common warning signs of breast cancer you shouldn’t overlook. Common Breast Cancer Symptoms 1. Lumps in the Breast or Underarm According to the American Cancer Society , one of the most common signs of breast cancer is a new lump in the breast or underarm, including any lump, knot, or hardening of the breast tissue. Lumps are often painless, and not all are cancerous, but they should be reported to a doctor immediately. Regular self-exams can aid in early detection. 2. Change in Breast Size, Shape, or Appearance The National Breast Cancer Foundation notes that a change in the size or shape of the breast could indicate breast cancer, including swelling, thickening, shrinkage, or asymmetry, particularly if it affects only one breast. 3. Nipple Changes Check for any nipple changes , including turning inward, leaking fluid, or scaling or flaking on the nipple or areola, which could be signs of breast cancer. In addition, nipple inversion or retraction can be a sign of breast cancer. It's important to note that not all cases of nipple inversion or retraction indicate cancer. Some people may have naturally inverted nipples due to other benign conditions. 4. Unexplained Breast or Nipple Pain While pain in the breast is commonly associated with menstrual cycles, persistent pain that doesn’t align with the menstrual cycle can be cause for concern. 5. Nipple Discharge Other Than Breast Milk Bloody, yellow, or green fluid, especially when emitting from one nipple, could signal breast cancer. The exception is discharge that occurs while squeezing the nipple, which is likely benign . 6. Swelling Under the Arm Lymph nodes can swell for various reasons, but if you notice swelling in your underarm lymph nodes, promptly report it to your care physician. Swollen lymph nodes are one of the top signs of breast cancer . 7. Changes to Breast Skin Breast skin changes like redness, thickening, or pitting are listed by the American Cancer Society as potential breast cancer signs, warranting immediate medical attention. Additionally, redness or flaky skin in the nipple or breast area can be associated with breast cancer. A rash resembling eczema on the breast could indicate Paget’s disease of the breast , a rare type of breast cancer. See your doctor about any persistent rashes. Though not a common symptom, increased visibility of veins on the breast’s surface can suggest a blockage in a blood vessel caused by a lump or increased blood supply to the breast. It’s a sign that can accompany tumor growth and indicate an underlying issue like breast cancer. 8. Itchy or Irritated Breasts While itchiness can result from various conditions like allergies and dermatitis, continuous itchiness should not be ignored, especially when accompanied by other symptoms. 9. Rapid, Unexplained Weight Loss While not breast-specific, unintentional rapid weight loss can signal metastatic breast cancer , advises the National Cancer Institute. Note any inexplicable weight loss and consult your doctor. Count On Us for Information, Resources, and Support Understanding and recognizing the early warning signs of breast cancer can significantly affect the prognosis and treatment. Early detection can lead to less invasive treatments and higher survival rates. Always consult your doctor if you notice any changes or symptoms, and prioritize regular screenings. Whether you’re newly diagnosed with breast cancer , are navigating survivorship, or are the loved one of someone experiencing breast cancer, you can count on SurvivingBreastCancer.org to keep you informed. We provide educational information to help you better understand symptoms , testing, treatment options , surgery, etc., and podcasts that feature professionals, advocates, and caregivers who share valuable information. Your donations enable SurvivingBreastCancer.org to offer resources and support every day, every month, and every year. Note: This article is designed to provide general information and is not meant to replace professional medical advice. Always discuss your options with your healthcare provider. Learn more: Different Types of Breast Cancer Breast Cancer Risk Factors SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events
- The Optimal Duration and Dosage of Immunotherapies
Research and discussion continue to accelerate among scientists and oncologists regarding the optimal duration and dosage of immunotherapy for cancer patients. Immunotherapy has revolutionized cancer treatment by harnessing the body's immune system to target and attack cancer cells, leading to more durable responses and better outcomes for some patients. Latest Findings in Immunotherapy Research At the recent San Antonio Breast Cancer Symposium (December 2023), two topics that received perhaps the greatest scrutiny and discussion were the optimal duration of immunotherapy treatment and dosage reduction efforts. On December 26, 2023, the Wall Street Journal published an article by Brianna Abbott and Jared S. Hopkins describing how immunotherapies weaponize the immune system to attack tumors. They claim that immunotherapy has extended the lives of people with melanoma, lung, and bladder cancers. Immunotherapies have also proven lucrative for pharmaceutical companies with an estimated global market value of $226.38B in 2024 . However, some patients may be receiving surplus dosages of immunotherapies, exposing them to possible side effects and avoidable costs without risk of recurrence. Preliminary research suggests that lower dosages or shorter treatment times could be sufficient for optimal results, but pharmaceutical companies haven’t funded the studies needed to confirm the findings. How Long Should Your Immunotherapy Treatment Be? While immunotherapy has shown promising results, especially in certain cancer types — including melanoma, lung cancer, breast cancer, and some types of lymphomas — the approach to timing and duration of treatment is still evolving. Oncologists are continuously evaluating and refining treatment strategies based on new research findings and patient outcomes to optimize the benefits of immunotherapy for cancer patients. However, determining the ideal duration or timing to stop or modify immunotherapy remains a topic of exploration and debate. Some key considerations in this area include: Sustained Response : For some patients, continuing immunotherapy beyond the standard duration may sustain the response, preventing cancer recurrence or progression. Long-Term Side Effects : Extended use of immunotherapies can lead to immune-related adverse events, which may affect the patient's quality of life. Balancing treatment efficacy with side-effect management is crucial. Patient-Specific Factors : Response to immunotherapy can vary significantly among individuals. Factors such as tumor type, stage, genetic makeup, and overall health influence the decision-making process. Combination Therapies : Researchers are exploring combinations of immunotherapy with other treatments (like chemotherapy, targeted therapy, or radiation) to optimize effectiveness while potentially minimizing side effects. Biomarkers and Monitoring : Biomarkers are being studied to identify patients who benefit most from continued immunotherapy and those who might safely discontinue treatment without compromising outcomes. Regular monitoring is crucial to detect any signs of disease recurrence. Clinical Trials : Ongoing clinical trials aim to determine the most effective dosing schedules, treatment durations, and combinations of immunotherapies to maximize benefits and minimize risks. In conclusion, while immunotherapy has shown promising results, especially in certain cancer types, the approach to timing and duration of treatment is still evolving. Oncologists are continuously evaluating and refining treatment strategies based on new research findings and patient outcomes to optimize the benefits of immunotherapy for cancer patients.
- Why Does a Breast Cancer Diagnosis Lead to so Many Divorces and Broken Relationships?
At survivingbreastcancer.org , a 501(c)(3) non-profit, we seek to offer community, support, education, and health and wellness assistance for breast cancer survivors and their caregivers. A topic that frequently arises in our community is the issue of partners, boyfriends, girlfriends, fiancés, husbands, family, and friends "divorcing" (literally and figuratively) themselves from the breast cancer diagnosed patient. This divorce/broken relationship rate may run as high as 50% or more, according to breast cancer thriver Abigail Johnston. The reasons are numerous, but selfishness and being overwhelmed, i.e., lack of understanding of the role of a caregiver, appear to be the leading factors. One of our Breast Cancer community guest bloggers eloquently posted the following: “Our relationship started to spiral downward, and very quickly. In fact, deep down inside, I knew as soon as a month after my diagnosis that “forever” wasn’t going to happen. But I held on. Even after he laughed at me and called me pathetic when I had trouble getting into the car a week after my 10-hour mastectomy surgery, with drains distending from my sides, I held on. Even after our fight, because I had to shave my head when my hair wouldn’t stop falling out, I held on. Even after sitting through a 5-hour chemo, crying, because a fight had gotten so bad that he shoved me into the car door, 10 minutes prior to walking through the cancer hospital door, I held on. Even after he told me he would rather not spend New Year's with me because I wouldn’t be any fun due to a chemo infusion I had a few days before, I held on. In retrospect, in the beginning, I do think he cared. However, ultimately, it was too overwhelming for him. Cancer is messy. It’s dark and scary and forces you to face your own mortality. Want to know a secret? It’s like that for you AND the people around you. It is, indeed, something that not everyone can handle, and you know what? That’s okay. However, over the past two years, I’ve learned that I would rather surround myself with people who CAN handle it. I would rather be with a man who understands that I’m worth more than a phone call, two days before a surgery, telling me that he no longer wanted to be in a serious relationship because the past 6 months had been too hard on him and he was too young to be going through such a trying ordeal.” Feelings of Fear and Helplessness When a couple faces an illness like cancer that threatens their entire way of life, there are bound to be feelings of anger, fear, helplessness, bitterness, and exhaustion. While they wade through these feelings, they are also faced with new roles they have to fill (or can’t fill), financial uncertainty, and a complicated future including many trips to the oncologist, surgery, possible overwhelming financial obligations, etc. Partners may struggle with their new roles and feel inadequate—or overwhelmed. If there were underlying problems in a relationship before an illness, the added strain may prove to be too much. As partners face the reality of their mortality, what they really want in life and what they’re willing to give up come into sharp focus. According to recent studies (all credited below CB), it seems like women were less well-supported by their partners than men were while undergoing treatment for serious illnesses. The study found that couples were far more likely to separate if the female partner was the one being treated. The effect of divorce on health risks is also well researched, but less understood is how health, or the lack of it, may affect the risk of divorce. Another study (CB) of older couples finds that marriage is more likely to end in divorce when the wife is ill than when the husband is ill. That study finds the risk of marriage ending in divorce when a spouse falls ill is higher when that spouse is the wife. Illness can stress a marriage in a number of ways. One way that a spouse's illness can stress a marriage is when the healthy spouse is the primary caregiver and may also have to take on sole responsibility for supporting the household. Another stressor can be differences in the quality of care. A third study (CB) found that wives are generally less satisfied with the care they receive from their husbands, probably because - and this applies to older men in particular — men have not been raised to be caregivers in the same way as women and may feel uncomfortable when thrust into the role. Serious illness is a life -or- death experience that can make people stop and think about what is important in their lives. A fourth study (CB) found a significant gender difference in divorce following the illness of a spouse. They were interested in people who were married at the start of the study period, and because they wanted to examine the effect of falling ill during that period, they excluded marriages where a spouse was already sick at the beginning of the study. Age was tied to an increased chance of getting a serious illness, with husbands experiencing higher rates than wives. While the onset of illness in the husband was not linked with a raised chance of divorce, illness in the wife was linked to a 6% higher risk of being divorced before the end of the study period. This was a significant gender difference. A cancer diagnosis brings physical and emotional challenges, requiring both excellent medical care and a strong personal support system. When a couple chooses to divorce or separate during this time, managing the personal loss can present another hurdle. As difficult as this can be, there are strategies that can help you cope. Does the Blame Rest With a Cancer Diagnosis? It can be tempting to blame a separation or divorce on cancer, but most experts agree that it’s far more likely that the stressors related to the disease simply highlight weak areas that already exist within a relationship. The intensity of emotional and physical stress during this time magnifies patterns of behavior within relationships, as couples confront changing roles and responsibilities. The caregiver may need to step up to take over tasks that the patient previously handled, which can be a difficult transition; both partners will need to learn to manage and express feelings of fear, resentment, anger, anxiety and grief that arise; and, financial stressors may develop, especially if the patient is unable to work or if outside help has to be brought in to handle household or childcare. In the end, solid marriages may even be further strengthened by the true partnering of spouses in together facing the threat that the cancer poses to their relationship. While some troubled marriages improve, with cancer refocusing the partners on what is truly important in life. In other teetering marriages, a cancer diagnosis represents the final blow, leading to separation, as this additional set of fears and issues simply overwhelms one or both partners. In some cases, couples may make it through the treatment phase together but find that the survivorship phase presents an entirely new type of stress that highlights underlying problems in the relationship. For some survivors, a cancer diagnosis inspires the desire to make healthier choices in their lives, and that may include ending an unhealthy relationship. A fifth study (CB) indicates that issues that arise in a relationship during cancer can make patients aware of problems and inspire them to make changes. They may recognize, they now have a different direction in life, but the other person isn’t really interested in this new direction. Like any other crisis, if one person feels like he or she has developed or changed, and the other person hasn’t grown, they can outgrow each other. Navigating Your Way Whatever the underlying causes of a divorce or separation, employing strategies (CB) to cope with the new reality and ensure your own well-being is essential. Work to gain perspective and to recognize that this is what was happening in this situation, this is how you feel, and this is how you can feel. Focusing on the future during the treatment phase will also benefit you physically. While it’s true that the timeframe for recovery— physical, emotional and spiritual—varies depending on the type and stage of cancer and the treatment received, letting negative emotions about the end of the relationship take precedence isn’t going to help your healing process. And if you’re not able to move forward on your own, then it’s time to reach out for professional help. Look For Help If you’re facing a separation or divorce, your personal network can be invaluable—family members, friends, your faith community or even work colleagues can provide social support and practical help. A cancer support group like survivingbreastcancer.org and others or individual therapy can also help you cope—not just as a person with cancer but also as a person without a partner. Look for services or groups that can tailor support to your situation and provide insight. The end of any marriage can be frightening, depressing, and challenging for the former partners. The addition of a cancer diagnosis, which comes with its own fears, threats, issue,s and concerns, dramatically compounds the enormous challenges that result from separation or divorce. For the cancer patient whose spouse has left, the attention, involvement, and support of loving family and friends can play an important and significant role in their cancer care and quality of life—providing for the patient’s physical, emotional, medical, and practical needs. Steps to take to minimize the threat of divorce/breakdown of a relationship after a breast cancer diagnosis. Communication, as always is the key. Talk to your partner. Express yourself. Find some time for each other. Schedule time if you have to Start somewhere Find a comfortable place Talk as often as possible Be reassuring Consider outside therapeutic help Write it down Use texts, emails, etc, to help extend the conversation It is understood that Breast Cancer is typically a heinous diagnosis, resulting in some form of the following: surgery, chemo/hormonal treatments, and radiation, and the myriad side effects associated with all of the above. Generally, it is not good for relationships, but good relationships can be made stronger by sharing hardship. As our previous guest blogger stated: " Cancer is messy. It’s dark and scary and forces you to face your own mortality. Want to know a secret? It’s like that for you AND the people around you. It is, indeed, something that not everyone can handle and you know what? That’s okay." We’d love to hear your stories associated with loss of friends, companions, family members and loved ones following your breast cancer diagnosis. The following links/ articles were reviewed to assist this blog. Special call out to all of the various doctors, therapists, and journalists involved in elevating this conversation. • First Comes Breast Cancer, Then Comes Divorce - Beth Gainer ... bethgainer.com/first-comes-breast-cancer-then-comes-divorce • Divorce after breast cancer | Cancer Survivors Network • Cancer Hard on Marriages - WebMD www.webmd.com/.../cancer-cause-divorce-women • Breast Cancer And Divorce: The Struggle To Embrace Hope After ... blog.thebreastcancersite.greatergood.com/breast... • Divorced due to Breast Cancer? ~ Pink Lotus Power Up pinklotus.com/.../divorced-due-to-breast-cancer • Cancer and Divorce - Cancer Fighters Thrive www.cancerfightersthrive.com/cancer-and-divorce • Breast Cancer and Divorce treato.com › Conditions › Breast Cancer • Divorce is a more likely end to marriage when wife is ... www.medicalnewstoday.com/articles/290583.php • You and Your Partner - breastcancer.org • www.breastcancer.org › … › Sex and Intimacy
- Osteonecrosis of the Jaw and Breast Cancer
Did you know that certain breast cancer treatments can increase the risk of osteonecrosis of the jaw? Though it is rare and only a small number of people will develop osteonecrosis of the jaw, it is a serious side effect. And since we believe in breast cancer education and the power of knowledge, let’s learn about osteonecrosis and its symptoms, stages, treatment, and management together. What is Osteonecrosis? Osteonecrosis is the death of bone cells due to a decrease in blood flow, which may result in pain and, in more extreme circumstances, bone collapse. Studies have shown that osteonecrosis, exclusively in the jaw (ONJ), is a rare side effect that results from certain medications—bisphosphonates and denosumab. Such medications, like Zometa, are often prescribed to breast cancer patients to prevent bone loss or even metastasis to the bone . Radiation exposure in the jaw area and certain dental procedures can also cause ONJ. ONJ is identified by visible bone in the mouth. Varying levels of both pain and swelling in the mouth are the most common symptoms. Other symptoms include numbness in the mouth and loose teeth. In serious cases, infection of the jaw may also occur. Osteonecrosis of the Jaw Stages Exposed bone is present in all stages of Osteonecrosis of the jaw and is classified by the following stages: Stage 1: No symptoms Stage 2: Pain, swelling, or infection of the jaw Stage 3: Pathologic fracture, extra-oral fistula, or osteolysis (breakdown of bone tissue) Osteonecrosis from Bisphosphonates Because bone loss (osteoporosis) can occur in women receiving breast cancer treatment, they may be prescribed bisphosphonates. Bisphosphonates function to prevent bone loss and strengthen bones. A rare side effect of taking bisphosphonates is osteonecrosis, particularly in the jaw. The cause of bisphosphonate-related osteonecrosis is still unknown. Chemotherapy treatment while taking bisphosphonates is a risk factor for ONJ. Osteonecrosis of the Jaw Treatment Fortunately, osteonecrosis of the jaw is often not life-threatening. ONJ can be treated with antibiotics, oral rinses, and dental treatments. In more severe stages of ONJ, surgical removal of the affected bone may be necessary. If taking bisphosphonates, make sure to inform your dentist, as certain surgical dental procedures can increase the severity of ONJ. Can Osteonecrosis of the Jaw be Avoided? Because osteonecrosis of the jaw is quite uncommon, definitive methods of preventing this side effect have not been developed. However, you can minimize your risk by informing your oncologist about any upcoming dental procedures, notifying your dentist that you will be taking bisphosphonates, and maintaining good oral hygiene. Thank you for exploring jaw problems and cancer with us. For further study, please explore the sources listed below. Sources: https://pubmed.ncbi.nlm.nih.gov/18422377/ https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Osteonecrosis https://www.aafp.org/afp/2012/0615/p1134.html https://www.mayoclinic.org/diseases-conditions/avascular-necrosis/symptoms-causes/syc-20369859 https://www.mskcc.org/cancer-care/patient-education/osteonecrosis-jaw-onj https://www.researchgate.net/figure/Clinical-staging-osteonecrosis-of-the-jaw_tbl2_6674303 SurvivingBreastCancer.org Resources, Support, & Events: Upcoming Events Our Weekly MeetUp
- New Options for Advanced Cancer Patients
Personalized Cancer Treatment Strategies 101 We all know that the standard of care is simply not enough and if the cancer is not contained early on and actively managed, then it will most likely recur and progress. Below are a few examples of personalized options that often lead to better treatment results and longer time in remission: Newly Diagnosed Patients Chemo Sensitivity Testing Oncologists typically have to choose between a handful of standard chemotherapeutic agents to start from. This decision is often based on little knowledge about the tumor. BUT chemotherapy has toxic side effects, which weaken the body and decrease its ability to fight cancer. If the right chemo isn't chosen (which is often the case), the patient experiences toxicity with no benefit. Chemo-sensitivity testing tests and determines the most effective drug or combination for the patient. It is not routinely done because it requires viable tumor tissue and because it is an out-of-pocket expense. Pursuing this test upfront will set the patient up on the right treatment course from day one. Personalized Cancer Vaccine Surgery is followed by chemo, and chemo is followed by a passive monitoring period (scans, MRI, etc). This period is referred to as a “wait-and-see”, and reactions are only made when the problem recurs. BUT there are experimental tools to activate the immune system to fight cancer proactively. A personalized cancer vaccine is a type of immunotherapy that directs the patient's own immune system to recognize unique markers on the tumor and then awaken it to actively fight cancer cells, helping to reduce the chances of recurrence. In a perfect world, every patient should get vaccinated, but we are not there yet. This treatment is not routinely done because it requires viable tumor tissue and because it requires a complex infrastructure to prepare and administer. It is also experimental (but tested at various academic institutions), and has little or no side effects (good quality of life). Pursuing a personalized vaccine is a proactive way of fighting cancer, can extend time in remission, and reduce the chances of recurrence. Recurrence or Advanced Patients Genetic Sequencing Targeted drugs are different from chemotherapeutic agents. Chemo kills good and bad cells, while targeted drugs are designed to kill the bad cells. A genetic sequencing test (also referred to as a molecular profiling test) identifies unique markers on your tumor, and matches those to drugs designed to target mutations expressed on the tumor. While this often reveals treatment options beyond the current standard of care (because some of the drugs are experimental), this diagnostic does not test whether the drug actually works on that tumor or not. It narrows down a list of about 100+ targeted drugs to about 10, thus giving the oncologist direction. This test is almost routinely ordered in the USA, sometimes covered by insurance, and requires paraffin (dead) tumor tissue. Pursuing this test upfront will identify targeted drugs your oncologist can use to treat your cancer. Drug Screening Test This test screens for the widest range of chemotherapeutic agents, targeted drugs, and experimental drugs (not designed to target a specific mutation). It tests the various options and combinations on the tumor itself and prioritizes the best one that works (so it is not theoretical). This test is not routinely done because it requires viable tumor tissue and because it is an out-of-pocket expense. Pursuing this test upfront will help you identify a chemo, a targeted drug, or an experimental drug from a wider range of options, and confirm that the drug works before wasting a lot of time and effort pursuing a treatment that does not work. Mouse Xenograft Models This is a deeper version of the drug screening test. The idea is to grow the patient’s tumor in mice so when screening drugs, one does not only have the cancer cells, but the entire tumor environment to test on. This helps explore advanced, experimental, and combinational drugs that might work (or drugs that have previously worked on other indications) rather than experimenting on the patient’s body. This is helpful when you have a rare disease or very limited treatment options left. This test is not routinely done because it requires viable tumor tissue and because it is an out-of-pocket expense. Pursuing this test upfront will help you identify a chemo, a targeted drug, an experimental drug, or a combination of them, and also confirm that the drug works before wasting a lot of time and effort pursuing a treatment that does not work. Personalized T-Cell Therapy Also referred to as TILs (Tumor Infiltrating Lymphocytes) is a form of Immunotherapy, and often complements vaccines. Vaccines recruit more soldiers to the battle by educating the part of the immune system that does not recognize the cancer. T-cell therapy also recruits more soldiers to the battle, but by cloning and multiplying the part of the immune system that recognizes the cancer, thus giving your own immune system a better chance to fight the cancer cells with little or no side effects. Ideally, every patient should get T-cell therapy, but this is not yet feasible. T-cell therapy is not routinely performed because it requires viable tumor tissue, is experimental, and requires a complex infrastructure to prepare and administer. Pursuing T-cell therapy boosts the immune system to fight cancer in parallel to other treatments you are on, can extend time in remission, and reduce the chances of recurrence. Bottom Line No two tumors are alike, and each contains important information critical to the treatment, BUT tumors are NOT preserved alive by the hospitals and are routinely discarded. Personalized treatments start with having access to the viable tumor, Store My Tumor. For more information: www.storemytumor.com Team StoreMyTumor +1.267.702.5501 cs@storemytumor.com www.StoreMyTumor.com Return to the Blog
- Is Invasive Ductal Carcinoma (IDC) Curable?
By Rachael Curry What is IDC? Invasive ductal carcinoma (IDC) is the most common type of breast cancer, accounting for 80% of all breast cancers in women and 90% in men. Yes, you read that correctly – 1% of men are diagnosed with breast cancer . Also called infiltrating ductal carcinoma, it refers to a type of cancer that has spread beyond the ducts, which carry milk from the breast lobules to the nipple. “Invasive” refers to this spread of the cancerous cells, while “ductal” refers to the origination of the cancer in the milk ducts, and “carcinoma” refers to a type of cancer that begins in the skin or protective tissues such as breast tissue. While IDC is most common in older women, especially those over the age of 55, it can also affect younger women and men. Like many forms of breast cancer, IDC often has no symptoms at first. However, signs sometimes include: A lump in the breast or underarm Skin irritation or pain Redness or scaly texture on the breast and nipple Unusual discharge from the nipple Nipple turning inwards IDC is usually detected as a lump in a screening mammogram, which takes an X-ray picture of the breast. This leads to a biopsy and other testing procedures to assess the size and spread of the tumor. Potential tests include CT scans (using multiple angles of X-rays to create cross-sectional imaging), PET scans (using imaging to visualize metabolic processing within the organs and tissues), MRI (using a magnetic field to create images of organs and tissues), bone scans (using nuclear imaging to detect the presence of metastatic cancer in bones), and chest X-rays. Invasive Ductal Carcinoma Prognosis Is invasive ductal carcinoma “curable”? The linguistics of the word “curable” are not black and white. In this case, we will assume that “curable” means that there is no remaining evidence of disease. The short answer is that IDC can be curable with the correct treatment methods. Treatment will be determined based on the stage of IDC, which classifies the size and location of the cancerous cells. The provider will analyze the growth and spread of the lump throughout the body to determine this. IDC consists of four stages. Stage 1 means that the tumor is smaller than 2 centimeters in diameter and the breast cancer is contained to just the breast. Stage 2 is a smaller lump that has only spread to a few lymph nodes in the underarm area, while Stages 3-4 refer to a larger lump that has spread to multiple lymph nodes or other organs. The 5-year survival rate of Localized IDC is 99% while Regional IDC is 86% and Distant IDC is 27%. With IDC, there are usually strong positive prognoses, although, as with any medical procedure, it is impossible to guarantee a 100% success rate. How is IDC Treated? Treatments are classified as either local, meaning they only target one area of the body, or systemic, meaning they target the entire body, likely for a cancer that has spread and progressed to a further along stage. Local Treatments Local treatments include surgery and radiation therapy. Surgery is used to remove the breast tumor, which is sufficient if the cancer has not spread to the lymph nodes. Either a lumpectomy will remove the lump and a bit of surrounding tissue, or a mastectomy will remove part or all of the breast tissue. Radiation therapy directs rays of high energy at the breast to destroy any remaining cancerous cells after surgery. Systemic Treatments Systemic treatments include chemotherapy, hormonal therapy, and targeted therapy. Chemotherapy utilizes powerful medicine to destroy cancerous cells in the body by traveling throughout the bloodstream. Side effects are frequent since this also weakens healthy cells within the body. Hormonal therapy, also called anti-estrogen or endocrine therapy, is used to lower the amount of estrogen in the body. Because the hormone estrogen signals the growth of cancerous cells, this form of therapy can either destroy or block the hormonal receptors that create this signal. Targeted therapy similarly targets certain parts of cancerous cells to inhibit their growth. Conclusion The treatment method for IDC will be determined between you and your provider. Regardless of the treatment selected for your personal circumstances, there is a largely positive outlook. Routine mammogram screenings are important to detect potential invasive ductal carcinoma early on, when there may be no symptoms, and lead to prompt treatment initiation. Read more about breast cancer risk factors . https://www.hopkinsmedicine.org/breast_center/breast_cancers_other_conditions/invasive_ductal_carcinoma.html https://www.breastcancer.org/symptoms/types/idc https://www.webmd.com/breast-cancer/ductal-carcinoma-invasive-in-situ About the Author I am a 2019 graduate of the University of Michigan with a BA in Gender and Health, and a current MPH candidate at Boston University focusing in Healthcare Management. I am interested in the intersection of social identity and women’s reproductive health. In the future, I hope to help create a more accessible and equitable healthcare system for all women. During my free time, I enjoy painting, drawing, running, and hiking.
- 5 Toxic Makeup Ingredients To Avoid
By Rachael Curry Did you know that the Food and Drug Administration (FDA) does not require safety tests for makeup products before they're released to unaware consumers? Yes...you read that right. There are only 11 ingredients and color additives that the FDA has actually prohibited. This might be shocking until you attempt to read the ingredient names on the back of your bottle of foundation. If you can't pronounce any of them, you're not the only one! Our skin is our largest organ. What we put on our face can penetrate into the deeper levels of our skin and be absorbed into our bloodstream. While it is not as literal as dabbing lavender essential oil on our wrist and wondering if it will show up the next time we have our bloodwork taken, there is some truth in knowing what we lather, rub, spray and pencil onto our faces can enter into our bodies. So, what exactly are we putting on our skin? Are our makeup products filled with toxic ingredients? Why is "clean beauty" (defined as beauty products composed only of ethical and proven ingredients) so important? In the EU, cosmetics ingredients must be assessed for safety before entering the market. Those that are linked to harm are restricted. Unfortunately, this level of oversight does not exist in the US, thus enabling cosmetic companies to prey on the unwitting US consumer as a test subject, which is both unethical and dangerous! I am not saying you must immediately toss out all of your makeup products, shampoos, and cleansers, but I would argue that we should make the transition to conscious beauty. If we want to be healthy, not just in terms of diet and nutrition, but lifestyle, then let’s also start to make the shift in terms of how we are taking care of our bodies on the outside! Let’s start with the basics as we make this transition to being more aware of toxins in our everyday products. Here are my top 5 to look for when searching for cosmetics and self-care products: 1. Parabens According to the Environmental Working Group, (EWG), parabens can act like the hormone estrogen in the body and disrupt normal hormonal function. There is concern that exposure to environmental estrogens may contribute to the risk of breast cancer in women by changing the gene expression and accelerating the growth of breast cancer cells (Wróbel 2014, Okubo 2001). Long-Chain Parabens Long-chain parabens, like propylparaben and butylparaben , have been linked to increased levels of estrogen activity. Most recently, the European Chemicals Agency has listed butylparaben as a substance of high concern and will be phasing out products that contain this hazardous chemical. 2. Phthalates Phthalates are another endocrine disruptor to watch out for. They are typically found in self-care products like deodorant and nail polishes, which add to the plasticity of the product. 3. Ethylene Oxide According to cancer.gov , this carcinogen can be linked to breast cancer. It is commonly found in Formaldehyde. Ethylene oxide is on the list of what I call the “Unknown 7”. That is because there are 7 ingredients that US manufacturers do not need to disclose. While Canada and the EU are required to disclose the information, there is currently no legislation on the regulation of this toxic, cancer-causing substance within the US. Ethylene oxide is found in common products such as nail polish and eyelash glue, as well as baby soaps and shampoos. Since this is one of the “hidden” ingredients, the only way to avoid this carcinogen is by looking for ingredients that enable the slow release of formaldehyde, including: Diazolidinyl Urea DMDM Hydantoin Imidazolidinyl urea Quaternium-15 Tosylamide/Formaldehyde Resin Sodium hydroxymethylglycinate 2-bromo-2-nitropropane-1,3-diol (bronopol) Polyoxymethylene Urea 5-Bromo-5-Nitro-1,3 Dioxane Methenamine Glyoxal Benzylhemiformal 4. Petroleum Distillates These ingredients are often produced in the same location as the cancer-causing chemicals found in gas and oil. It is most commonly found in mascara, and besides the harmful chemicals, it can cause skin irritation and dermatitis. 5. Fragrances Fragrances as a whole might seem like quite a large category. However, fragrances can be potentially harmful as the US does not require manufacturers to list the chemicals that their fragrances are actually composed of. So, when you see “fragrance” listed as an ingredient, it could be referring to a number of different chemicals. For those with sensitive skin, fragrances can be extremely irritating, and in others, can even cause potential allergic reactions. And because the actual chemicals are not disclosed, fragrances can sometimes be cancer-causing. All of this information may seem overwhelming at first! It is hard to be conscious of what’s inside every product we purchase — from food and cleaning supplies to makeup and more. It is also okay if you do not have the energy or resources to completely transform your beauty products. Perhaps there is just one type of product you’d like to think more consciously about, and that is a great place to start! If clean beauty interests you, many brands in the US focus on creating safe and ethical cosmetics. Thrive Causemetics is one clean beauty brand that sells products free of parabens, phthalates, sulfates, and fragrances. Additionally, a percentage of their profits are donated to partners, several of which are breast cancer organizations including ours, survivingbreastcancer.org! Follain is another brand that has a laundry list of restricted chemicals for their products. They also use safety reviews and performance reviews to ensure that their cosmetics are both safe and good quality before entering the market. (Follain also has two storefronts in Boston, located in Beacon Hill and the South End!) They have also expanded to TX, WA, and MD as well! Some major makeup retailers, such as Sephora, will even allow you to filter their products in order to view only the clean beauty products. One easy way to make the transition to clean beauty might be to replace old products as you run out - such as purchasing a “clean” eyeliner when you run out of your old eyeliner. If you are someone who prefers to buy makeup at the drugstore, you might just look for products that have smaller lists of ingredients or lower concentrations of the ingredients above. There is never a bad place to start! If you are interested in learning more about clean beauty, hear from reps at Follain , Ecothriver Cultivate Cleaner and Amy Ferraro Whitset, who is an Independent Consultant for Beautycounter on the podcast, Breast Cancer Conversations.
- Best Questions To Ask Your Breast Surgeon
What questions should you ask your breast cancer surgeon? Preparing for your first appointment with your breast surgeon is an exciting moment. It allows you to meet the surgeon who will be removing your tumor! It also should be an opportunity for you to ask questions, get more information on what options are available to you, and in some cases, you may even leave your appointment with your surgery date scheduled. Once the surgery date is scheduled, you may even feel a sense of calmness and relief knowing that the process is moving along and there is a concrete date you can focus on. For many, the day of surgery is celebratory because it is the day they are removing the cancer! However, leading up to that first appointment can be overwhelming, anxiety-driven, and perhaps even numbing as you are grappling with your recent breast cancer diagnosis. With appointments ranging from meeting with oncologists and your medical care team to showing up for bloodwork, tests, and waiting for results, we understand that a breast cancer diagnosis is like a crash course in a foreign language. How are you supposed to know what questions to ask when you don't yet know what you don't know! Don't worry, that is where Surviving Breast Cancer comes in! Having reviewed numerous reputable sources and speaking with breast surgeons, our breast cancer survivors, and thrivers, we've compiled a list of the most burning questions. Pick and choose from the list below, or ask your surgeon about all of them! The choice is yours, and your doctors will make the time to answer all of your questions, define terms you don't know, and explain surgical procedures so that you have a solid understanding of ALL of your choices, as well as your rights as a patient to make informed decisions and consent. After all, this is your body and your choice! Download a printable PDF version. QUESTIONS TO ASK YOUR BREAST SURGEON ***Note: None of the information provided on this sheet constitutes medical or legal advice. Always consult with your medical care team. This compilation of questions is not comprehensive and is only meant for educational purposes. The questions below have been compiled from online resources such as cancer.net, breastcancer.org, and from those diagnosed with breast cancer in our survivingbreastcancer.org community. If you would like to add to this list, please contact info@survivingbreastcancer.org . Questions About Your Surgeon Are you board-certified? Do you specialize in this type of surgery? How many operations like the one I am considering have you performed? Questions To Ask Before Surgery Do I need any other tests before this surgery? Am I a candidate for a lumpectomy? Am I a candidate for nipple sparing surgery? If I have a choice between a lumpectomy and a mastectomy, what are the pros and cons of each option in my case? What is the best possible outcome from my surgery? What is the worst-case scenario from this type of surgery? Questions To Ask Your Surgeon About Lymph Nodes Do the lymph nodes in my underarm need to be removed? What is a sentinel lymph node biopsy? What are the benefits and risks? Would you recommend it for me? What is the risk of lymphedema with a sentinel lymph node biopsy? What is the risk of lymphedema with axillary lymph node dissection? What should I know about taking care of my arm after a lymph node dissection? What is the benefit of having more lymph nodes removed? What are the side effects of these procedures? Can they be prevented or minimized? Questions To Ask Your Surgeon About Your Breast Cancer Treatment Plan Should I consider chemotherapy before surgery? Will radiation after surgery affect my reconstruction options? Will radiation affect the aesthetic outcome of my surgery? (i.e., will my breast change size?) Questions To Ask About Surgery Options When do I need to decide on surgery? What are the risks if I decide not to have this surgery? Will my tumor be saved? Where will it be stored? For how long? How can it be accessed in the future? If I need a mastectomy, is reconstruction (plastic surgery) an option for me? What are the advantages and disadvantages? What types of breast reconstruction surgery am I eligible for? Fat Grafting/ Autologous Fat Transfer vs Implants vs. opting for Going Flat and no reconstruction (aesthetically flat closure) If I choose to have implants, are there different types of implants to choose from? How do I decide which implant is best for me? What are the potential risks and side effects of this operation? Do I need to consult a plastic surgeon about reconstruction options? Can you help me arrange that? How many surgeries will be involved? Will I need expanders? Can you explain to me what they are and for how long I will have them? Am I eligible to have one surgery where you remove the tumor and can go directly to implant? What are the pros and cons? If I have a mastectomy without reconstruction, where can I get a prosthesis? Is this covered by my insurance? Will there be permanent effects from the surgery? Should I get a second opinion? How do I go about doing that? Questions About the Surgery Itself How long is the procedure? How long will I stay in the hospital? What type of anesthesia will I need for this operation? What medications and supplements should I stop taking? Should I stop taking hormone replacement therapy? What about birth control pills? What are the possible complications for this type of surgery? How would I know if there is a problem? Will my medical insurance cover all charges from you and the hospital? Questions About Recovery How long will it take me to recover after the surgery? What should I expect the first day, first week, first month? (check out our blog featuring our favorite pillows, recovery hacks, and bras we love!) What kind of pain will I be in afterwards? How do you help me manage my pain? What risks or side effects of this surgery do I need to know about? i.e., pain, tenderness, bruising, scarring, numbness? Which ones do I need to report to you? Will any of the side effects be long-term? Is there anything I can do to reduce side effects? When should I call your office if I experience any side effects? Will the hospital provide a home nurse to help change my bandages? How will this be arranged? Will I have stitches, staples, and/or bandages? Will I need to have surgical drains? How do I clean the drains? How long will the surgical drains be in? What kind of care will my incision need after surgery? Is there anything I can do before surgery to help the healing process after surgery? When can I shower or bathe? Where will the scar be, and what will it look like? Can you draw me a picture so I can better understand? What will my breasts look and feel like after surgery? What type of clothes should I bring to go home in? Will I need a special type of bra? When will I need to return for a follow-up appointment? When will I find out the results of the surgery? Who will discuss the pathology report with me? Will it be in person or by phone? Will my arm be affected by surgery? For how long? Will I need physical therapy for my arm? Are there physical therapy exercises I should do after surgery? When can I start exercising again? Are there any activities I should avoid and for how long? When can I start to treat my scar on my own? Do you recommend special creams or lotions? When can I return to work and other daily activities? Questions To Ask About Your Surgery Day What should I do to get ready for the operation? Do you have recommendations on how to help me relax before surgery? What can I expect as part of the pre-op? Does that happen the same day of the surgery or prior? Questions To Ask Your Breast Surgeon After Your First Surgery What is the size of the tumor? What is the grade and stage of this disease? What are my biomarkers? What do these mean? What are the chances that the breast cancer will return? Will I need chemotherapy? Am I eligible for the Oncotype DX or Mammoprint? Can you explain my pathology report (laboratory test results) to me? Can I get a copy of my pathology report? Was all of the cancer removed during the surgery? Do I have clear margins? How many lymph nodes were removed? Has the cancer spread to any of the lymph nodes? If so, how many? Has the cancer spread anywhere else in my body? Do I need additional surgery? Are there additional tests you recommend? How often do you and I meet for follow-ups?
- Metaplastic Breast Cancer
By Candace Bloomstrand Metaplastic Breast Cancer is a very rare form of breast cancer that originates in the milk duct of the breast before spreading to the tissue surrounding the duct. Metaplastic breast cancer accounts for less than 1% of all breast cancers, but it can also behave more aggressively. Metaplastic tumors look and behave differently from other types of breast cancer tumors. Metaplastic tumors are often, but not always, “triple-negative,” meaning that they test negative for estrogen and progesterone receptors and the HER2 protein. The tumors often contain types of tissue not normally found in the breast, such as squamous cells or osseous cells. Metaplastic tumors are also often larger at diagnosis than other breast cancer tumors and more likely to metastasize. (Listen Now) To access our podcast with Jessica Duemig, author of Warrior, Challenge Accepted , please click on the image to the right to hear more about her experience with Metaplastic Breast Cancer . Because Metaplastic tumors are quite rare and often “triple-negative,” treatment options are limited and vary depending on the size and location of the tumor, whether the cancer has metastasized, and the patient’s overall health and age at diagnosis. Surgery, either via a lumpectomy or a mastectomy, and radiation therapy are often recommended. Metaplastic breast cancer is also more likely than other breast cancers to recur after treatment, so your doctor may recommend systemic therapy as well. The prognosis for Metaplastic Breast Cancer greatly depends on the stage and grade of the tumor, as well as the patient's age and overall health. Five-year survival rates range from 49% to 68%. (Click here and here to read more about Triple Negative Breast Cancer). Although the survival rate is lower than other forms of breast cancer, science is rapidly evolving, and every day we learn more and more about this form of breast cancer and new ways to effectively treat it. Metaplastic Breast Cancer Metaplastic carcinoma of the breast is a subtype of invasive breast cancer. Metaplastic breast cancer is a very rare form of breast cancer, accounting for less than 1% of cases. Since it is invasive, it has grown through the wall of the milk duct into other breast tissues or beyond the breast. Doctors call it metaplastic because of the way the cells look under a microscope. Instead of looking like ductal cells, metaplastic tumor cells look very abnormal. In fact, they look more like other tissues in the breast, such as connective tissue. This has lead scientists to believe the ductal cells went through some kind of unexplained change—or metaplasia. Metaplastic Breast Cancer Global Alliance: Who Are We? This grass-roots patient organization was started by a team of women, all diagnosed with metaplastic breast cancer, who are dedicated to helping to improve the outcome for all women in this community. We envision a time in the not-so-distant future when women diagnosed with early stage MpBC can be told by their doctors that the protocol they are being treated with is known to produce good results for that specific type of cancer, and that the future is not so grim. We strive to bring hope to the horizon for women diagnosed with MpBC and their families. Breast Cancer Survivor Makes Every Step Count For Shalena Prude, life is not something to face sitting down. Grounded in strong friendships and family ties, Shalena has built a successful career and kept a close watch on her health. But a breast cancer diagnosis 2 years ago showed her just how strong she needed to be to stay standing. The diagnosis was stage 2A metaplastic triple-negative breast cancer, a very rare and aggressive form of cancer. About 10%-20% of breast cancers are triple negative, and fewer than 2% are metaplastic. These cancers are more difficult to treat and have a poorer prognosis. But Shalena is ready to share her story and to let others see her cancer not as a weakness but as a brave chapter in her journey.
- Is There Such A Thing As Toxic Positivity?
The short answer is yes. What Is Toxic Positivity? The Psychology Group defines toxic positivity as “the excessive and ineffective overgeneralization of a happy, optimistic state across all situations. The process of toxic positivity results in the denial, minimization, and invalidation of the authentic human emotional experience.” (See their Toxic Positivity table below and feel free to share it). Although we at survivingbreastcancer.org strongly believe in the power of positivity , we do recognize that positivity can have negative effects when used to mask or silence natural human experiences. By denying the existence of critical thoughts, feelings, and emotions, you may set yourself up to fall into a negative state of repression, which can be a tipping point leading towards depression. Humans are flawed and subject to negative emotions. We suffer the ignominy of jealousy, anger, resentment, worthlessness, inadequacy, and greed. Everyone must accept that life can be overwhelming, painful, and insufficient. Let’s not pretend that life is composed exclusively of positive experiences and emotions. Why Is Toxic Positivity Harmful? Toxic positivity takes positive thinking to an extreme by only putting optimism on a pedestal, denying authentic human emotion. It can become a form of shaming, as it sends a signal that our feelings are wrong. It can also cause guilt that somehow we are "broken" and need to "fix" how we are feeling. Subtle signs of true emotional states can appear when friends, family, and colleagues expect you to "get over" something, brush off problems, and leave your personal matters at the door. People can expect you to put on a smile and muscle through. Are You Suffering From Toxic Positivity? There are many telltale signs that one is approaching Toxic Positivity, including: Feeling guilty for your emotional state Shaming others for their positivity Denying how you are truly feeling Minimizing the experience Hiding behind the veil of perspective How to Overcome Toxic Positivity There are workarounds to escape Toxic Positivity. Trust that your emotions play a critical role in your life and or recovery. Accepting difficult emotions serves as a coping mechanism, decreasing the intensity of those feelings. Recognize acceptance when you talk about how hard your day was, or how you are having difficulty with your medical treatment, with your caregiver, partner, parent, friends, or family. It’s important to relieve yourself, to get things off your chest, especially negative emotions. It’s like lifting a weight from your shoulders, even if it’s more difficult than pretending everything is fine. Emotions are not all positive or all negative. Instead, think of them as guardrails; they help us make sense of life and respond accordingly to its ebbs and flows. If you’re sad about leaving your primary care team, it probably means that experience was meaningful, successful, and reassuring. If you feel anxiety about entering the post active treatment stage, it probably means you are concerned about recurrence and or how you are perceived by others. Feelings are not only a way for our mind to clue us into what’s happening; they also help communicate information to those around us. If we are sad, it may attract comfort. If we convey guilt, it helps the call for forgiveness. While it may be beneficial to try to look on the bright side of things and find the silver lining in life’s myriad experiences, it’s important to also acknowledge and listen to our emotions when they aren’t as pleasant. No one can be a ray of sunshine all the time; as humans, we just don’t work that way. In fact, paying attention and processing your emotions as they come and go may help you better understand yourself, and enable those around you to help you even more.
- Health Insurance and Transition-Related Care
We at SBC wanted to touch on a pressing issue pertinent to the LGBTQIA+ community. Although the value of equal protection in the eyes of the law has been underlined by several legal precedents over the years, it is still challenged far too often. Insurance, in particular, is one aspect in which regulation has lagged behind the progressivism of the new age. It is crucial to bring attention to the discriminatory practices of insurance companies, 365 days of the year. After someone has transitioned, there is a lot of transition-related care that may be medically necessary. Still, not all insurance companies take this into consideration and do not always cover these costly necessities. This type of transition-related care cannot be explicitly excluded , according to 24 states and the District of Columbia. This consensus is based on a broad-but-controversial interpretation of the Americans with Disabilities Act and Title VII of the Civil Rights Act. Still, this means over half of states allow transgender exclusions in health care coverage for health insurance plans. Insurance companies may attempt to word these exclusions in many different ways, but in almost all cases, these exclusions are considered discrimination in the eyes of the law. Some examples of discriminatory wording include categorical exclusions and limits for transition-related care or a transition-related procedure. Also, they cannot change one’s rates or cancel their coverage due to one’s transgender status . The final and arguably most frequent discriminatory practice engaged in by insurance companies is denying coverage for care that is typically associated with a specific gender. For example, a transgender woman could be recommended for anything from gynecological care to a prostate exam, and neither one should be denied by her insurance company on the basis of gender . Ultimately, she is entitled to whatever care her provider deems medically appropriate . Luckily, healthcare plans on the Health Insurance Marketplace from www.healthcare.gov are required to cover all sex-specific preventive services deemed medically appropriate. This means that for those who struggle to find coverage that matches their needs, the Health Insurance Marketplace may be one of the many options to consider! Resources: “Health Care.” Know Your Rights , National Center for Transgender Equality, www.transequality.org/know-your-rights/health-care . Landman, Keren. “Fresh Challenges To State Exclusions On Transgender Health Coverage.” NPR, 12 Mar. 2019, www.npr.org/sections/health-shots/2019/03/12/701510605/fresh-chall enges-to-state-exclusions-on-transgender-health-coverage . “Transgender Health Care Coverage.” HealthCare.gov, www.healthcare.gov/transgender-health-care/ . “Which States Prohibit Transgender Exclusions?” Out2Enroll, www.out2enroll.org/which-states-prohibit-transgender-exclusions/ .
- Breast Cancer Recurrence: Second Primary versus Metastasis
Metastatic breast cancer (MBC), also referred to as Stage IV or advanced stage breast cancer, occurs when cancer cells have spread through the lymphatic system or bloodstream to other parts of the body, such as bones, brain, lungs, or liver. De Novo is a term that refers to a metastatic diagnosis at the time of initial diagnosis and staging. A de novo metastatic breast cancer diagnosis accounts for approximately 6-10% of breast cancer diagnoses. Distant Recurrence is a term that is used when the cancer has returned after an initial early-stage diagnosis (i.e., Stage 0, II, III) and treatment, and has spread beyond the breast to other parts of the body. The likelihood of recurrence depends on a number of factors, including: Tumor characteristics Genetic predisposition Current cancer stage Age at the time of diagnosis Lymph node involvement Typically, oncologists will closely monitor patients for the first five years, as cancer recurrence is highest during this period. According to the Cleveland Clinic, symptoms depend on where the cancer returns. For example, people may experience bone pain if the cancer has metastasized to the bones. Other symptoms may include chronic dry cough, dizziness, extreme fatigue, chest pain, or difficulty swallowing. It is important after treatment to maintain a healthy diet, exercise, and to keep up with your medical follow up appointments. In addition to the whole month of October being recognized broadly as breast cancer awareness month, you may not know that October 13th specifically marks metastatic breast cancer awareness day . Whereas MBC refers to the original breast cancer spreading to other parts of the body, a second primary cancer (SPC) refers to an additional, separate cancer diagnosis. “A second primary cancer may occur in the same tissue or organ as the first cancer, or in another region of the body. These second cancers may be related to a genetic predisposition , common risk factors, treatments for the original cancer, or simply occur sporadically as cancer often does.” ( verywellhealth.com ) For breast cancer survivors, this means a second primary diagnosis could be a new breast cancer diagnosis after original treatment, or a separate cancer in other tissues of the body. The incidence rate of all SPC has been rising, mainly because of improved survival rates of cancer patients after their original diagnosis. In the articles below, we share research being done on MBC and SPC, as well as support resources for those experiencing either. From SurvivingBreastCancer.org Living With Metastatic Breast Cancer - Resources & Support 116. Living With Metastatic Breast Cancer & Our MBC Life While breast cancer may unite us, there are many nuances, even within the metastatic community to bring to light. These women share their unique and powerful stories with us. They are advocates and supporters, and they are here to educate, share in our community and create space for our MBC breast cancer community. Listen Now. #110. Losing Someone You Love to MBC: Meet The Husbands In this episode, we talk with three men who have lost their wives to metastatic breast cancer -- Jimmy, Andrew, and Christian -- as they take us through their journeys through cancer with their wives and share with us the wonderful memories of these truly impactful women. They reveal the emotions they experienced with the initial diagnosis, the ways they grappled with supporting their wives while maintaining perspective, and share advice for couples who maybe embarking on their own cancer journeys together. Listen Now. #122. Cancer Recurrence and the Power of Twitter In this episode we speak with Silke. Diagnosed with stage II breast cancer only to find out it had spread to her bones 6 years later. Silke shares with us the intimate emotions as she navigates the successes of a surgery, a low onco-type score, and not needing radiation. After being on three lines of treatment she is now seeing positive responses from a clinical trial. Listen Now. Thursday Night Thrivers: Thursday October 14th, 7 PM EST In addition to our ongoing weekly Thursday Night Thrivers meetups, beginning October 14th the second Thursday of each month will include a special breakout room for the MBC community to connect. RSVP Here. Content Across The Web Family History and Risk of Second Primary Breast Cancer after In Situ Breast Carcinoma ( Cancer Epidemiology, Biomarkers, and Prevention ) This research, published in 2018, aimed to examine why some women develop second primary breast cancer after in situ breast cancer. They found that first-degree family history of breast cancer was associated with about a 33% increased risk of developing a second primary breast cancer among women with a previous in situ breast cancer and those with two or more affected first-degree relatives had an even higher risk, about 94% more likely. Those whose relative was diagnosed at less than 50 years old were about 78% more likely to develop a second primary breast cancer. No difference in risks associated with the number or age of affected relatives was observed by menopausal status. If your family history puts you at an increased risk, it is important to know this and share it with your doctor so that they can be proactive about monitoring for a second primary cancer. Read More. Risk of Second Primary Cancers Among Long-Term Survivors of Breast Cancer ( Frontiers Oncology ) A 2020 study out of China used data on second primary diagnoses among long-term breast cancer survivors to create a clinically predictive model of patients’ likelihood to develop an SPC. The researchers found that cumulative incidence of SPC increased over time. Radiotherapy was associated with increased risk of any SPC, while chemotherapy was significantly associated with decreased risk of any SPC. These findings can help identify patients at increased risk of SPC. Read More. #LightUpMBC ( METAvivor.org ) METAvivor is an organization dedicated specifically to supporting the MBC community. For Metastatic Breast Cancer Awareness Day on October 13th, they’ve created the #LightUpMBC campaign to promote the necessity of devoting more funds to MBC research. Currently only 5% of all breast cancer research funding goes toward MBC research. To help spread this message, on October 13th, 200 landmarks worldwide will be lit in pink, teal, and green, the colors of the metastatic breast cancer ribbon. Visit their site and find if any landmarks in your area will be participating this year. Read More. Metastatic Breast Cancer ( Cleveland Clinic ) Symptoms of MBC can vary depending on where it has spread to, but can include bone pain, bones that fracture or break more easily, nausea, worsening headaches, visual disturbances, jaundice, and unexplained weight loss. While some symptoms of MBC are similar to side effects of some medications you may be on, if these are new symptoms, it’s important to let your doctor know. Most treatment for MBC is systemic, meaning the treatment targets the whole body. Treatments can include a combination of chemotherapy, hormonal therapy, immunotherapy, and targeted therapy. Your exact treatment plan will depend on what parts of the body the cancer has spread to, past breast cancer treatments, symptoms, and tumor biology (how the cells look and behave). Read More.
- Preparing for my Double Mastectomy and Assembling my Care Team
By Whitney Wharton I had an abnormal routine mammogram in August 2024, which resulted in an ultrasound, then a biopsy, which confirmed breast cancer . Author Whitney (right) and her wife, Rebecca I had a double mastectomy in late November with immediate silicone implant reconstruction. My surgery was about 2.5 hours, and I went home the same day and went back to work 2 weeks later. I then had radiation. I take oral therapy, CDK4/6 inhibitor Kisqali, as well as an aromatase inhibitor and an estrogen blocker, because I was premenopausal and still producing estrogen. Author Whitney (left) and her wife, Rebecca The following are tips from other women that significantly helped me, and lessons learned that I wished I had done differently. I also sprinkle in humor because that personally helps me, but I am not making light of cancer and understand that this is not a laughing matter. According to the American Cancer Society , about forty thousand women die of breast cancer each year in the United States. I also understand that I had excellent care as an insured person who works at the same institution where I receive care, and that is a privilege. Note: This article offers general information and does not replace professional medical advice. Make sure to discuss your options with your healthcare provider. Be your own healthcare advocate. Ask your care team all your questions . Take your time. If you don’t understand the answer, ask them to explain it in a different way. Don’t feel like you have to rush. The physicians work for YOU. This is probably controversial, but in my opinion, liking/disliking your surgeon is not as important as their skill. We had a terrible first meeting with my surgical oncologist. She is an angry elf. I thought my calm and collected Queen (my wife, Rebecca) was going to come over the table at her (which was super sexy in retrospect). I am so thankful that my wife was there because I was totally taken aback and speechless, and she took control when I couldn’t, and handled the situation. However, my surgeon is the best in the business, and I’d have her remove Thelma and Louise again. (The new silicone sisters are Kourtney and Kim.) I would, however, recommend finding a medical oncologist that is both skilled and has a good bedside manner , because you will be working with them long term . Insist on a care TEAM. Get a medical oncologist before surgery. Ask each physician every question you have, even if it’s not their specialty. Some of the most helpful feedback I received came from asking my doctors this question: “What would you hope your daughter would choose in this situation?” A few times, their answer did not match what the clinical recommendation was, and that continues to guide my care decisions. In my experience, I was asked to make decisions from a menu of options that worked for me as a human, my family, and my comfort level. I wasn’t quite prepared for this level of involvement, but it was both scary and appreciated. Cancer is not an exact science. Take someone with you to your appointments. You will be on information overload , and may have to make quick decisions. Also, write down your questions . I found it helpful to have shared notes on my phone that my Queen/sister/mom could also add to. Waiting is the worst. And there is a lot of it. Ask your doctor about Oncotype DX tests, genetic counseling, etc. before surgery. Someone I love would have opted for mastectomy vs. lumpectomy had she known her genetic information and Oncotype DX scores before surgery. Information from Oncotype DX and genetic counseling can help with decisions about postop treatment (like chemo) and navigating recurrence risk. Author Whitney (left) and her wife, Rebecca Over-prepare for surgery. I probably did this to the extreme, but it made me feel better. Fill all your prescriptions beforehand. Have your bed/recliner all set up and ensure you are as comfy as possible. I also gave close contacts my wife’s phone number so she could respond in case I was unable or heavily medicated, and people wanted updates. Ask if your surgeon administers a nerve block . I’m not sure if this is why my pain never exceeded 3/10 and why I didn’t need hard pain meds, or if I just got lucky. Probably both. But consider getting a nerve block. Assemble your home care team . I was SO lucky to have my Queen, my sister and my mom. My wife was my constant and helped with my drains, showers and basically everything. My sister came to help run errands and help with my dogs and my mom came a few days after my sister left. And be patient with your home care team. They are just as (if not more) scared than you are. Fiber supplements/bars to help with constipation. I recommend starting them as soon as possible. Trust me. Keep a log of your meds/drain output. I had a “cancer table” with my cards and flowers and my meds all in one place. A place where I could easily access and find things was helpful. If you have to wear a compression cancer corset (bra) after surgery , make sure you get one that fits properly. I have man shoulders and am 5’11’’, and I felt much better when my home care team ordered new ones for me. One size does NOT fit all, and you should be comfortable. There will likely be details and information that you won’t know until after surgery. I didn’t know if they would be able to save my nipples until surgery. It was a blood flow thing. My plastic surgeon told me that if he wasn’t able to save my nipples that they could sew them to my leg and replace later, to which I responded, “What in the Stephen King are you even talking about?!” Luckily they were able to save mine, but if not, I opted to just let them go. They are just nipples, after all. On the topic of nipples (these are a few of my favorite things), there are many options if you are not able to have nipple-sparing surgery. My besties are mainly men, and I put this to a vote. Top three votes were 1) getting three boobs like the woman alien in the movie Total Recall starring Arnold Schwarzenegger, 2) tattoos of waffles, or 3) having buttons sewn on... for texture. Helpful gifts: Soft pajama shirts that zip in the front. Cash for tips for valet parking at doc visits. Meal trains might feel overwhelming – especially if you have a tiny fridge like we do and don’t want to eat the same thing for days in a row. I’d suggest Instead of Flowers meal delivery, or DoorDash/Uber Eats gift cards are awesome. Bookstore gift cards (my favorite). OK that’s all I’ve got. I hope some of this is helpful for at least one person. Someone also please Google the freezing point of silicone so I know if I am safe to venture outside during the polar vortex with Kourtney and Kim. Love to you all and for anyone who needs an ear, a shoulder or support during their own journey, I’m always here. Thanks for reading. Whitney, Kourtney and Kim Note: This article offers general information and does not replace professional medical advice. Make sure to discuss your options with your healthcare provider. About the author: Whitney Wharton, PhD Associate Professor Cognitive Neuroscientist Emory University I am a research scientist at Emory University in Atlanta and am doing a story on cuts to breast cancer research. I testified at the U.S. Senate on the impacts of these cuts to patients and scientists. You can watch it on YouTube: https://www.youtube.com/live/JofqSdWmhbM Research cuts story featuring Whitney: Emory University breast cancer study one of thousands losing grants amid budget cuts Read More: Treatment Tips & Questions to Ask Your Medical Oncology Team Understanding Genetic Testing for BRCA1 and BRCA2 Mutations Empowering Yourself: Questions to Ask Your Doctor After a Breast Cancer Diagnosis Breast Cancer in Young Women: Common Questions Answered Why a Second Opinion Matters for Breast Cancer On the Podcast: Breast Cancer Conversations Breast Reconstruction and Plastic Surgery Explained: Expert Insights from Dr. Thomas Francel Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events
- Dear Me,
By Tricia Hammack Dear Me, I see you—standing in front of the mirror, trying to recognize the woman staring back . Your body is tired, worn from the fight you never asked for. Your chest bears the scars of survival, and yet you wonder if that survival has cost you your worth. You ache not just from the treatments, but from the silence, the emotional abandonment, the sharp loneliness that crept in where love was supposed to live. You were raising two boys, pouring out everything you had while barely holding yourself together. And through it all, the one who promised to be your partner, your comfort, made you feel ugly, unwanted—less than. He made you question your beauty, your value, your enough-ness. But I’m here now. And I need you to know something he couldn’t show you—something even you struggled to believe: you are not what he made you feel . Scars do not diminish you. They are proof of what you endured, and how deeply you loved your children, your life, yourself—even when it didn’t feel like love. Every inch of you carries a story of grit, grace, and unshakable strength. Ten years later, I’ve walked through the wreckage and found something sacred: peace. No longer tied to the weight of someone else’s inability to love me , I have learned to love myself. Truly. Fiercely. I may never find romantic love again—and I’m okay with that. Because the love I’ve found within myself is enough. I am enough. And you always were. So to the woman I once was—scared, hurting, brave beyond measure—I hold your face in my hands and whisper, you made it. You did not lose yourself. You were becoming. With love and deep gratitude, Me Read More: No Less of a Woman: Standing Tall Through Hardships Navigating Relationships After a Breast Cancer Diagnosis The Impact of Breast Cancer on Self-Image JOY OF FALLING On the Podcast: Breast Cancer Conversations Rebuilding Intimacy Post-Diagnosis: A Conversation on Sexual Health and Relationships with Tiffini Sharifi Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events
- Breast Cancer and Cold and Flu Season
While COVID-19 continues to concern immunocompromised individuals, the regular cold and flu season also deserves careful attention. This season typically begins in October and peaks between December and March. While colds and the flu are simply an unpleasant nuisance to most, those who are immunocompromised, such as those with breast cancer, are at a higher risk of complications. Luckily, many of the same precautions people grew accustomed to during the pandemic can also help protect you from and limit the spread of colds and the flu. These precautions include: Wearing a face mask Staying home when you feel sick Regular hand washing Getting an annual flu shot if your recommended by your doctor Explore the resources below for more information on the importance of vigilance and viral protection for breast cancer patients during cold and flu season, plus advice for if you do get sick. From SurvivingBreastCancer.org Nutrition Guide For Breast Cancer The right nutrition and exercise can help support your immune system to avoid colds and the flu. Read more for suggestions of foods that can boost your immunity. Read More. From Around The Web Cancer Patients and the Flu: What You Should Know ( MD Anderson Cancer Center ) “The biggest concern [around the flu] is that cancer patients are at a higher risk of developing serious complications if they do get the flu. So if you have cancer and start experiencing symptoms like a fever, runny nose, sore throat or coughing — especially if you have a compromised immune system — see a doctor right away. There’s a good treatment for the flu, but it has to be administered early, within 48 to 72 hours of the onset of symptoms. If you suspect you might have the flu, you should also be checked for other viruses.” Oseltamivir, sold under the brand name Tamiflu, is safe for everyone who has tested positive for the flu, including cancer patients. Additionally, it’s safe for patients with any type of cancer to get the flu vaccine. However, the vaccine doesn’t work as well among cancer patients as it does in those without cancer, particularly those on active treatment. “It’s also important for cancer patients to get the shot, as opposed to the nasal mist, because the mist is a live-attenuated vaccine and may actually cause the flu in immunocompromised patients and not be as effective as the shot.” Read More. The Common Cold ( CancerConnect ) “Why is the common cold important for cancer patients? The body’s primary defense against the common cold is the white blood cells that make up the immune system. Not everyone gets every cold. If you have a strong immune system, you are less likely to contract a cold virus, even if you are exposed to it. Cancer patients have weakened immune systems. Specifically, cancer patients may have abnormally low levels of neutrophils in the circulating blood, a condition called neutropenia. Neutrophils are a kind of white blood cell that helps prevent and fight infections. The most common reason that cancer patients experience neutropenia is as a side effect of chemotherapy. Chemotherapy-induced neutropenia increases a patient’s risk of infection and disrupts cancer treatment.” Read More. What If You Get a Cold During Chemo? ( Very Well Health ) “Chemotherapy weakens the immune system, making people who are undergoing treatment more susceptible to colds, the flu, or other infections. ... Infections, including a cold, the flu, and COVID, can be life-threatening for people with weak immune systems. If you have symptoms of an infection while you are receiving chemotherapy, call your doctor as soon as you start feeling unwell. ... The treatment that you receive for an infection while you're undergoing chemotherapy will depend on the cause of the infection and how severe your symptoms are. ... If you develop a cold or the flu during chemotherapy, your treatment might be delayed while your doctors focus on treating the infection. Patient safety is important during chemotherapy, and doctors do not want to risk making the infection worse by continuing a treatment that further weakens your immune system.” Read More. Cancer and Flu ( CDC.gov ) Cancer patients and survivors should get the flu vaccine, as should their caregivers and others 6 months and older who live with them to avoid spreading the flu. “You may need a pneumococcal shot, too. Having the flu increases a person’s risk for pneumococcal disease. Pneumococcal pneumonia is a serious flu-related complication that can cause death. People with cancer or other diseases that compromise the immune system should ask their doctor about pneumococcal shots. ” “Plan in advance with your doctor about what to do if you get sick. ... If you have flu symptoms — Stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. Your fever should be gone without the use of a fever-reducing medicine. Keep away from others as much as possible to avoid making them sick. It’s important for people with cancer to call their doctor immediately if they get a fever. If you get a fever during your chemotherapy treatment, it’s a medical emergency.” Read More.
- Clean Living: What It Means and How to Make It a Reality
Clean living. It sounds simple enough. However, understanding what clean living means, what it entails, why it matters, and how to practice it is not quite as simple as the name might imply. It can be challenging to identify a solid definition of clean living, also known as green living, because it carries various meanings. For example, some people focus only on the dietary aspect by striving to eat organic and natural foods. For others, clean living encompasses an entire lifestyle that includes everything from diet to household products to reducing their carbon footprint. The world is full of harmful and toxic chemicals. They can be found in the foods we eat, personal hygiene products, cookware and food storage containers, cleaning products, and even in clothing. Although it’s impossible to entirely eliminate contact with chemicals, many people choose to embark on a clean living lifestyle to improve their health, well-being, and the planet’s future. What Is Clean Living? Clean living encompasses multiple aspects of life, including intentional, healthy choices in diet, lifestyle, and household products. Mindfulness is a key component, with the products you choose with the cleanest ingredients promoting a healthier life. Additionally, clean living can extend beyond individual lifestyle changes, encompassing an environmentally friendly philosophy in everyday life. These practices include eliminating single-use plastic, patronizing businesses that demonstrate a commitment to the environment, holding organizations accountable for their sustainable practices, and minimizing waste as much as possible. The Link Between Clean Living and Health The health benefits of a clean-living lifestyle offer positive results for many, particularly those with chronic health conditions. Unfortunately, your home may be a source of many potentially harmful chemicals, including flame retardants in furniture or carpets, non-stick compounds in cookware, and toxins in plastic storage containers. Consequently, the scents you breathe in your own home may include chemicals known or suspected to cause serious health issues, including cancer. Some chemicals specifically influence your risk of getting breast cancer. Clean Eating Clean eating nourishes your body with healthy and nutrient-dense foods containing vitamins, minerals, high-quality protein, and healthy fats. Some of the main benefits of eating clean include improved heart and brain health, a more robust immune system, and increased energy levels. Rather than a specific diet, clean eating is about making deliberate decisions to choose whole foods—vegetables, fruits, whole grains, pulses (beans, lentils, and peas), dairy, nuts, seeds, and plant proteins—instead of more processed foods. Processed foods can contain many harmful chemicals and toxins, including the pesticides used on traditional fruit and vegetables and the hormones found in meat, eggs, and dairy. There are varying degrees of clean eating models. Some clean-eating advocates strive to avoid all traces of added sugar, high-fructose corn syrup, preservatives, artificial colors and flavors, and other additives. While admirable, this rigid diet is difficult for most to adhere to long-term. Clean Environment Research shows that the air inside most homes, workplaces, and other indoor places is often more polluted than the air outside . Many factors contribute to this unhealthy atmosphere, but chemicals in cleaners, detergents, air fresheners, and candles can be the culprits. Keeping homes, schools, and workplaces clean is vital to stop the spread of germs, viruses , and bacteria that put those with compromised immune systems, including cancer patients, at risk of serious illness. Unfortunately, many household and cleaning products often include harmful chemicals. Even so-called “green” or “natural” products may contain ingredients that can cause health problems. Fortunately, you can limit your exposure to these potentially damaging elements, but doing so requires close monitoring of ingredients. Federal and state laws don’t require companies to list the ingredients in cleaning products, making it challenging to determine whether a product contains chemicals linked to cancer or other chronic health conditions. Many cleaning products contain industrial chemicals with ingredients linked to breast cancer . In addition, several ingredients used in cleaning products may include, or be contaminated with, chemicals linked to breast cancer. Clean Personal Hygiene Many grooming and beauty products—shampoos and hair care products, shower gel, face creams, and makeup —contain Endocrine Disrupting Chemicals (EDCs), which can affect your hormone system. These chemicals are often used to prolong shelf life and as fragrance solvents. While many chemicals and contaminants in cosmetics and personal care products pose little risk to consumers, some have been linked to severe health problems, including cancer. In fact, nearly 600 cosmetics manufacturers have reported using 88 chemicals in multiple products that have been linked to cancer, congenital disabilities, or reproductive harm since 2009. How To Get Started With Clean Living Transitioning to a clean-living lifestyle is a process that takes time and patience. While you could make sweeping changes to modify your entire lifestyle, this strategy is not attainable for most. Instead, try making incremental life changes, learn as you go, and build on your successes. To get started, prioritize what’s most important to you. Is your diet your biggest concern? Are your cleaning products making you sick? Are you experiencing constant skin breakouts from personal care products? Take small steps to tackle the issues affecting your life the most. A useful skill to develop is learning to read and understand labels. Warning: the ingredients you find on labels will probably shock you. If you don’t know what the chemicals and other ingredients are (and most of us don’t), look them up at Environmental Working Group (EWG ) or ThinkDirty to learn more. 5 Simple Clean Living Tips #1 Clean Eating While there are several definitions for clean eating , most people agree that clean eating consists of eating whole, unprocessed, nutrient-rich foods when possible. Rather than trying to revamp your eating habits and meal plans overnight, you can begin by working toward the goal of including more of these types of foods more often. The following tips can help you get started: Avoid processed foods and artificial ingredients as much as possible. Incorporate more whole fruits and vegetables into every meal. Buy organic food whenever possible. Avoid highly processed foods with long lists of ingredients. If purchasing packaged foods, choose items that have five ingredients or fewer, especially with ingredients you can recognize and pronounce. #2 Choose Safe Cookware It’s counterproductive to embark on a clean eating program if your cookware isn’t safe. Non-stick cookware, such as Teflon , promised convenience and the ability to save consumers time and money, but it also includes harmful chemicals. Instead, cook with any of the following safe cookware options: Cast-iron cookware Ceramic cookware Stoneware Corningware and glass cookware Stainless steel cookware #3 Avoid Plastic Food Storage & Food in Tin Cans Don’t spoil the benefits of clean eating by making unhealthy food storage choices. For example, BPA (bisphenol A) contains hormone-disrupting chemicals that can mimic estrogen in the body, potentially affecting brain development, disrupting hormones, and negatively impacting fertility. You should avoid any plastic containers and food that comes in packaging containing BPA. Unfortunately, research has shown that BPA alternatives can be just as harmful or even worse for your health! It’s especially important never to microwave food in plastic containers since heating plastic expedites the release of harmful chemicals. You can ease into this change by starting with one replacement, such as swapping plastic food storage containers with glass alternatives. #4 Swap Household Cleaners Another way to avoid harmful ingredients is to swap out commercial household cleaners for more natural and eco-friendly options. Amazingly, there are no government regulations in the US that require companies to disclose their complete ingredient list due to proprietary trade secrets. However, there are still ways to avoid bringing toxic chemicals into your home , including the following methods: Switch to microfiber for an easy, safe, and non-toxic way to clean your home without any chemicals at all. You can save time and money while also cutting down on waste since microfiber cloths last for years while replacing cleaning solutions and paper towels. Utilize natural cleaning solutions for more stubborn stains and situations. One effective and safe option is to use vinegar, baking soda, lemon juice, and fragrance-free liquid soap. In addition to eliminating harsh chemicals, DIY cleaning products can be a big money saver. #5 Review Personal Care Products According to the EWG , the average woman uses 12 products containing 168 unique ingredients every day. Skin is the body's largest organ, and the products used on your skin can be absorbed into your bloodstream. Therefore, the risk of health harm is greater when you use more products. To minimize negative effects from personal care products, reduce the number of products you put on your body, including makeup, body lotion, soap, body wash, and shower gel. Avoid all products with fragrance, which is a blend of ingredients that can contain up to 4,000 undisclosed ingredients, including harmful toxins such as phthalates. Additionally, many of the chemicals used to make fragrances can cause endocrine disruption, asthma, and even cancer, and should be avoided altogether. Count on us to keep you informed as science uncovers information on how clean living can help you be as healthy as possible. In the meantime, explore our guidelines for a healthy diet , and become part of our empowering community, including our Breast Cancer Survivor & Friends Meet and Greets . We’re always here for you! SurvivingBreastCancer.org Resources & Support: Our Podcast Our Weekly MeetUp Online Support Groups Free, Weekly Events
- Hope for Inflammatory Breast Cancer Patients
Today, there’s a wealth of information available about breast cancer symptoms—e.g., a lump in your breast being foremost, breast skin irritation, dimpling, a new lump under your arm, redness, etc. Women are now being encouraged to know what their breasts look and feel like, using monthly self-exams and regular check-ups with their healthcare provider, so that they can identify any changes. However, inflammatory breast cancer (IBC) rarely appears as a painless, hard lump in the breast or underarm. Unlike other types of breast cancer, with inflammatory breast cancer—a rare, but the most aggressive form of breast cancer—there is no lump to detect during a self-examination or a mammogram. The Look and Feel of Inflammatory Breast Cancer IBC can manifest in the form of several abnormal symptoms, including: Sudden swelling of a breast, which may look red, or feel itchy or warm Ridges or raised or pitted marks (like the appearance of an orange peel) on breast skin Nipple retraction or discharge Swollen lymph nodes in the underarm or above the collarbone What Makes IBC Different? IBC accounts for only a tiny fraction of breast cancers but can spread more quickly than other types of breast cancer. IBC also tends to show up in women younger than other breast cancers and is more common in women of African descent . With IBC, cancer cells form in the breast, blocking the lymph vessels in the skin and causing infection-like symptoms instead of one solid lump, so it’s often diagnosed as an infection rather than breast cancer. In addition, because IBC isn't found by mammography or ultrasound, it’s often in an advanced stage, with approximately one-third of inflammatory breast cancer patients diagnosed at stage 4. Diagnosing IBC Diagnosing inflammatory breast cancer can be challenging and is often misdiagnosed as a skin infection of the breast. Multiple tests are used to diagnose IBC, including: Digital Mammogram Including 3D Digital Breast Tomosynthesis (DBT) uses X-rays to create a 3D rendering of the breast, allowing it to be viewed in layers or “slices.” Breast MRI uses radio waves and strong magnets—rather than X-rays—to create detailed breast images. These images can locate and diagnose breast tumors. Breast Ultrasound uses high-frequency sound waves to detect abnormalities in soft-tissue organs like the breast. Diagnostic Surgery or Biopsy removes a small portion of the breast tumor to be analyzed for hormonal markers or genetic mutation. PET or CT Scan , a positron emission tomography (PET), or computed tomography (CT) scan may be used if cancer is suspected of spreading to other parts of the body, like the lungs, brain, or bones. There is still no diagnostic code for inflammatory breast cancer. Treating IBC Inflammatory breast cancer is considered locally-advanced breast cancer. It is typically treated with several types of treatment, including: Chemotherapy: Drug treatment uses powerful chemicals to kill fast-growing cancer cells in the body. For people with IBC, chemotherapy is usually used before surgery (when known as “neoadjuvant” chemotherapy) to reduce the size of tumors. But chemotherapy may also be necessary after surgery (when it is known as “adjuvant” chemotherapy) to eliminate any remaining cancer cells. Surgery: Removes cancerous breast tissue is usually the next stage of treatment for patients whose tumors respond well to neoadjuvant chemotherapy. Typically, this involves a mastectomy—the surgical removal of the entire breast and the lymph nodes under the adjacent armpit. Once treatment is complete, patients may wish to undergo breast reconstruction surgery. Radiation Therapy: Also known as radiotherapy, uses high doses of radiation to kill cancer cells and shrink tumors. It is typically used following surgery to eradicate any remaining cancer cells. If a patient’s IBC does not respond well to neoadjuvant chemotherapy, radiation therapy may be used before surgery to reduce the size of the tumor. Hormone Therapy: Such as an aromatase inhibitor or Tamoxifen, is usually used after surgery in breast cancer cells that may be hormone receptor-positive (HR-positive). Hormone therapy medications can target HR-positive cancer cells either by reducing the body’s production of the relevant hormones or by blocking the hormone receptors on cancer cells. Targeted therapies: Used to slow or stop breast cancer cells’ growth with high levels of human epidermal growth factor 2 (HER2), a protein that helps HER2-positive cancer cells grow. Immunotherapy: Also called biologic therapy, uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Hope Is on the Horizon IBC is rare—accounting for only one to five percent of all breast cancers —however, it remains one of the deadliest cancers, accounting for 10 percent of all breast cancer deaths or 4,200 people each year. However, women with IBC now live about twice as long after diagnosis as their counterparts did in the mid-to-late 1970s. As a result, researchers are working diligently on new drugs and treatment therapies. For example, at NIH in Bethesda, MD, Dr. Sandra Swain is researching the experimental anti-VEGF antibody (Avastin) effect on advanced breast cancer. Additionally, research is being conducted to distinguish the molecular fingerprint of IBC to understand better why IBC is biologically different from other cancers. For example, figuring out the differences in gene expression patterns between normal and IBC cancer cells may reveal what sets IBC apart from other cancers. Unlike other breast cancers, IBC is not inherited, so discovering IBC genes will not necessarily help predict who is more likely to get the disease. However, finding specific genetic markers in the tumors of a woman newly diagnosed with IBC could be a valuable tool for designing treatment plans. Researchers at Duke University are experimenting with the use of heat therapy (hyperthermia) to deliver chemotherapy drugs encapsulated in tiny fat bubbles (liposomes) to tumors in the fight against IBC. The heat also triggers the liposomes to release the drugs and settle inside the tumor. Since the drug is delivered only to the tumor, doctors can use higher doses of chemotherapy—30 times more—to kill cancer cells without poisoning other body tissues. You’re Not Alone A diagnosis of inflammatory breast cancer can be scary, overwhelming, and isolating. But, we’re here for you every step of the way, with educational resources , a caring online community, and anything else to give you strength and hope. You are never alone when you become part of our global community . Instead, you’re surrounded by others who have been touched by breast cancer. RSVP for our next IBC MeetUp here . SurvivingBreastCancer.org (SBC) is dedicated to supporting those affected by breast cancer and their families. SBC provides an educational and virtual community platform to help breast cancer patients, survivors, and their families navigate prevention, diagnosis, treatment, and beyond. Check out our resources or consider donating today! SurvivingBreastCancer.org Resources & Support: Our Podcast Our Weekly MeetUp Online Support Groups Free, Weekly Events
- Dealing with the Stress of Having Metastatic Breast Cancer (MBC)
Dear Kristen, How do you deal with the stress of having metastatic breast cancer (MBC)? I am always anxious and some days are overwhelming. The unknown of scan results is too much for me! Dear Reader, Let me just say, from one woman with MBC to another, that Stage IV Metastatic Breast Cancer is a freaking scary diagnosis, and it’s no wonder you feel stressed and anxious. Staying calm, optimistic, and feeling safe now and then takes all the courage and resilience we can muster. It calls on our inner heroines, the parts of us who feel the fear but do what’s needed anyway. I believe what we are called to do is nothing short of heroic. So when you’re feeling scared or vulnerable or helpless in the face of diagnostic tests and cancer treatment, here are some ideas for things you can do. I have road-tested every one of them in the four years since my own diagnosis, and can tell you they work. Some days they’ll work better than others, and you might need to use a lot of them when “scanxiety” strikes, but I promise they helped me, and I hope they help you too. Invoke Your Inner Heroine Think of yourself as being the main character in the story of your life, and what a wonderful heroine you are! You have made it this far because of your inner strengths, your wits, and your ability to solve problems. Perhaps you’re like the mythological goddesses or Amazon warriors; maybe you possess the qualities of Amelia Earhart or Joan of Arc, who is reported to have said, “I am not afraid. I was born to do this.” You can do this too. Remind Yourself of Past Feats of Bravery We’ve all done some scary things in our lives, whether it was speaking in front of a group or cutting our hair short for the first time or fighting in Afghanistan. Look through your life and write down a few times when you were courageous and put the list somewhere you can refer to when fear strikes. Then straighten your posture, take a deep breath, and keep moving forward. Do New Feats of Bravery As a woman with MBC, you’re already doing brave things every single day, but you can increase how courageous you feel by doing scary things unrelated to cancer. Speak out about a cause you believe in; have a difficult conversation you’ve been avoiding; cut loose from a draining relationship. Doing so will remind you that you have personal power you can use whenever you need it. Outwit the Bad Guys Remember that fear is just chemicals in your body (the “bad guy” hormones like adrenaline and cortisol) triggered by thoughts in your head that result in bodily changes like shortness of breath, faster heart rate, an upset stomach, sweating, and/or chills. If you can change your thoughts, you will change what’s happening to you physically, easing these uncomfortable conditions. You don’t need to shift all the way to thinking, “I’m not afraid,” though – your body would know you were lying to yourself. But if you can think a different kind of thought – thinking of something you’re grateful for or of being loved, for example – your survival brain will relax, your breathing will deepen, and your pulse will slow. Functional MRI (fMRI) images have shown that it is almost impossible to hold anxious thoughts and gratitude in your head at the same time; they originate in completely different parts of your brain. Another trick you can use to outwit the bad guys is to go meta with your thinking. When you find yourself spinning into anxiety, imagine floating above your body and seeing yourself suffering from those scary thoughts. Offer yourself compassion for what you’re experiencing, and your stress level is likely to drop. Get the Good Guys On Your Side Fortunately, your body also produces four “happy hormones” (dopamine, serotonin, oxytocin, and endorphins) that you can trigger by doing a bunch of enjoyable things. They include: Laughing – watch a funny sitcom or videos on YouTube, TikTok, Instagram; talk to a funny friend Listening to music that makes you want to sing along or dance Playing binaural beats through headphones – these are sounds designed to alter your brainwaves so that they are calming instead of frantic; you can find a sample here Meditating for as little as five minutes – imagine your thoughts as bubbles floating up and away from you. SBC actually has a whole library available with on-demand meditations. Spending time with a loving pet Spending time with a loving human Spending time in nature Getting enough restful sleep by establishing a calming bedtime routine, going to bed at the same time each night, turning off your phone, and darkening your room as much as possible Getting a massage Breathing relaxing fragrances like lavender or whatever scent you love Getting some exercise – even a short walk will help boost your mood and happy hormones Taking certain natural supplements – with your doctor’s permission, try tyrosine to increase dopamine, green tea extract to bump dopamine and serotonin, and tryptophan for more serotonin Taking prescription medications – if all else fails, talk to your doctor about medications to help you sleep or to relieve overwhelming anxiety and depression Join a Band of Other Heroines Being in a state of fear can make you feel like you’re alone in your struggle, but in fact, there are any number of communities you can join where the women will know exactly what you’re going through. There is a wonderful virtual community open to you through Surviving Breast Cancer (SBC), from the Thursday Night Thrivers Zoom group (with breakout sessions specifically for the MBC community), to a book club, Zumba classes, art therapy, and so much more. There are even special online activities just for us MBC’ers. To stay up to date on all that’s available, just read the weekly SBC newsletter or go to the website . There are a number of Facebook groups specifically for women with MBC as well as groups for those on different chemotherapies. Your oncologist’s office may also have information on in-person groups that could offer a local MBC community. ~ ~ ~ We don’t get to choose what happens to us, but we get to choose how we write ourselves into our stories. Why not choose to be the heroine who sees the truth, acknowledges the hard path ahead, and rises to travel it with grace and courage and a band of supportive women at her side? Wishing you all the strength in the world, and hope to see you in the SBC community. Kristen xo

























