By Aneela Idnani
Warning: This blog contains medically graphic images and nudity which may be triggering or upsetting for some.
“BREAST CANCER SUCKS, WHAT GOOD CAN WE SUCK OUT OF IT”
I have the best kind of breast cancer: early stage, slow growing, and positively life- changing. After a 20-year tango with trichotillomania (a mental health condition affecting 1 in 20 people, where emotional imbalance triggers compulsive hair pulling), I understand that our bodies communicate with us - to get us to see, think, feel, and act differently…for the better.
So when my breast cancer diagnosis came knocking at age 41, I opened the door, invited it in for tea, and asked, “Why are you here? What do I need to change?”
I, of course, already knew the answer, and was working toward it without this intervention from the Universe. But work, kids, friends, and volunteer obligation after volunteer obligation kept pushing it further down my to-do list:
-Take better care of myself by eating healthier and exercising more,
-Stop “should-ing” all over myself,
-Stop “doing” to the point of exhaustion,
-Stop taking on more just because I could,
-And just let myself BE.
A week before my breast cancer diagnosis, I was poised to add a few new projects to my already-full plate. My need to “always be doing” stems from core negative beliefs that “I am not enough,” or “I am not doing enough.” I trust that my breast cancer diagnosis is the Universe’s cheeky way of encouraging me to slow down & stop adding to my plate, to take care of me, & to focus whole-heartedly on that constant, but quiet, voice in my heart telling me to take action on what I really want and stop pushing it off.
My Annual Physical
In November 2021, I went for my annual physical. I’m not one to have a “family doctor,” rather bouncing from doctor to doctor as needed based on convenience of scheduling and drive time. I connected with this doctor when I met her back in the Fall of 2020 when I needed help with a new diagnosis of Premenstrual Dysphoric Disorder (PMDD), a mental health condition of anger triggered by the hormonal changes of my menstrual cycle. Her clinic was a 5 minute walk from my house. When she moved, I followed her to her new clinic, a 20 minute drive away.
After the routine pap smear, she looked up and asked, “You turned 40 this year, right?... You should start your routine mammogram screenings. We can do those here, just make an appointment on the way out.”
Ever the people-pleaser, I did as I was told.
The radiologist who smooshed my breasts between two cold, plastic plates said my breast tissue was very dense. She suggested I go for an ultrasound to get a better baseline for future comparisons, “totally routine,” she assured me.
With winter holidays fast approaching, I could have brushed it off and waited another year - until my next annual check up, but ever the people-pleaser, I did as I was told.
As I chatted with my ultrasound technician, she went from cheerful to “click, click, click.” I stretched my neck to see what looked like an old school TV with no signal - all “snow” except for a tiny pocket of clear, blackish-gray.
I waited for minutes that seemed like hours to talk to the radiologist via speakerphone. “We see a small suspicious area in your left breast...you'll need to come back for another ultrasound and biopsy to confirm what it is,” she said.
Though I was trying to keep my typical anxious thinking at bay, my first thought was financial, “Is my insurance going to cover this!?,” I whispered in my head as I held back tears in my eyes. At this point I still was thinking, “this is all routine…this is gonna be nothing…my tissue is just too dense…this can’t be happening to me.” I was in denial and I think my anxious brain chose money over health as its focus because it was an “easier” worry - I had insurance and it was going to be “good enough” to support me through this.
The Diagnosis
Two months later, on February 2nd, 2022, after winter break travels and COVID hit our house, I was finally able to get my biopsy. On February 3rd, 2022, as I tried to keep it out of mind, the lab electronically spilled the beans by releasing the detailed report to my digital e-health account.
My mind got messy. I held onto my anxiety in silence for 24 hours wondering if I was reading the lofty medical terminology correctly. “Invasive Ductal Carcinoma”....“Positive…”
I held my two young boys, ages 5 & 9, a little tighter that evening because I was feeling all the feels. As we watched “Encanto” videos on repeat, the tears trickled and I tried my best to hide them.
I wish our healthcare notification system shared medical reports AFTER the doctor discussed the analysis. However, it is a federal regulation to "ensure greater transparency and personal access to our medical records" -- at the detriment to our mental health!
The next day, February 4th, 2022 - “World Cancer Day,” the radiologist called and confirmed the details: I had a small growth in my left breast. My routine screening was now cancer.
After my panic attack set in, I took a breath and reached out to a friend in New York who is a radiologist. She shared a bit of what to expect next in the process and even reviewed my scans and reports. She shared how many friends in the past few years have been diagnosed. This is what early & often mammogram screenings can do: save lives…
…Hopefully.
My Breast Cancer Tour
As I started my tour of Minneapolis breast cancer surgeons, plastic surgeons, oncologists, and radiologists, I kept hearing “This is the best breast cancer to have.” I was interviewing for my care team, and making sure I answered these questions before choosing:
-Who heard me?
-Who spoke to me in a way that made me feel safe?
-Who didn’t sugar coat this “ish”?
My initial tests showed that the tumors in my left breast were:
*Invasive Ductal Carcinoma (IDC) - the most common kind, which means the doctors know more about them
*Early stage (1A) and small in size (1.3cm), meaning it hadn't spread
*Growing slow, with a low Ki-67 score of 8%
There was hope that this was treatable with surgical removal (mastectomy) and that I could close this chapter quickly!
One doctor said, "It's probably been there for years...it's just now big enough to see."
This comment triggered memories of my first pregnancy 9 years ago. While breastfeeding, I got mastitis. I had to be aspirated multiple times to surgically drain the abscess infection. Perhaps all those needle pokes 9 years ago triggered aggressive cellular growth cycles in the area?
Thinking back to my dad’s battle with cancer - a year prior, he had slipped on ice and broke the bones in his arm. His cancer? Leukemia, which is abnormalities of the bone marrow. While it is only two anecdotes it makes me wonder if trauma to an area of the body increases the chance of cancer. I hope this cause/ effect is studied more in future.
Then came confirmation that the cancer was ER/PR positive and HER2 negative. These tumor markers indicate that the cancer is "fed" by estrogen. My jaw dropped. For the past year I was on birth control due to the PMDD diagnosis. I was feeling positive emotional changes with regard to the PMDD, but, I wondered, “was the birth control, by keeping my estrogen levels steady, rather than an ebb and flow, feeding my cancer!?” I don’t want to know the answer, but again, I hope this cause/ effect is studied more in the future.
Knowing the small tumor was in my left breast, I was looking at a lumpectomy. But, I was still sent for an MRI as a precautionary step to ensure there were no other tumors in either breast.
Magnetic Resonance Imaging (MRI) is a noninvasive diagnostic technique. After being injected with a radioactive dye and laying in the tube of the MRI machine, a magnetic field and computer-generated radio waves create detailed images of the organs and tissues.
My MRI "lit" up a few more suspicious areas. But to know how suspicious, I had to go back for another ultrasound and biopsy that provided more detail: the tumor was 1 "large tumor" (1.3cm - still small) and a scattered cluster of 4 more smaller tumors. (Perhaps each needle prick of the mastitis aspirations!?) What was one a simple lumpectomy to get 1 cancerous lump out, was now a mastectomy - full removal of the breast.
Reconstruction or Going Flat
Despite being a poster child for early detection, it still felt drastic. Whether the cancer is early stage or advanced, surgical removal of the breast tissue seems to be the primary solution. I pray for a day when we have a less extreme solution, and I pray for the doctors, patients and researchers who get us there.
Until then, I had no choice but to accept the shift from lumpectomy to mastectomy, while still having to choose whether or not to remove my right breast, and if I would do reconstruction. If I kept my right breast, I'd have to undergo annual “surveillance” to ensure a new breast cancer did not arise. With my mental health history, I decided that would cause too much anxiety. I also wanted symmetry.
I grappled quietly in my mind with what to do after removal. I could undergo additional surgeries to reconstruct my breasts, or I could join a growing group of women who opted to “go flat.” I sat with the question, "Am I still a woman without my breasts?" and I worried what my husband would say.
I thought about my childhood. Gender never mattered. I was a tomboy and more comfortable playing baseball and legos with the boys than whatever the girls were playing. When my elementary school librarian would not let me read Hardy Boys, I was confused and angered... I could only check out Nancy Drew. When I started working in my 20s, I never felt like the only woman in the room, because I wasn’t! Whether it was accounting or advertising, I was surrounded by strong female leaders. I felt no sense of loss at the thought of removing both my breasts and no desire to go through the added surgeries and potential infections of getting implants.
My Decision
I decided “Am I a woman without my breasts?” was the wrong question. My breasts never made me who I am: human. Instead, the question became, “What will get the cancer out and get me back to life the fastest?” The answer: aesthetic flat closure (AFC), the medical term for going flat. This procedure would be 4 weeks of rest and recovery versus 6 weeks for reconstruction. Also NO additional surgeries!
In the past, women who opted for AFC were either very old, or very sick. The end result of their surgeries were not the prettiest. It was almost as if doctors thought “my patient doesn’t care, so why should I even try to make the closure look nice,” or there would be doctors that thought they knew better and would leave extra skin “in case” a woman changed their mind and wanted to do reconstruction later, at the detriment to their mental health and ability to reconnect with and accept their new body.
But in recent years - as early screenings lead to early diagnoses, there has been a cultural movement amongst younger women to go flat AND want the closure to look aesthetically pleasing. However our healthcare system has not caught up with the trend. A plastic surgeon is not covered by insurance for an aesthetic flat closure, only for reconstructive surgery AFTER the breast/oncology surgeon performs their expertise of breast tissue removal.
This is why it was important for me to find a breast surgeon that gave me confidence in their ability to perform the AFC operation - and in their ability to adhere to my wishes. Here again, I hope the healthcare system will catch up to patient needs. I would really love to understand why insurance companies are OK with putting me under again and going through pains of a subsequent surgery with a plastic surgeon for “touch ups” (which is covered by insurance!).
Post- Surgery and The Mental Toll
The first few weeks post-surgery threw me into a deep depression. It was the showering that broke me. Seeing the scabs made it all too real and finite. As did the hematoma on my right side (see below). My breast was gone, but I was left with this giant black and blue blood clot that I was told would reabsorb with time. It was such a monstrosity of a deformity that left me so angered. “How could my doctor do this to me?” I thought. Of course, she didn’t. I know she saved me and Every body heals differently.
My tears flowed faster than the shower. I refused to let my mom, sister, or kids see what had become of me. But I forced myself to welcome my husband’s help as I could not shower alone, physically or mentally. I nearly fainted out of exhaustion the time I did try on my own. Sameer was and is my rock, lifting me out of the ditch my mind was driving me toward.
During the first week post-surgery, friends and family would call to check in. When they asked “How are you feeling?,” I would not answer with the truth: Guilty.
Watching my dad battle leukemia, I've seen what real “big C" Cancer can do. The toll the sickness took, the toll the chemo took. Seeing him tied to machines to help him breathe, so weak he couldn't move.
I'm not THAT kind of sick.
After seeing 3 radiologists and 3 oncologists, I received the good news that my case of micrometastases in the lymph nodes post surgery is “too small and gray area” and my oncotype score of 10 is too low for the research to direct a strong recommendation for either radiation or chemotherapy.
My breast cancer, contained to my now non-existent left breast, was cancer with a “little c.” There should really be another name for it so as not to confuse others who immediately take the leap that “cancer” means “chemo.”
The worst of it is the mental toll that it's taken on me. I was ridden with guilt as friends and family took that leap, especially those that saw my dad’s journey & then realized, “Oh it’s not that bad.”
I recognize that this cancer is different from the hardship others endure. I'm not "big sick" -- I just have “a little sick." While I am blessed to not have to undergo additional treatment, I will have to take tamoxifen, an estrogen-blocking pill (hormone therapy), to keep the cancer at bay.
My recovery from trichotillomania taught me that health is a spectrum and comparing my highs or lows to others’ experiences is a downward spiral.
Cancer is not a contest.
Cancer is triggering though! In the midst of medical appointments, researching my surgical options, and sitting with uncertainty, I found my trichotillomania urges spiking, causing my hands to play with my eyebrows and lashes again.
Trichotillomania recovery has never meant being "pull free," to me. This would mean complete abstinence from the act of hair pulling to self soothe. Trichotillomania is a medical condition. “Pull free” is like asking a diabetic to “just stop” having diabetes. Or hey you, reading this article, “just stop” having breast cancer.” Obviously not possible, but we can take action to manage these conditions, and reduce the space they take up and the hold they have on us - little by little.
Rather, when it comes to trichotillomania, I strive for shame-free and being "pull less" - a few hairs here or there after highly triggering moments, and then reigning back control by taking care of myself in healthier ways.
My brain needed lots of self-soothing after finding out I had breast cancer, and it took to it’s old ways: pulling out my eyebrow and eyelash hair in order to meet that need. But this is what control over trichotillomania is: awareness to make space for grace, a few hairs between my fingers, and then saying, "enough," and having the strength to move on to a healthier strategy that shows my self love.
What I Have Come To Believe
If you are facing a breast cancer diagnosis, or any adversity really, here is what I have come to believe through this experience and the experience of turning my trichotillomania pain into my purpose.
Before you read this, I will fully acknowledge that some of these points may anger you. Sit with it. Do not deny yourself any feelings of anger, confusion, frustration. Do not swallow those feelings and slap on a cheerful veneer. Also, do not allow those negative feelings to consume you. Please do not take these strategies for “toxic positivity.” Rather, these are about mindset shifts that allow you to accept your circumstance, but not be defined by it. Trust me, it takes effort to believe in and act on these strategies and there are certainly days that I don’t put that effort in and sit with my sadness and grief and frustration! But the more I do, the better I feel and the better I feel, the more I act with love instead of fear. Take.your.time:
Turn the gloom into bloom. It is not easy to give up control and “go with the flow” on a breast cancer journey. But we must try. The more we push back - questioning the necessity, the absurdity and the drasticness, the more we fill with sadness and anger. When we accept the situation, we can face the future with hope.
Look beyond the ditch. In journalist Frank Bruni’s memoir, he shared a friend’s anecdote - when learning to ride a motorcycle the instructor said, “Don’t look at the ditch, else you’ll go right in.” It’s the same with our depressive thoughts - we can’t look at them for too long - we must look beyond to where we want to be.
Embrace “thoughts and prayers.” Thoughts and prayers get a bad rap.
If something bad happens and you are in a position to act, then thoughts and prayers are not enough. For example, politicians have the power - and responsibility - to act and set policies that prevent a bad thing from happening again and to ensure those policies do more good than harm going forward.
But, if you are a friend and something bad happens, like, say another friend has tumorous growths in their body and they have to remove their breasts to get better, sometimes your only course of action is thoughts and prayers.
So request and receive that positive energy, resonating through the universe and reaching you in your time of need. Thoughts and prayers are healing powers.
Make lemonade from our melons. Adjusting to a new normal is a trying process from surgery to recovery. When things go wrong in our lives we have a choice in how to respond. When my “melons went bad,” I could - and did cry - as each breast surgery and oncology visit triggered memories of the loss of my dad to cancer. I could - and did get angry - that I had to go through this pain, yet another pain in the multitudes of pain in my life.
But that “why ME?” attitude is not one that I wish to invite in any longer. Nor the endless suffering that negative thinking brings.
We must find purpose in our pain.
All the pain I’ve gone through - my dad’s death, to my battle with trichotillomania, to incredible heartbreak, and other painful events I still struggle to talk about - have brought me out farther and stronger, than I could have ever imagined. Only by embracing the pain, instead of pushing it down, by acknowledging its existence, making space for it in my life.
But how do we find purpose? How do we not go down the tangent of lamenting “why ME?...What did I do to deserve this?”
By shifting emphasis, with curiosity: “WHY me?...What am I supposed to make of this?” And for us with breast cancer, we have our melons and we gotta make lemonade.
Allow time to heal. No one wants to hear “time heals” when they are in pain and suffering, but there is truth. Space, time, and distance make the feelings you are feeling feel smaller.
It took almost 20 years to find healing from the loss of my dad, but I got there because I did the work my psychologist asked me to: “Identify 5 good things that came from his loss.”
When it came to my breast cancer, I was so angered by the hematoma. Now 5 months later, it’s nearly fully reabsorbed AND the scarring on my right side is barely noticeable as compared to my left, which is still bright red. Now, I’m wishing I had two hematomas! Ha, here I am wishing for more suffering upfront, to allow for greater healing in time!
Listen to the whispers of our hearts. If we don’t listen to our heartsong, the Universe will continue to throw lightning bolts and intervene. If you are pushing down the voice in your heart, I implore you to grab it by the hand and pull it back up to a decibel you can hear. Listen to your small, inner voice - the one telling you what you REALLY want, else the universe will keep trying to get your attention! And if it gets to the point of the Universe intervening, like, say, a breast cancer diagnosis, remember that crying is 100% part of the process, and so is looking at that intervention with hope and possibility.
As I moved out of surgery and back to life, I moved back into my old ways - taking on more than I really needed or wanted to, but should do because I could. And you know what happened? The Universe intervened and threw a new lightning bolt.
I got COVID.
My body, so focused on healing my chest post-surgery, had no fight left to give the virus. I was hitting 103 fevers, sweating, and shivering simultaneously, and hallucinating. I didn’t listen to the cancer. I had to listen to the Covid. In a literal fever pitch, I resigned from two non-profit boards via text and let go of the last few extracurriculars that no longer matched my heartsong.
With this breast cancer, I say “no” and declutter my plate of external obligations that are fueled by core negative beliefs of not doing or being "enough." With this breast cancer, I take the opportunity to rest and reset:
*To reignite the love + laughter in my marriage
*To build stronger bonds with my sons
*To connect with my trichotillomania community with authenticity and courage
*To strengthen friendships that have weathered from distance
*And to carve space and time to really focus on what my heart has been whispering
I hope my story and new way of seeing what breast cancer can bring to your life inspire you to listen to the whispers of your heart. Please feel welcome to connect with me via instagram at @aneelaidnani. I am wishing you love, strength and awareness in all you are and all you do.
Thank you for sharing your story, Aneela. SBC loves you!
Connect with Aneela here:
Twitter: @ak310i and @habitaware
Instagram: @aneelaidnani and @habitaware
SurvivingBreastCancer.org Resources & Support:
