8 Things Not to Say to Someone After a Mastectomy
Eight months ago, I found out that I carry a BRCA gene mutation, which means that my chance of developing breast cancer in my lifetime is really high—I’m talking as high as a 56 percent risk. We all carry BRCA genes; the function of the BRCA1 and BRCA2 genes is to help act as tumor suppressors. Because my BRCA2 gene is mutated, it leaves me much more susceptible to breast and ovarian cancer than the general population.
I originally never intended to find this information out. I took a 23 and Me test to find out my ancestry DNA and added on the health report option to my package, mostly just out of curiosity. At the time, the health report option didn’t offer BRCA testing. But down the line, I received an email from 23 and Me announcing they received FDA clearance for a direct-to-consumer genetic test for cancer risk, including three BRCA genetic mutations—and customers could choose for themselves if and when they wanted to receive the report.
I didn’t really know much about what it meant to test positive for a BRCA mutation, nor did I have a clear understanding of how it can affect someone's life—but I knew the mutations they could test for were most common in people of Ashkenazi Jewish descent, which I am. The company also provided a bunch of info to read before making the decision to continue with the BRCA testing. And after researching much more on my own, I opted in.
After my results came in, I immediately followed up with a genetic counselor, who confirmed my results with a blood test, helped me understand my risks, and put everything into perspective. At a time like that, I surely needed perspective. Working with a genetic counselor is highly recommended to help put your results into context, as SELF reported previously. But I want to stress that using an at-home genetic testing kit to determine your BRCA status has both pros and cons and is a very individual decision to make. You can learn much more about who genetic testing for BRCA-related cancer risk is right for and how to go about it responsibly here.
After many tears and talks with my family and friends, I knew I wanted to do whatever I could to decrease my risk of developing breast cancer. For me, that meant undergoing a preventative double mastectomy.
Now, two months post-op, I am sharing my story to help others better understand what it means to undergo a mastectomy—and what it doesn’t mean.
At 31 years old, I never thought I’d consider myself an “expert” on what it’s like to go through this procedure. But when life handed me highly susceptible lemons, I tried to make the best damn lemonade I could, and for me that has meant trying to spread knowledge, and even help people who might know someone like me and who want to be as supportive as they can.
One thing I’ve learned is that when asking about my surgery, people often approach me with a lot of misinformation about and insensitivity towards my experience, whether they mean to come off that way or not.
Of course, when someone you know is going through or has gone through a mastectomy, it’s hard to know the right things to say. This is definitely a sensitive subject, so you’ll want to make sure to tread lightly when talking with a breast cancer survivor or previvor (which is the term we use for someone who has a predisposition to cancer but hasn’t actually had the disease) and avoid language that may be offensive to the person or perpetuate myths about mastectomies and/or breast cancer.
Here are the remarks I definitely didn’t want to hear (yes, people really said these things to me), as well as a few suggested methods of offering support that I found to be more helpful instead.
1. Don’t say: “You’re too young to have a mastectomy.”
When I decided to get a preventative double mastectomy at 31, I often heard comments about how I was “too young” to be having this procedure. It’s important to remember that cancer doesn’t discriminate against age. Furthermore, we should all be able to decide what we want to do with our own bodies, without judgment.
Not that I owe anyone an explanation, but as I mentioned, I’m also Ashkenazi Jewish and do have a family history of breast and ovarian cancer that I learned more about after my DNA test and speaking with my family. So undergoing my preventative double mastectomy as early on in my life as possible made a lot of sense for me.
A comment like this sounds to me as if you think I made some rash decision about my health, which is not the case. This is a private, personal decision that I made with support and education from the appropriate health experts.
Instead, you can say, “I can only imagine how difficult that must have been for you, and how emotional that decision must have been.”
2. Don’t say: “But you didn’t even have cancer, right?”
This comment is specifically said to previvors, like myself. If you know someone who is a previvor, avoid this question, as this comment certainly downplays their experience and sort of feels like a slap in the face.
Making the decision to undergo a preventative double mastectomy is an extremely difficult one, as I mentioned. Even though this person didn’t have a cancer diagnosis, that could have been the case in the future if they didn’t choose to take preventive steps.
Alternately, you might want to comment on how courageous and proactive she is, because that’s exactly how I felt when I took this important step in my life.
3. Don’t say: "It's like a free boob job!”
I actually heard this comment many times, and it never got easier hearing it. Having a mastectomy is not a free boob job. I repeat, not a free boob job.
With a cosmetic breast augmentation, the surgeon isn’t removing your breast tissue in an effort to reduce your risk of a potentially life-threatening condition. And with a mastectomy, that’s exactly what is happening. In general, it’s also a more complicated surgery. Sometimes, the surgeon is removing your nipples and lymph nodes as well.
I’d also argue that the emotional toll isn’t something you can even compare to that of breast augmentation surgery. I don’t say this to offend or minimize the emotions for a person who has had a breast augmentation for whatever reason, but they are just not the same thing. To add insult to injury, my mastectomy and reconstruction certainly weren’t free because I chose to see an out-of-network doctor—so that comment can just add salt to the wound.
Instead, just don’t compare these two operations at all. And, if you’ve had a breast augmentation, try to avoid saying that you “can totally relate” to the person who went through a mastectomy; this can feel as if you’re minimizing the experience of a mastectomy, even if it’s not ill-willed. Just ask how they are feeling, and if there’s anything specific you can do to be there for them in that moment.
This brings me to my next batch of no-no questions...
4. Don’t ask: “Can I see your new boobs? How big did you go?”
If your friend hasn’t offered for you to see their body post-surgery, then asking this question is pretty presumptuous. If I didn’t have a mastectomy, would you normally be asking to see my breasts or asking my bra size? The answer is probably no. This question may make the other person uncomfortable and uneasy, even if you’re really close with them.
What’s more, this question makes the assumption that the person who underwent a mastectomy also had reconstruction. But not every person chooses to reconstruct and instead are living what I like to describe as flat and fabulous. Just like asking someone how much they weigh, it’s better to skip this question.
So even if you have a tight relationship with this person and think it’s OK to be outwardly curious, it’s better to do and say nothing or just follow their lead.
5. Don’t say: “Wow, your scars are so big.”
Any negative or judgmental comment on a person’s surgery is unappreciated. Most people post-mastectomy already feel a little self-conscious about something pertaining to their reconstruction. If you point out something traditionally viewed as an imperfection, like a scar, it will very likely stay in their mind forever as something noticeable or attention-grabbing.
Instead of calling out physical marks during someone's mastectomy recovery, why not talk about how brave and beautiful she is, inside and out?
6. Don’t say: “Just be happy that you’re healthy now.”
This makes me feel like you’re minimizing my emotions. Going through a mastectomy comes with many upsetting thoughts and feelings, as you can imagine. And honestly, I still feel bad for feeling bad sometimes.
We tend to think to ourselves, I should just be happy that I’m healthy now. So when we hear the same thing from our friends or even strangers, it can be very discouraging. It’s crucial for people who have gone through this to feel any and all emotions that come their way, even when we feel bummed out or sorry for ourselves. We can be our own toughest critics, so implying that we should buck up isn’t encouraging to us.
7. Don’t say: “Do you feel like less of a woman?”
Having my breasts removed doesn’t make me feel like less of a woman at all—and you certainly don’t have to have breasts to identify as a woman. For me, my courage, bravery, and strength help define my womanhood.
Being a woman can be defined in a million ways and interpreted however a person wants. And implying that breasts are an identifying quality of a particular gender, or that they are required to fulfill a particular ideal of what a woman is supposed to be or look like, is a seriously offensive and antiquated way of thinking.
8. Don’t say: ...nothing at all.
It can be hard to know what to say to someone who’s going through this or has gone through this. But staying silent or delaying communication with a person who went through a mastectomy or is in recovery can feel lonely on the other end. If you are sincere and thoughtful, any simple, loving, kind words will be appreciated.
My best advice at the end of the day is to let the breast cancer survivor or previvor take the lead on this discussion. Being a good listener and giving us space to share our true feelings is what we are really looking for.
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