I experienced two separate breast cancer diagnoses, and the aromatase inhibitors I was prescribed drastically decreased my quality of life. Then, I found a way out.
Twice I have heard the words, “you have breast cancer.” The first time I was diagnosed, my son was not even two years old. Caught on a regular mammogram at early stage and low grade, it was the most treatable form.
I have a family history and wasn’t surprised by the news. Somehow, I always knew that I would be the one in eight women in the United States diagnosed with the disease.
My treatment was fairly easy, comparatively in the breast cancer realm. Despite experiencing mild side effects on tamoxifen, I was able to focus on raising my son and being present for my husband, four older bonus kids and two very needy dogs.
Then, my world was completely rocked four years later. I did not have a recurrence where the original 6mm tumor was. Nope, my other breast decided it was time to be the host for a new primary occurrence.
This diagnosis was stage 1 and slightly more aggressive, it was again the “good breast cancer,” being ER- and PR-positive and HER2-negative.
The first time I heard my pathology labeled, it was a jumble of letters and meant nothing to me. Now more than 10 years later, I know the ins and outs of breast cancer.
After the second diagnosis, I didn’t mess around and opted for a bilateral mastectomy with reconstruction, along with nipple and decorative tattooing. I also had my ovaries, uterus, fallopian tubes and cervix removed. Bye, bye to all the parts which society believes makes me a woman. Except my hair, I kept that since I was lucky enough to skip chemotherapy. Another win!
Since my cancers love the estrogen in my body, I was directed to take aromatase inhibitors for 10 years. I made it through four years of tamoxifen before, so I hoped these would be a breeze. Female bodies crave estrogen, but for me, it tried to kill me twice by feeding my cancer, so I was onboard for the meds.
Until I started taking them.
The aromatase inhibitors were no joke. Within two weeks, I experienced so many side effects — joint pain, weight gain, insomnia, loss of libido, hot flashes and so on. I spoke to my oncologist about how everything hurt and how emotionally drained I was, so I tried different aromatase inhibitors to see if I would tolerate them better, but sadly that was not the case.
As the years went on, I would occasionally take a month off the drugs for my sanity, but because I was well short of the recommended 10-year mark, I stayed on the meds and dealt with the side effects. My quality of life was poor to say the least, which led to depression, anxiety and general snarkiness.
As I hit the five-year mark of being on the aromatase inhibitors, I cannot express how bad I felt. Getting up the stairs in my two-story home was a challenge; I was literally pulling myself up by the banister because everything hurt so badly. I would have hot flashes, which would fog up my glasses, and have beads of sweat running down my entire body. My dogs forgot what a nice walk was like, and my Peloton sat gathering dust.
Then I saw an Instagram ad for the Breast Cancer Index test. Backed by studies and endorsed in multiple oncology guidelines, my research told me the test could provide insight on how likely I was to benefit from anti-estrogen therapy for another five years. I met with the physician assistant at my oncologist and was literally such a hot mess that I could not get a sentence out without a river of tears. I was desperate for my life back. Thankfully, she listened to what I was experiencing and ordered the test since I met the criteria.
When I received my results, it was as if I had won the lottery. I wasn’t likely to benefit from continuing the aromatase inhibitors. I consulted with my oncologist who said that with the poor quality of life plus my results, I could stop taking the meds. Hallelujah.
I have now been off aromatase inhibitors for four months and feel like a whole new woman! I can exercise and walk my dogs again. I don’t make funny noises due to pain when I move. My family and I started kayaking this summer, and I love it! I am back on the Peloton leaderboard! Sleep is no longer a problem, and my hot flashes are down to a minimum. Everyone around me can tell how much better I feel by the smile on my face instead of the grimace of the past.
I now spend my time working at a nonprofit that supports women with breast cancer and host a weekly podcast. I’m so grateful for the Breast Cancer Index test. It has truly given me my life back, and I can’t wait to spread the word to every woman who could benefit from it.
This post was written and submitted by Michelle Beck. The article reflects the views of Michelle Beck and not of CURE®. This is also not supposed to be intended as medical advice.
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