Like you, I’ve known people who’ve gotten breast cancer, and I’ve heard many stories. Much like childbirth, no two stories are the same. And despite all the stories I had heard, I was still surprised by quite a few things along my own journey with breast cancer this year.
It started with a routine mammogram, followed by a call for additional imaging. It was a little concerning, but I happened to have my annual physical that same day, and my GP reassured me that call backs are common and not cause for alarm.
However, when I returned for the additional imaging, it became clear to me that the technician was focused on a specific area. I asked if my suspicions were correct and she said, “Yes, it appears you have a tumor.”
Whoa! I didn’t even think technicians could say something like that.
Next, the radiologist came in and said I would need a biopsy, but they were pretty certain it was cancer.
I immediately thought it was a death sentence and began to panic. My husband met me at home, and I cried as I ran through all my fears. Among the biggest fears was not being present for my daughter’s senior year and likely her last year living at home.
Surprise #1: ChatGPT can be your best friend.
While Googling medical stuff in the past always seemed to lead me to the worst case scenarios, ChatGPT was wonderfully encouraging. I know that may be controversial to some, but having a place to ask questions, understand medical terminology, and make sense of what doctors were telling me was incredibly comforting.
I encourage anyone facing a diagnosis to ask questions and learn as much as possible. Of course, AI is not a substitute for your medical team, and its information needs to be verified, but for me, it was an invaluable tool in understanding my options and preparing for appointments.
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I was told I would receive my biopsy results on a Friday before 3pm. When the call didn’t come, I decided to take my daughter to a pumpkin farm, possibly the last time we would visit one together for the next four years.
While in the corn maze, Selena Gomez blasting over the sound system, the call came in at 4:55pm.
Directionally challenged, I frantically found my way out of the maze to take the call in a quiet space. It was almost comical. Plus, I had to pretend everything was okay because I wasn’t ready to alert the kids to my situation.
The biopsy was positive. I was told to contact a surgeon and schedule surgery within the next couple of weeks.
But it was nearly 5pm on a Friday, and no one was reachable. When I finally spoke to my gynecologist and asked what I should do if I couldn’t schedule surgery within two weeks, she said something that stuck with me. She said, “This isn’t a medical emergency, but it is a mental health emergency.”
At the time, I thought that was insane. This was absolutely a medical emergency! What was she talking about? Mentally, I’d be fine if the medical emergency was addressed.
Three days later, I was rushed to the hospital in an ambulance, thinking I was having a heart attack. It turned out to be severe, stress-induced vertigo.
Surprise #2: It really is a mental health emergency.
From there the mental hits kept coming. What I did not realize about a cancer diagnosis was how slowly the information unfolds.
A week after learning my biopsy was positive, I learned tumor size and cancer type. Another week later, I learned about its grade and other characteristics. Each piece of information brought new questions, new worries, and sometimes entirely new treatment possibilities.
Surprise #3: All this early information is indicative. Your diagnosis can continue to evolve.
While the initial biopsy provides important information, additional testing and surgical pathology can reveal more details about the cancer’s size, grade, and stage. These findings can change your diagnosis, prognosis and treatment recommendations.
Surprise #4: Two surgeons can have entirely different approaches.
I got on the recommended surgeon’s schedule three weeks after my initial diagnosis. Shortly afterward, I scheduled a second opinion with another highly regarded surgeon.
One surgeon recommended lumpectomy with reconstruction all at once. The other insisted on two separate surgeries, with reconstruction six months later.
One wanted an MRI and a sentinel lymph node biopsy. The other didn’t recommend either, explaining that the MRI could produce false positives and that the lymph node biopsy was unlikely to alter my treatment plan.
These were both highly trained, highly regarded surgeons at two of the best hospitals in the country. I couldn’t believe how different their opinions could be.
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I opted for the single surgery.
At this point, we finally had a plan, and we told our kids. They seemed to handle the news remarkably well. In retrospect, I also realize they were consulting AI as well and getting some of the same reassuring information I was.
But then the MRI identified another mass. My surgery had to be delayed while I underwent an MRI-guided biopsy and waited for the results.
The Friday before Thanksgiving, while enjoying the city tree lighting ceremony with my daughter, my phone rang again.
My surgeon had quit.
Just like that. No explanation, no direction. I needed to find a new surgeon.
Suddenly the patient-surgeon relationship that had been so strongly emphasized when I was choosing a surgeon went right out the window.
And again, who was I going to reach the Friday evening before Thanksgiving break?
I scrambled over the break to find a new surgeon, prioritizing someone who wouldn’t push my surgical date back any further.
The MRI-guided biopsy ultimately came back negative, however my new surgeon recommended removing that area during the planned surgery as well.
Then, on Christmas Eve, while enjoying the Christkindlmarket with my daughter, my phone rang yet again. With a brass band playing “Deck the Halls” in the background, a nurse asked if I would be okay rescheduling my surgery yet again.
Apparently, there was a scheduling conflict involving one of the surgeons on my team.
I was pretty adamant that I was NOT okay with that.
They were proposing another three-week delay, but we ultimately agreed to push it back only one day. Though I had a sneaking suspicion that I was just being placated for the time being and that someone would just call out sick if the conflict didn’t resolve itself.
I enjoyed the holidays immensely. We even fit in a ski trip to Colorado.
When I returned I had two Savi Scout markers placed to identify the surgical areas. Apparently doctors can’t actually distinguish breast cancer from healthy tissue with the naked eye. They also had to remove one originally placed during the first biopsy because it was malfunctioning.
Twas the night before surgery, when all through the house, not a creature was stirring except for my cell phone with a final call to tell me my plastic surgeon was “deathly ill” and would not be able to perform my operation. My choice was to move forward with his substitute or reschedule. It didn’t feel like much of a choice at all.
The next morning I arrived at the hospital. I was all prepped for surgery when tho and behold my plastic surgeon appeared at my bedside having had a miraculous recovery. At that point, I was really questioning if I still wanted them to operate. I had to surrender. Battling cancer is part recognizing what you do and do not have control of.
The surgery went well, and I seemed to be healing nicely. Based on the initial indicators, everyone had been confident I would not need chemotherapy. In fact, my radiation sessions had already been scheduled.
Surprise #5: Cancer is a two-steps-forward, one-step-back process.
My surgical pathology revealed that the cancer was more aggressive than originally indicated.
Suddenly, my oncologist recommended chemotherapy before radiation, four infusions over three months.
I was devastated.
My menopausal status was borderline and I learned that for women over 50 with certain hormone receptor-positive, HER2-negative breast cancers and an Oncotype score (likelihood of recurrence) like mine, the benefits of chemotherapy can depend on menopausal status and other factors.
Thanks to the encouragement of ChatGPT, I pushed for additional testing and simultaneously scheduled a second opinion.
My AMH came back undetectable, supporting the conclusion I was postmenopausal, and my oncologist thus agreed I could avoid chemotherapy.
I kept the appointment for a second opinion anyway.
And again, I learned how different medical opinions can be. The second oncologist said she wouldn’t have recommended chemotherapy based on my age (alongside my other clinical factors.) Menopausal status would not have been a consideration. She also had a different opinion on what aromatase inhibitor I would take after radiation and for how long.
I really liked this oncologist and had pretty much decided to switch to her when I received an email that my original oncologist was resigning to move to the West Coast. Had I stuck with my original oncologist, and not pushed for the AMH test, I’d have already been undergoing chemotherapy treatment when she’d have left.
Surprise #6: There can be quite a bit of turnover in the medical field.
During treatment, I unexpectedly lost both my surgeon and oncologist. Continuity of care matters, however, there is also value in fresh eyes on your case. If you spend time researching doctors, building relationships, and learning to trust their recommendations, it can be a huge blow to have to start over, but it isn’t the end of the world. March on! Some hospitals/cancer centers have what they call Breast Navigators who help guide patients through the breast cancer care process. They can help schedule appointments and identify the specialists and support services for patients. My hospital did not have Breast Navigators, but knowing what I know now, and what I went through, I recommend looking into this service to anyone who might be starting their journey.
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Radiation was thankfully uneventful. It felt and looked like a sunburn, with some fatigue. When I rang the bell at the end of my treatments, I thought the hardest part was behind me.
Surprise #7: Treatment side effects can appear long after treatment ends.
Four months after radiation, I developed lymphedema in my chest wall. Lymphedema is incurable but manageable. It occurs when the lymphatic system cannot adequately drain fluid causing excessive swelling and discomfort. Surgery and radiation can both contribute to this condition.
Months of physical therapy didn’t help and the swelling increased.
Around the same time, I began endocrine therapy, which can accelerate bone loss. A few months later, I was diagnosed with osteoporosis. To counter the effects and hopefully reverse the osteoporosis, I needed either a semi-annual infusion of bisphosphonates or a weekly pill, each with their own set of side effects. However, before I could start either I needed dental clearance because of the rare risk of osteonecrosis of the jaw.
My dentist required me to have all my wisdom teeth pulled first. The bisphosphonates can’t begin until eight weeks after the oral surgery, so I am still waiting on that.
Meanwhile, the swelling continued. A pain clinic recommended targeted needling and more physical therapy, but this time I insisted on seeing someone who specialized in chest wall lymphedema after breast cancer treatment. It was nearly impossible to find anyone in the city of Chicago with this specialty.
Surprise #8: Doctors can be experts in one area and know surprisingly little about another.
Even RUSH couldn’t refer me to an appropriate specialist. I did my own research via ChatGPT and found someone at Northwestern and though I got in for an evaluation, I can’t get in with her for months to begin weekly lymphatic drainage massage. During the evaluation however, I was given a referral order for compression bra sizing. There are basically only a couple of places in the city where you can have this done, and it was also difficult to find an opening.
Surprise #9: Not all compression bras are the same.
It is important to be sized by a specialist and get the appropriate amount of compression, and to continue to measure and adjust as swelling decreases.
Next step was the targeted needling. Targeted needling is the injection of lidocaine into the chest muscles. I had nine areas of muscle they wanted to target and five injections were made into each one.
Surprise #10: Targeted needling is painful. Period.
I didn’t bring anyone with me to the targeted needling appointment, but probably should have. It took a lot out of me, and driving home with an ice pack on my breast wasn’t ideal. The jury is still out on whether it has been helpful, but I am optimistic.
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I consider myself very lucky. My journey has been relatively easy compared with what many others endure. However, even under the best of circumstances, breast cancer can take a toll and have lifelong ramifications.
I own my own business, which gives me the flexibility for appointments and therapy. But I don’t have short-term disability benefits to offset lost income, and I can’t imagine managing all of this while working a full-time job with little flexibility.
The journey has further proven what I’ve always known to be true, which is that you MUST ADVOCATE FOR YOURSELF every step of the way.
I am disease-free and that is the most important thing, but in honor of Breast Cancer Awareness Month, I hope sharing my experience makes someone else’s journey a little less surprising at least.
