Making choices at the crossroads of breast cancer treatment

In October 2021, I was diagnosed with stage I, estrogen-receptor positive, HER2-negative invasive breast cancer in the left breast. I was 60 years old. As anyone reading this may have experienced, cancer was a shock, followed by a struggle. For me, the biggest psychological struggles occurred when there were choices to be made. As I sought guidance on making these choices, one of the things I heard a lot was “it’s very individual.”  And I found that to be true. My choices might not be the same as yours, and that’s OK. I am also aware that many women don’t have the choices I had, that having a choice at all could be a matter of luck or privilege. Still, I struggled with choice, especially early on. What I want to talk about is the process of making a choice, and some of the lessons I learned along the way.

Lumpectomy vs. mastectomy

I had to choose between lumpectomy and mastectomy during my first appointment with my breast surgeon. It was a difficult meeting. I was recently diagnosed, still in shock, knew very little about breast cancer, and was an emotional mess as the surgeon presented information and options -- and seemed to expect an immediate decision in order to get me onto her extremely booked surgery calendar. I asked her for additional context for making the decision: she explained that, for my type of breast cancer, recurrence rates were about the same between a mastectomy versus a lumpectomy with radiation, though if I were to do a mastectomy, I “might not” have to do radiation. I did not know anything about radiation, so that did not help much. I asked her what she would do. She said that since results were similar, she would probably choose the less radical course: a lumpectomy.  I asked, “What would that look like?” She thought it would look “fine.” I was not at all clear that her “fine” would be “fine” for me. Based on my family history, she doubted I had genetic predisposition for breast cancer and did not think genetic testing was necessary, but there was enough cancer of various types in my family that I was worried.

Despite feeling pressure to leave the office with a decision and a surgery date, I instead left the office with the scheduler’s card and a promise that I would call her back within a few days. It was extremely hard to resist the panic about losing my place in line, but I was not ready, either emotionally or in terms of knowledge, to make a decision.

I spent the next couple of days researching information online and spoke several times to a particularly knowledgeable friend. I concluded if I had the BRCA genetic markers, I would go for a double mastectomy. With the urging of my friend, I signed up for genetic testing. But, because the genetic testing takes time, I still worried about losing a spot with the surgeon. My friend had two additional pieces of advice that were extremely helpful: first, “less is more,” as the complications from lumpectomy surgery are far lower than with mastectomy and reconstruction; second, “you don’t know enough yet,” meaning I would know more about the tumor and my prospects after it was taken out, and if I subsequently decided that a mastectomy was warranted, then I could do that later on. I scheduled surgery for a lumpectomy, knowing that I would shift course if the genetic testing warranted. Fortunately, that came back clear.

Lesson #1: Do not be pressured into a decision you are not ready to make.

Chemotherapy: To do, or not to do

While the clinical pathology that came back from my surgery was encouraging, the results of my long-awaited Oncotype DX test placed me at the low end of a high-risk group – just over the line for which chemotherapy is usually recommended (cut off is 25, my score was 27). The oncologist gave me a choice. I could do chemo for the relatively small benefit it would theoretically offer against the risk for recurrence, or I could pass on chemo. Again, I was torn. I absolutely dreaded the idea of chemo. My oncologist suggested that any long-term side effects were minimal, but I was less sanguine. I was not happy about the hair loss, but I was also concerned about losing sensation in my hands and feet (neuropathy), despite the risk of permanent loss being low for the drug regimen suggested. Neuropathy can contribute to falls and other safety hazards as one ages and could make walking and hiking --  two things I love to do -- much harder. On the other hand, if I were to have a recurrence of cancer, and I had not done everything possible to prevent it, I knew it would be hard to forgive myself.

Again, my friend came to the rescue by suggesting I get a second opinion. I met with an oncologist specializing in breast cancer who works in a different hospital system. He was clear that, if it were him, he would do the chemo or, at least, try it. If it were too much, I could dial back the dosage or stop. He confirmed that the long-term risks of neuropathy were low but also shared that he was overseeing a study on the effects of cooling hands and feet during chemo to lower neuropathy risks, and that he was getting positive results from the cooling. I decided to go ahead with the chemo under the supervision of the original oncologist as I wanted to remain in the same system as my surgeon and radiation oncologist but also decided to do everything I could to minimize side effects. I signed up for cold capping to lower hair loss, which was expensive but coordinated by the hospital, and I purchased and used cooling mittens and socks during infusions, which was allowed, but not supported or coordinated by hospital. I also took B6 and L-glutamine after I cleared these supplements with the oncologist. I would not have known about several of these measures without meeting with the second doctor, and then doing some additional research myself.

Lesson #2: A second opinion may have benefits beyond your expectations.

Tamoxifen vs. Aromatase Inhibitor

Because my cancer was hormone-receptor positive, the last part of standard treatment is the use of an estrogen suppressor. Usually, tamoxifen is recommended for premenopausal women, while aromatase inhibitors are recommended for post-menopausal women. My situation was muddy, as I was not officially menopausal when I began cancer treatment. While I had not had a period in 9 months, I had not gone the full year that defines menopause. My oncologist initially suggested tamoxifen. Before the start of chemo, I asked if we could run a blood test on hormone levels to confirm my status. We did, and the results confirmed that I was in menopause. Those results would argue for the use of an aromatase inhibitor. A concerning side effect of aromatase inhibitors, however, is bone-thinning. Because of this, I also asked my oncologist about ordering a DEXA scan to measure my bone density before we made a final decision (usually DEXA scans are done for women over 65, so I had not had one). He did and, based on the mild bone loss for my age, we agreed that I would start on an aromatase inhibitor. At this point in my cancer journey, I felt empowered enough to pressure test a choice and to request additional information to be sure that the choice was appropriate for me.

Lesson #3: Make sure decisions are tailored to your specific situation as much as possible. If you need more information, ask for it. 

Moving forward

I finished my “active treatment” for cancer a few weeks ago and am still adjusting to the aromatase inhibitor (Arimidex or anastrozole) prescribed by my oncologist. As I think about the future, I am acutely aware of uncertainty: of cancer, naturally; also, of life more generally. But I am at peace with the decisions I made during my cancer treatment thus far, in part because I was an active participant in my own care.