[2021-06-02] 2b or not 2b

I had an excellent call this afternoon with Dr. Erin Cordeiro, Breast Surgical Oncologist at The Ottawa Hospital. She was clear, respectful and kind as she answered all my questions and provided the detailed information I will need to make a final decision on one of two options: (1) continuation of annual mammograms and breast MRIs through Ontario's High-Risk Breast Screening Program, or (2) preventive bilateral mastectomy.

As a reminder, because I am a carrier of the BRCA2 gene change, I have a 50-85% chance of developing breast cancer over my lifetime. I consulted Dr. Cordeiro because I wanted to understand the options available to me, along with their pros and cons.

Option 1 (continued breast screening) is a viable choice. Dr. Cordeiro noted that my breast tissue is not dense (for those of you who know about such things, my breast tissue is scattered), which means that mammograms are fairly sensitive, detecting cancer in 80-85% of cases. Similarly, my breast MRI found that I do not have very much background enhancement, which also facilitates the detection of tumours. "The combination of mammogram and MRI every year has an overall sensitivity of 90-93% for detecting breast cancer," said Dr. Cordeiro. This means that if I were to develop a tumour, the likelihood that a mammogram and/or MRI would detect it is very high.

I asked Dr. Cordeiro about a worst-case scenario, that is, I develop a tumour just after my April 2021 mammogram and MRI, which were both negative. She pointed out that given the frequency of screening and the fact that the amount of growth of a tumour in a year should be quite low, if a tumour were detected via mammogram and/or MRI in April 2022, any breast cancer would likely be at stage 1 or 2 at the time of diagnosis. She estimated my chances of developing breast cancer in the next year at 3-4% (recall that the 50-85% chance of my developing breast cancer is a lifetime risk).

I then asked Dr. Cordeiro whether people with a BRCA2 gene change have faster-growing cancers. She replied: "We know that BRCA patients are more likely to have a type of breast cancer called a triple negative...and those types of tumours do tend to be more aggressive and fast growing." That's part of the reason why people like me undergo breast screening every year as opposed to people my age who don't have a BRCA gene change, who are screened every two years.

Notwithstanding the tendency of BRCA2 gene mutation carriers to have faster-growing cancers, there is no difference in survival rate between those who choose Option 1 (annual screening) and those who choose Option 2 (preventive surgery). Dr. Cordeiro explained: "We've done studies looking at patients with BRCA mutations who choose to have the surgery vs. those who choose to stay in the high-risk screening program, and there's no difference in survival, so people live just as long. The reason for that is because we do detect cancers at an early stage with the screening. We detect them at such an early stage that they're not generally a threat to the person's life."

Choosing Option 1 does not preclude my choosing Option 2 in the future. Should I develop breast cancer, I could have a bilateral mastectomy then, along with reconstruction, unless the tumour were very large, which would not likely be the case with annual screening.

One might think—as I did for a few moments during the call with Dr. Cordeiro—that Option 1 is the least invasive and doesn't close any doors. However, if I were to choose Option 1 and cancer were detected, I would then have to undergo a mastectomy and, depending on the size of the tumour and whether there were cancer cells in the lymph nodes, I might also have to undergo chemotherapy and radiation therapy. Dr. Cordeiro pointed out that people with triple negative breast cancer are more likely to be recommended to undergo chemotherapy.

The advantage of Option 2 is that I would be more likely to avoid breast cancer altogether and the associated treatment (chemotherapy and possibly radiation therapy). Preventive surgery would reduce my risk of developing breast cancer by 95%. Because I would have so little remaining breast tissue after a bilateral mastectomy, my lifetime risk for breast cancer would go from 50-85% down to 3-8%, lower than the lifetime risk for Canadian women in general, which is about 12%.

I came to understand that Option 2 (preventive surgery) is not about increasing my chances of survival. It's about avoiding another cancer.

Dr. Cordeiro stated: "I definitely hear a lot of people tell me that they want to do the surgery because they don't want to have to go home and tell their kids that they have cancer. They don't want their families to have to see them go through cancer treatments. They don't want to have to go through chemotherapy.... And you wouldn't want to be diagnosed with breast cancer and think to yourself, 'Why didn't I do that?'"

This is compelling for me, having already gone through cancer and chemotherapy once. I asked Dr. Cordeiro about the cumulative effects of chemotherapy treatment. She replied: "I know that, from breast cancer patients who have had recurrences, anytime they have to give people chemotherapy again, it's not great for their system. Having side effects such as neuropathy can definitely be additive. You can also have additional side effects with the heart, so I think anytime you can try to avoid chemotherapy, it is a good thing."

At this point in the conversation, I was back to my going-in assumption, which was that surgery made the most sense for me.

We also spent time discussing the various choices with Option 2: (a) no reconstruction, (b) reconstruction with implants, (c) reconstruction with my own tissue. The advantage of reconstruction, said Dr. Cordeiro, is that "you go to sleep with breasts and you wake up with breasts, so, psychologically, it's nice." Options 2a and 2b are less complex surgeries, taking about 3-4 hours and being done as day surgery. Option 2c is more complex as it involves taking tissue from elsewhere on the body to replace the breast tissue. This surgery takes about 8 hours and is followed by a hospital stay of about 3 days. Recovery times also differ: for Options 2a and 2b, it's 3-4 weeks; for Option 2c, it's 6-8 weeks. Some people choose Option 2c because they prefer to use their own tissue than to have implants; they also would not normally need another operation in the future. People who choose implants, by contrast, may need to have them replaced in 10-15 years, though the implants themselves have no expiry date.

In both reconstruction options, the skin over the breasts and nipples would be preserved, though they would be numb and lose sensitivity. Dr. Cordeiro also pointed out that breasts with implants look different from natural breasts: they are "typically higher and perkier than most 54-year-old breasts," she said, which made me laugh. The incision in nipple-sparing surgery is at the bottom of the breast, so there should be very little visibility of scarring. Dr. Cordeiro would remove the breast tissue and a plastic surgeon would subsequently reconstruct the breasts—all during the same surgery.

The next step is for me to meet with the plastic surgeon who handles reconstruction following a preventive mastectomy.

I was so reassured by the call with Dr. Cordeiro. Though I haven't made a decision, I came away knowing so much more about my options as well as their advantages and disadvantages. I'm grateful to Dr. Cordeiro as well as to my Ottawa Regional Cancer Foundation coach, with whom I discussed my questions in advance of today's call—questions that Dr. Cordeiro called "excellent."