Breast Cancer Patients and Previvors Face Tough Decisions

When I had what was described as a "normal garden-variety breast cancer" caught on a routine mammogram eight years ago, the doctors only tested for a couple genetic breast cancer abnormalities. Now they test for 19! The ever-increasing list of genes to test is leading to a larger number of "previvors." Breast cancer previvors have not experienced cancer, but are in the unenviable position of trying to decide if they want a prophylactic double mastectomy or other treatments now or if they want to wait to see if they get cancer before they consider treatment options. That is a tough position.

My "normal garden-variety breast cancer" eight years ago became the PALB2 genetic abnormality discovered in additional genetic testing just this year. Eight years ago, a lumpectomy, chemotherapy, radiation and hormone therapy were my doctor-approved treatment choices. This year, to prevent a recurrence or a new breast cancer down the road, a prophylactic double mastectomy was the doctor-approved reasonable choice for me.

Face possible breast cancer treatment or consider a double mastectomy now? After going through chemotherapy, radiation, lumpectomy and an AI drug, I chose to do anything I could to prevent going through breast cancer again. Chemotherapy sometimes has challenging side effects and it can sometimes have long-term heart, blood, bone, or cancer-causing side effects years later. If I could go back in time as a previvor or to my day of first diagnosis eight years ago, I would choose to be proactive now over dealing with actual cancer later.

Surgery was the clear choice for me in my specific case — remove a removable part before it endangers the rest of me. That said, I know this is a very difficult personal choice based on many factors for each person who is faced with this decision. There is no clear-cut right or wrong here. As someone who experienced cancer treatments eight years ago and now a double mastectomy this year, I wanted to share my personal choice.

I am not saying that a prophylactic double mastectomy with or without reconstruction is an easy thing. It isn't. This process has been painful and time-consuming and I do not even have the finished reconstruction product yet. Surgery has its own risks and side effects. What I will say is that even though I woke up in major surgical pain, I woke up without the lump of fear and anxiety that has been in the middle of my chest since diagnosis and through eight long years of subsequent careful monitoring.

As for the possibility of breast cancer, I wanted this worrisome fear off my back as much as I could. Yes, there is still a chance that I will have breast cancer or a recurrence. Still, I just want to get back to my normally scheduled life, and, whatever your decisions are, I want you to be able to make good informed decisions that help you to do that too.