Why I Chose a Double Mastectomy
When I learned I had breast cancer, my gut immediately told me to have a double (bilateral) mastectomy which meant removing not only my right breast with cancer but also my healthy left breast for a contralateral prophylactic mastectomy. Still, there was nothing “easy” about making this choice. My mind still went through process of making a decision, weighing all the information, and thinking about the pros and the cons.
My breasts were a part of me; a defining piece of being a woman. This surgery meant an amputation. Even with reconstruction, what I have left are prosthetics. No feeling. No nipples. Just two mounds of skin, silicone, and scars. But they work for me and I have no regrets which is what I hope for all women who are faced with this challenging decision.
I see women asking all the time, "Should I have a double mastectomy?" and "Why?"
I can't answer that question for anyone else, but I can share the reasons I made my choice. Before I do that, I want to clarify this is not a promotion to have a bilateral mastectomy - a single (unilateral) mastectomy or lumpectomy are very smart and just as effective options for many treatment plans. Plus, they can be less complicated. But I know it's a gray area for some so I’m hoping my experience can shed some light on how to move forward for those who are unsure.
MY REASONS FOR CHOOSING A DOUBLE MASTECTOMY
Recommendation – Every oncologist and surgeon should provide a recommendation for surgery. This is a great starting point for making a decision. My surgical oncologist recommended I have at least a unilateral mastectomy - I had a large tumor and smaller breasts so a lumpectomy would have left me with very little tissue leftover making this breast-sparing option pointless. Since I needed to have a mastectomy on my right side that prompted me to consider options for my left breast. My surgeon told me she would support either a unilateral or bilateral mastectomy. It was my choice.
Symmetry - With knowing I would have my right breast removed and likely reconstructed, my reality was the two would never match again. Cosmetically and practically, I didn’t want that. I didn’t want to look in the mirror and see one “real” breast and one fake breast. I didn’t want to deal with fitting a bra on two different shaped and sized breasts. And if I couldn't have reconstruction, I just wanted everything to be flat. So, for symmetry, I decided whatever I was going to do to one, I would do to the other.
An additional note about symmetry: This reason may not seem as significant as the others, but it is. It’s your body. You’ll have to see it and live with it every day. No one should have to choose to remove a part of themselves, but here we are. Since our physical appearance can certainly effect our psychological well-being, if you think symmetry will help ease your transition, then it’s not vain to consider it.
Age & Risk - Even though I don't have a strong family history or a genetic mutation, I was diagnosed with cancer at the young age of 29. My surgeon explained that I had a low risk of developing cancer in my healthy breast, but that every year this would increase and this cumulative risk meant I would have a greater chance over my longer lifetime to develop cancer in my left breast. So although my contralateral prophylactic mastectomy doesn’t guarantee I’ll never develop breast cancer because they can't remove 100% of my breast tissue, it does reduce the risk by 90 to 95 percent for high-risk women (mayoclinic.org).
Follow-Up Care – Since there is very little tissue left, follow-up care after a mastectomy does not include mammograms or breast MRIs. If I had not removed my left breast, I would still need those screenings to check my existing breast. The anxiety these scans induce, especially after a cancer diagnosis, can be crippling - so much so that there's even a name for it: scanxiety. I had enough mammograms and trips through the MRI machine to know that I didn't want to experience that every 6-12 months. With my double mastectomy, I monitor my breasts and skin for changes and my oncologist performs physical exams during my follow-up appointments. With that said, since I chose reconstruction, I will have follow-up care for my implants as long as I have them and will need replacements at some point during my lifetime.
Dense Breast Tissue – My breast tissue was very dense which meant mammograms and scans are harder to read. For example, during my diagnosis, I had a second biopsy on my left non-cancerous breast because the radiologists at Mayo Clinic thought something looked suspicious. The radiologists at my local hospital didn’t interpret the scan that way, but I had the biopsy to make sure. Thankfully, it turned out to be nothing harmful – just tissue that can mimic a cancerous appearance. But as you can see, dense tissue can cause differing opinions on reading scan results which can lead to more screenings, additional biopsies, missing early cancer indicators, and higher levels of stress. None of which I wanted.
Peace of Mind - Research does not show that a double mastectomy increases survival or reduces distant recurrence. But cancer is a mind-game. So even though there’s no scientific evidence, this choice brought me a little more ”peace of mind.” I felt very betrayed by my body when I was diagnosed. I am a relatively healthy person, I take care of myself, and I still got breast cancer before I turned 30. I didn’t feel I could trust my other breast and I knew the pressure of monitoring it would be too much for me. As hard as it was to accept my reality, I knew that I didn’t want either of my breasts anymore. Game over.
Now that I’ve shared the reasons I chose a double mastectomy, I can't finish this blog without stating that this choice carries real risks such as bleeding, infection, short and long-term pain, swelling/lymphedema, hard scar tissue, shoulder pain and stiffness, numbness, anxiety or depression about changes to your appearance, complications from breast reconstruction, and the potential for multiple operations. It is also NOT a guarantee that cancer will never develop or reoccur, and the risk for distant metastasis and survival is the same for those who have already been diagnosed (www.mayoclinic.org).
Some questions you may want to ask yourself to reach your own decision include:
What does my surgeon/oncologist recommend? Am I comfortable with that option?
How large is my tumor in relation to my breast size? Will a lumpectomy leave enough tissue for a cosmetically pleasing result?
Is it important to me to save as much of my natural breast as possible?
Do I care if my breasts are symmetrical or not?
What is my lifetime risk for cancer to develop in my healthy breast? Do I have any characteristics, family history, or genetic mutation that indicates a higher risk for breast cancer?
What am I comfortable with for follow-up care? Do I prefer scans and mammograms or physical exams?
Do I have dense breast tissue? (Your oncologist should be able to tell you.)
How do I think removing my breasts will effect me mentally, emotionally, and physically? Will it increase my stress/anxiety or reduce it? Will it change how I feel sexually? Do I want to breastfeed someday if I plan to have children?
Am I prepared for the short-term and long-term potential risks of a double mastectomy?
After answering these questions, my initial gut feeling made sense: I wanted a bilateral mastectomy. To this day, I am satisfied with my decision, and I'm grateful for good outcomes and successful surgeries. But I know this is a very emotional and painful road. This surgery leaves lasting scars physically, mentally, and emotionally. As always, talk to you oncologist and surgeon about your own personal situation. There is no right or wrong choice; just what’s right for you and your whole health.