Powered By
Continue with Facebook
Continue with Email
A bilateral prophylactic mastectomy can lower the risk of breast cancer for people at high risk by up to 95 percent. To many, that’s a major benefit that can easily justify potential drawbacks, such as surgical risks and changes in body image.
If you’re considering a double mastectomy as a preventive measure or for early-stage breast cancer, it’s natural to wonder whether you’ll have regrets afterward. In this article, we’ll discuss the regret rates. We’ll also share what members of MyBCTeam say about their experiences with prophylactic mastectomy.
The choice to get a bilateral prophylactic mastectomy, also called a preventive bilateral mastectomy or double mastectomy, is a personal one. You and your doctor should discuss the risks and benefits. That way, you can make an informed decision about your breast health.
The encouraging news? Most people who get a preventive double mastectomy don’t regret their decision. But not everyone who gets one will feel the same way.
In one study, 6 percent of participants who had a prophylactic mastectomy said they regretted it when asked an average of five years later. Regret was slightly more common among participants who started the discussion with their doctors than among those whose doctors brought it up first. A family history of breast cancer didn’t influence mastectomy satisfaction or regret, the researchers said.
Research suggests that most people who get a double mastectomy for early-stage breast cancer or to prevent breast cancer feel satisfied with their decisions. In one study, 84 percent of participants were happy with their outcomes and the choices they made.
Some people choose to get breast reconstruction after a double mastectomy to restore breast shape and appearance. Satisfaction is about the same between those who had a breast reconstruction and those who opted not to.
Some MyBCTeam members have shared the downsides of these procedures. Some had a bilateral prophylactic mastectomy. Others got a contralateral prophylactic mastectomy (surgical removal of the cancer-free breast after being diagnosed with cancer in the other breast).
One common reason why some people feel regret or have mixed feelings is the impact this surgery can have on their self-esteem. In a study published in the Journal of Clinical Oncology that followed women for one year after their surgery, 48 percent said they felt self-conscious.
Some MyBCTeam members have felt similarly. “First day back at the office today after my prophylactic bilateral mastectomy,” said a MyBCTeam member. “I’m just feeling self-conscious about my appearance and what people are thinking.”
Another member responded, “I felt self-conscious when I went back to work after my mastectomy. The self-consciousness became less with time.”
In a study on the results of contralateral prophylactic mastectomy, the impact on intimacy was among the most frequently reported adverse effects.
In another study, about 22 percent of participants who got a contralateral prophylactic mastectomy reported a lower sense of sexuality after their mastectomy.
A total mastectomy can affect how you feel about your body and may also cause loss of feeling in the nipple area. For some people, this may affect overall sexual satisfaction.
One MyBCTeam member asked, “Has anyone else experienced social anxiety after a bilateral mastectomy? I don’t regret staying flat. I’m fine with my close friends.”
Another member said, “At home, I go without my prosthetic. But professionally, I feel my clothes look better and I feel better with it. It takes time to rebuild confidence and acceptance.”
A study published in the Annals of Surgical Oncology that evaluated women who had a contralateral prophylactic mastectomy found that poor cosmetic results were the top concern among those who regretted their surgery.
Some shared concerns about the results of the breast removal. Others were dissatisfied with the results of the subsequent breast reconstruction.
Scars are also a concern for some people. One study found that 44 percent of surveyed participants were unhappy with scars one year after getting a bilateral prophylactic mastectomy.
One MyBCTeam member shared, “It took me five months before I could actually look at my scars.”
Several MyBCTeam members have discussed the adverse effects of a double mastectomy, including nerve damage. “Lots of skeletal pain and worsened nerve damage due to bilateral mastectomy. Intensified major issues,” shared a member.
Another member asked if it’s normal to have numbness or tingling in the chest area after a double mastectomy. A second member responded, “Mine was and is numb after two and a half years. I have only skin pulled over my rib cage. It stings on the back sides of my scars.”
Several MyBCTeam members have shared specifics about the positive impacts of their surgeries. Some received a bilateral prophylactic mastectomy to prevent breast cancer from occurring or returning. Others opted for a double mastectomy to treat early-stage cancer.
Many members felt overall confidence in their decision to get a bilateral mastectomy. As one member put it, “I only had cancer in the left breast and chose bilateral mastectomy. I am young and wanted to be proactive. I have NEVER regretted my decision!”
Reduced Cancer Risk and FearReduced cancer risk and reduced fear of cancer recurrence are perhaps the biggest benefits of a prophylactic double mastectomy. “I didn’t want to always look back and wonder when cancer would attack my left breast. I wanted to win and not let cancer invade again,” said a MyBCTeam member.
Another MyBCTeam member shared similar sentiments. “In my mind, the only suitable option for me was a double mastectomy to increase my overall survival odds and decrease my chances of the cancer returning,” they said.
Avoiding Cancer Treatment Side EffectsSome MyBCTeam members have discussed how a bilateral mastectomy allowed them to avoid certain breast cancer treatment side effects. “I already have three conditions that cause fatigue. I can’t do any more fatigue,” shared a member.
Another member mentioned not wanting to go through hair loss from chemotherapy again. “I also only had cancer in one breast, but opted to have both removed,” they shared. “I didn’t want to go through losing my long hair a second time … yes, I know it’s vain … but also wanted to cut my chances of recurrence as I was triple-negative stage 3.”
No More Future Breast SurgeriesSome people may opt for this procedure because they likely won’t have to get breast surgery again in the future.
One MyBCTeam member talked about the decision to get a bilateral mastectomy without reconstruction. They said, “I chose to go flat after removing both breasts. I am very happy about this. It’s liberating, easy, and no more surgeries. I am extremely happy with this decision.”
The decision to have a bilateral prophylactic mastectomy can be difficult. Keep talking with your healthcare provider about your concerns, goals, and preferences, including whether you’re considering reconstruction.
It’s also helpful to ask questions about what to expect from a double mastectomy and the recovery time after a mastectomy. Your oncology team can help you weigh the benefits and risks of a preventive mastectomy based on your health, goals, and overall well-being.
On MyBCTeam, people share their experiences with breast cancer, get advice, and find support from others who understand.
What advice would you give someone who was considering a double mastectomy? Let others know in the comments below.
Get updates directly to your inbox.
Continue with Facebook
Continue with Email
Continue with Facebook
Continue with Email
Become a member to get even more
Join
Your Privacy Choices
This is a member-feature!
Sign up for free to view article comments.
We'd love to hear from you! Please share your name and email to post and read comments.
You'll also get the latest articles directly to your inbox.