Updated: Sep 5
By Tammy Uhl
In July 2011, at my first routine mammogram at the age of 40, my healthcare team said there was a calcification they wanted to keep an eye on and asked that I have a mammogram every six months. I discovered a lump in my breast in June 2013, but I was scheduled for a six-month mammogram in July, so I knew they would look at it then. At that July appointment, they said all was clear, and I could go to once-a-year mammograms from there on out.
At a routine physical six months later, I asked my primary care physician about the lump, which now was visible on my skin. She looked back at the images from the mammogram and said there was nothing abnormal there so it most likely was a benign cyst, which I could get drained if I wanted to.
I decided to make an appointment with the surgeon to get that accomplished so I wouldn’t be bothered by it any longer. When the surgeon inserted the needle to drain it, he said there wasn’t any fluid to be drained. He was very confident it was a fibroadenoma, but wanted to do a biopsy just to be certain.
When we met at the hospital the following week, the mood was light as we were told it was nothing to worry about, and the surgeon even said he would make sure the biopsy scar was done in such a way that it would be hard to see after it healed. He had arranged for a pathologist to be in the operating room so we would not have to wait for the results, and I was put under for a short nap.
When I woke up from the biopsy procedure, the anesthesiologist was sitting next to my bed holding my hand, which I knew was not at all the norm. I looked out the sliding glass door of the room and saw the surgeon talking to my husband. As soon as I focused in on my husband’s face, I immediately knew it was not good news.
On February 18, 2014, at the age of 42, I was a wife of 17 years, a mom to three young children, and I was diagnosed with breast cancer: Stage IIB IDC ER+, PR-, HER2-. I was an avid runner, watched what I ate, hardly ever drank, never smoked, and had no family history of breast cancer. And yet in the days that followed I learned I would need to have a mastectomy, chemotherapy, and radiation.
I had a unilateral mastectomy on March 13, 2014. On April 17, I had the first of four cycles of Taxotere and Cytoxan. On July 29, I began five weeks of radiation. When I eventually walked out of the radiation oncologist’s office on September 4, 2014, I was confident the worst was behind me.
I was reassured by all my doctors that I would one day look back at the entire experience as just a little bump in the road. I continued to go to the gym, challenging myself to remain physically strong. I continued to train for another race, as running was great medicine for my mental health. In June 2015, 15 months after my diagnosis, I ran another half marathon to celebrate the end of treatment. With active treatment completed, I was placed on Tamoxifen hormone therapy and continued with quarterly visits with my oncologist.
Then, in June 2017, I was experiencing severe back pain. My doctor was out of the office when I called, but a PA ordered a CT. She called me the next day to tell me I had a lesion at my L3 vertebra that was suspicious for metastatic disease. An MRI was performed several days later, and the radiologist felt that it was actually a vertebral hemangioma, which is a benign vascular lesion. I didn’t know the right questions to ask, specifically to demand a biopsy to know for certain, and off I went with a referral to physical therapy convinced that all was well.
In May 2018 I began losing weight, and over the next couple of months I lost over 30 pounds. My oncologist thought I was struggling emotionally with moving past my cancer diagnosis and that I should talk to someone for mental health support. I knew that wasn’t the issue, but I made an appointment with the oncology psychiatrist, and she told me there really wasn’t anything she could offer me as I seemed to be doing very well.
Fast forward to the start of COVID in March 2020. I could no longer go to the gym, so I was doing home workouts with my youngest daughter, who plays college basketball. I was also running quite a bit outdoors. I started to have knee pain, which I had experienced in my marathon training previously, and also assumed it was due to my trying to keep up with my 18-year-old daughter’s workouts.
In May 2020, my husband accepted a new job. Our family moved to a city 130 miles north, and I needed to establish new medical care. I mentioned to my new primary care provider that I was having quite a bit of knee pain, and off I went again to physical therapy.
After three months with no improvement, my physical therapist referred me to a sports medicine doctor who was certain I had a torn meniscus and ordered an MRI to confirm. The results arrived in MyChart on the Friday afternoon of Labor Day weekend, indicating a moth-eaten pattern to my femur. Dr. Google told me this was a very bad thing. Because it was a holiday weekend, it was Tuesday morning before I could talk to anyone at the clinic.
I met with a new medical oncologist the following day. He asked me if I understood what I was facing. Obviously, I had researched quite a bit about metastatic breast cancer (MBC) since reading the MRI report, and he reiterated that statistically I could expect to live about three years. What I know now is I should have run out of his office as fast as my gimpy leg would let me. Rather, he put me in a wheelchair until I could meet with orthopedic oncology the following week, as he said there was a significant risk of fracture to the femur.
My orthopedic oncologist was a breath of fresh air. He basically gave me two options. Option one: do nothing, and stay in a wheelchair for the rest of my life. Option two: allow him to put a titanium rod in my femur. I told him obviously we were going with option two, and he said he was confident that would be my choice, and he already booked the operating room for two days later. He assured me I could live a long and active life with MBC, and he would do everything he could to make that happen.
In the following weeks, my PET scan showed that cancer had also fractured my L3 vertebra, where that so-called benign hemangioma was located. I had kyphoplasty, which is an injection of cement into the vertebra, to stabilize it. There was also an area of concern on the right hip. I had been having pain there for quite some time, but I was told it was arthritic in nature due to my years of running. The radiation oncologist decided to radiate the femur, spine, and hip. I then started on Verzenio, a CDK 4/6 inhibitor; Faslodex, an estrogen receptor blocker; and Xgeva, a monoclonal antibody used to prevent bone fractures.
In January 2022, I told my medical oncologist that my right hip was bothering me more than usual. He ordered an MRI, and based on those results he told me I had disease progression. When I spoke with my orthopedic oncologist, he wasn’t so sure it was progression of disease as he felt arthritis was playing a big part of the pain I was experiencing. We made the decision to go forward with a full hip replacement, and he would do a biopsy at that time.
Prior to the surgery, I met with my medical oncologist. He again said I had clear progression, and his recommendation was weekly IV chemo. He said there were no other treatment options. I questioned him at length on this, because through my own research I believed I had other treatment options to consider. I also didn’t understand how he could be making this decision without even having the biopsy results back. He told me I should seriously consider not working any longer but enjoy the time I had remaining. I asked him if I would see my 16-year-old son graduate from high school, and his response to me was that it was unlikely.
Over the next 24 hours, I had to work really hard at not going down a deep and very dark hole. I decided I had only one option…to fire my oncologist. I reached out to a breast specialist at a major university in my state to ask for her opinion on treatment options. Once I had that opinion, I asked for a recommendation for an oncologist in my area. Fortunately there was someone she had worked closely with in the past, and I made an appointment with him.
I was pretty apprehensive as I waited for my appointment. That immediately dissipated when the first words out of the doctor’s mouth when he sat down to talk to me were, “We will have difficult discussions and have to make some challenging decisions in the years to come. The one thing I will never do is take away your hope.” He has held true to his word and then some. He has been supportive of my seeking a fourth, fifth, and sixth opinion, keeps clinical trials at the forefront of our discussions, and never leaves the room until he is certain I have had all of my questions answered.
The biopsy from the hip replacement was not the news we were hoping for. It indicated that the cancer’s hormone receptor status had flipped from estrogen positive to triple negative. However, the reliability of the bone biopsy of an area that had undergone radiation was somewhat questionable. After much discussion, we decided to continue the same ER+ treatment plan for just a bit longer. As it turned out, that was the right decision as I went another year with stable scans.
My PET scan in December 2022 indicated progression, so in February 2023 I started oral chemotherapy Xeloda as my second line of treatment. We are looking forward to my getting several years on it. Otherwise, my doctor has reassured me that he has several more on the list as of now, and that is not taking into account others that may come.
I have learned quite a lot these last few years. It is so important to gather as much knowledge from reliable sources as possible to make informed decisions, and it is wise to get a second or third opinion when exploring options. I keep in mind that a doctor who will not hear the opinions of others is a dangerous doctor, and it is necessary that I am completely comfortable with all those on my medical team. And most importantly, HOPE is my favorite four-letter word.
Thank you for sharing your story, Tammy. SBC loves you!
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