When I was recovering from my preventive double mastectomy, I was prepared for a lot. I had packed dozens of items that I expected I would need. I rented an Airbnb near my operations center to make sure I was comfortable while I recovered.
But I was unprepared for a handful of intrusive questions and comments from my family and friends with good intentions.
It felt especially difficult to react while I was in the initial stages of recovery. After taking some time to respond (a limit I learned to set), I found that loved ones were struggling to understand what I was going through and not sure how to show their support .
My hope is to share some of the things that have been challenging for me to navigate after surgery and provide some background on why certain comments can trigger and potentially hurtful, even when spoken with the best of intentions.
Most of all, I hope this advice can help move the conversation towards a conversation that will help your loved one feel seen and supported during a mastectomy.
When someone you know is preparing for or recovering from this surgery, here are a few things I would recommend you not to say – and a few helpful things to say instead.
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1. I had a breast augmentation – I can definitely empathize
This comment may have good intentions (the person is trying to build a relationship), but in my experience it is best not to compare breast augmentation surgery to a mastectomy. They are completely different operations with very different cures.
Breast augmentation is a cosmetic procedure that involves placing an implant in the breast. A mastectomy is a more complicated and invasive procedure that involves removing all of the breast tissue from the breast to treat breast cancer or to reduce a person’s risk.
After a mastectomy, there are several reconstruction options to choose from: implant-based reconstruction (which can sometimes be performed immediately or in a follow-up operation after breast expansion) or fat and tissue transfers from different parts of the body.
Try instead: How are you doing with the operation and (or) reconstruction?
2. Congratulations on your new breasts! How big did you get
For all of the above reasons, it is best to avoid terminology that discusses mastectomy or breast reconstruction surgery as a cosmetic procedure. For me personally, I mourned the loss of part of my body and the aftermath of major surgery (um: hormones, nerve pain, constant tenderness, chest tightness, night sweats, and weight gain), all of which made me feel uncomfortable in my body . A mastectomy is something nobody wants to do, and calling it “getting new breasts” greatly minimizes the amount of emotional and physical recovery required.
Try instead: What was it like to adapt to your body after the operation?
3. Do you care about breastfeeding?
This question, while perhaps well-intentioned, can be a trigger for someone who has had a mastectomy or a diagnosis of cancer, or someone who is considered to be at high risk for breast cancer. Since a mastectomy removes all of the breast tissue, including the milk ducts, it is not possible to breastfeed afterwards.
As someone who, based on my family history, was considered a high risk patient for breast cancer for most of my life, breastfeeding has always been a complicated topic. My mother’s breast cancer was misdiagnosed three times because she was breastfeeding my younger brother at the time. She died shortly after her final diagnosis, and I know that what she regretted most was not being able to see her children grow up.
In my decision to have a mastectomy, I accepted that I had chosen to do everything I can to be there for my family in the future. While I am grateful for the opportunity to act preventively, it is still a loss of something that can provoke a touch of sadness. And why do we all care so much about other people’s choices or the ability to breastfeed or not? Fed is always best!
Try instead: What would you like to talk about? What do you not want to talk about?
4. Was an operation necessary? Ain’t you too young
No matter how old or young someone is, deciding to have a mastectomy is the decision that is best for them – often after careful research and weighing all options.
Try instead: That was, of course, a big decision that you had to make. Are you comfortable sharing more about it?
5. Can I see your chest?
No no no.
If there was no context for you to see someone’s chest before surgery, don’t assume that asking to see someone’s chest after surgery is okay. There are many mental and emotional barriers to your body accepting after surgery, and questions like these can make it much more difficult to do so regardless of other people’s opinions.
Try instead: How do you feel about how things are healing or do you prefer not to talk about it?
6. Are you worried about breast implant disease?
Although breast implant disease is a very serious problem, this question can seem a bit insensitive, especially if someone has already had an implant-based reconstruction surgery. This is likely something the person has considered when considering their surgical options or has been briefed about by their surgeon.
If you are really concerned that this may not have been addressed, then you can try rephrase it and come from a place where you want to learn more about how the person made their decision.
Try instead: I would love to assist you in any way you need, just struggling to ask the right questions. What would be helpful?
7. Doesn’t it feel good never to have to wear a bra again?
This question is asked frequently, but it is entirely dependent on the type of reconstruction (if the person has decided on a reconstruction at all – some not). For example, I had a direct muscle reconstruction and was instructed to always wear a supportive sports bra to prevent the implant from tipping over. Yes, even in sleep!
Try instead: I know your mastectomy was a while ago, but I didn’t know what to say then. Do you want to talk about it?
8. Aren’t you happy never having to think about cancer again?
No matter what the reason someone had a mastectomy, they will likely still be thinking about cancer and its risk of cancer. Yes, a mastectomy can significantly reduce the risk of a breast cancer diagnosis or recurrence, but there is no guarantee. Also, someone who carries a gene that puts them at higher risk may have an increased risk of other cancers.
This is a truth that is most important to anyone with cancer and that I can certainly vouch for. Assuming someone is “clear” or “on the other side” can minimize feelings about the trauma of a diagnosis or the need to make risky decisions.
I am very grateful that I was able to significantly reduce my breast cancer risk with preventive surgery, but there are still breast, ovarian and colon cancer screenings that I need to do regularly because of my gene mutation and my family history.
It’s always important to say something, not nothing. When in doubt how to ask something about someone you love – just tell them! Personally, I loved it when someone came from a place to learn more.
Try instead: How can I support you now?
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