Choosing a double mastectomy (and no radiotherapy)
January 5, 2024 10:09 PM Subscribe
I'm heading into meeting a surgeon and making decisions next week for early detected cancer. I'm not too worried about advocating for the surgery I want, an aesthetic flat double masectomy given a family history of young breast cancer, plus the absolute hassle of surgery due to other health conditions, but the current medical research seems to heavily push a single mastectomy as the better option even with the same outcome. I'm also not keen on lumpectomy+radiotherapy now as it's a one-time tool.
A family member who did a lumpectomy says now they wish they'd had a double mastectomy and not had radiotherapy because they didn't understand that the complications of a lumpectomy are as much as a mastectomy, and that radiotherapy is a one-time option that they can't use again if they have cancer. It seems to me that there's a big focus on reconstructive surgery and preserving the breasts, even when that increases risk, as like a Very Special Woman Signifier, and that just isn't true for me.
I don't feel super-scared about cancer or mad at my breasts, just - it seems practical to have one op and be 99% done, rather than so many different treatments in order to keep wearing bras, but the medical advice presents this as a lesser choice. Please share your collective wisdom and experience!
A family member who did a lumpectomy says now they wish they'd had a double mastectomy and not had radiotherapy because they didn't understand that the complications of a lumpectomy are as much as a mastectomy, and that radiotherapy is a one-time option that they can't use again if they have cancer. It seems to me that there's a big focus on reconstructive surgery and preserving the breasts, even when that increases risk, as like a Very Special Woman Signifier, and that just isn't true for me.
I don't feel super-scared about cancer or mad at my breasts, just - it seems practical to have one op and be 99% done, rather than so many different treatments in order to keep wearing bras, but the medical advice presents this as a lesser choice. Please share your collective wisdom and experience!
Full mastectomy at this time pros --
You will never be younger.
You may never be healthier.
Your body will heal faster.
You can tolerate the discomfort and frustration better.
You have your family and friends to help you through this.
You may not have better insurance in the future.
Your finances may be worse.
You may move to a location that has a lower quality of health care for women and the elderly.
Other health issues in the future may interfere with the preferred treatment decisions if the cancer returns.
Treatment options for the current cancer diagnosis may limit what is recommended in later health care. This includes health issues other than a cancer relapse.
Living with a "watchful waiting" prognosis.
The possibility of a false negative test or undiagnosed relapse.
A worse outcome the second time around.
Full mastectomy at this time cons --
The type and location of the cancer may indicate one type of treatment over any others.
In case of a cancer relapse --
Treatment options in the future may be much better than what is available now.
You may prefer the next medical team (or not).
You may prefer the results from the second surgery over the first one (or not).
posted by TrishaU at 5:06 AM on January 6
You will never be younger.
You may never be healthier.
Your body will heal faster.
You can tolerate the discomfort and frustration better.
You have your family and friends to help you through this.
You may not have better insurance in the future.
Your finances may be worse.
You may move to a location that has a lower quality of health care for women and the elderly.
Other health issues in the future may interfere with the preferred treatment decisions if the cancer returns.
Treatment options for the current cancer diagnosis may limit what is recommended in later health care. This includes health issues other than a cancer relapse.
Living with a "watchful waiting" prognosis.
The possibility of a false negative test or undiagnosed relapse.
A worse outcome the second time around.
Full mastectomy at this time cons --
The type and location of the cancer may indicate one type of treatment over any others.
In case of a cancer relapse --
Treatment options in the future may be much better than what is available now.
You may prefer the next medical team (or not).
You may prefer the results from the second surgery over the first one (or not).
posted by TrishaU at 5:06 AM on January 6
For context, I'm trans and had a double mastectomy for gender reasons. My mom had a single mastectomy in the early 90s and opted to ditch the second breast rather than replace the implant for a second time a few years ago.
I can dream up two reasons why the literature might prefer single to double (though I suspect the real reason is a presumption of reconstruction), but this is pure speculation. One would be less anesthesia time because there's just less to do. The other is that I believe my mother's lymph nodes on that side were removed as part of the original surgery and perhaps that's embedded in the double mastectomy calculation somehow. Conversely, I still have some negligible quantity of breast tissue because the core objective wasn't to get rid of it all. It might be worth asking about a "split the difference" no breast option--frame one as a mastectomy to treat the cancer and the other as "reconstruction"/making it match. (No clue on the insurance implications.)
posted by hoyland at 8:54 AM on January 6
I can dream up two reasons why the literature might prefer single to double (though I suspect the real reason is a presumption of reconstruction), but this is pure speculation. One would be less anesthesia time because there's just less to do. The other is that I believe my mother's lymph nodes on that side were removed as part of the original surgery and perhaps that's embedded in the double mastectomy calculation somehow. Conversely, I still have some negligible quantity of breast tissue because the core objective wasn't to get rid of it all. It might be worth asking about a "split the difference" no breast option--frame one as a mastectomy to treat the cancer and the other as "reconstruction"/making it match. (No clue on the insurance implications.)
posted by hoyland at 8:54 AM on January 6
The size of my BC (9 cm, you read that right) meant that a lumpectomy wasn't an option for me, but I did have the choice of a single or double mastectomy (I did not need chemo or radiation). I chose single without reconstruction, thinking that I should just do what was in front of me, and occasionally doubt that going for a single was the right decision. The surgery and recovery were quite manageable for me, and I don't mind the aesthetics of being flat as much as I thought I would. At the time a double would have been covered by insurance but now, with my final post-surgery pathology (DCIS, stage 0), it's considered "elective" (!!), so that's off the table; that might be one angle to consider. I still have to go every six months for mammograms and ultrasounds on Righty, and every time that "scanxiety" sets in I wish I had just done it all in one fell swoop when it would have been covered by insurance. I was negative for the BRCA mutation but that definitely would have altered my decision if that test had been positive. Have you had that test?
posted by fiery.hogue at 9:08 AM on January 6
posted by fiery.hogue at 9:08 AM on January 6
I have had a preventative double mastectomy without reconstruction due to BRCA1 mutation (I imagine you or your family members might have been tested, but if not, strongly recommend).
I don't know what the medical advice is or what particular outcomes it relies on to suggest recommending one, but that's an aggregate assessment that includes many people unlike you. Some people do find losing their breasts emotionally difficult and I'm sure that plays into the outcomes. This doesn't sound like you, though it's always possible that your feelings would change. I'm guessing another reason is sensation and sexuality, which is also highly variable and individual. Some people report issues with expectations of heterosexual men, but I'd personally see warding those ones off as a benefit overall (can't directly comment though). Desired external presentation may be another, but a person could also wear prosthetics with a flat chest.
For me, I already knew that for gender reasons I'd rather be flat-chested, so unsurprisingly I've been happy with it. But it is also extremely convenient to not wear bras, which you mentioned. And it means the risk (for me, up to 80% lifetime) is entirely off my mind. No more screenings, no more thinking about it, no more uncertainty, it's just a thing checked off my to-do list.
On the whole, I see no reason why you should significantly weight the overall balance of medical advice against your own intuition. I think it is likely affected by the "Very Special Woman Signifier" thing you mention. Stories among BRCA mutation communities are full of doctors pushing reconstruction with weird underlying opinions about how women "ought" to be. I would be surprised if the medical research is not affected by biases. And in any case, you are you, not an average of everyone. So if I were you, I wouldn't worry about going against recommendations.
posted by lookoutbelow at 10:19 AM on January 6 [2 favorites]
I don't know what the medical advice is or what particular outcomes it relies on to suggest recommending one, but that's an aggregate assessment that includes many people unlike you. Some people do find losing their breasts emotionally difficult and I'm sure that plays into the outcomes. This doesn't sound like you, though it's always possible that your feelings would change. I'm guessing another reason is sensation and sexuality, which is also highly variable and individual. Some people report issues with expectations of heterosexual men, but I'd personally see warding those ones off as a benefit overall (can't directly comment though). Desired external presentation may be another, but a person could also wear prosthetics with a flat chest.
For me, I already knew that for gender reasons I'd rather be flat-chested, so unsurprisingly I've been happy with it. But it is also extremely convenient to not wear bras, which you mentioned. And it means the risk (for me, up to 80% lifetime) is entirely off my mind. No more screenings, no more thinking about it, no more uncertainty, it's just a thing checked off my to-do list.
On the whole, I see no reason why you should significantly weight the overall balance of medical advice against your own intuition. I think it is likely affected by the "Very Special Woman Signifier" thing you mention. Stories among BRCA mutation communities are full of doctors pushing reconstruction with weird underlying opinions about how women "ought" to be. I would be surprised if the medical research is not affected by biases. And in any case, you are you, not an average of everyone. So if I were you, I wouldn't worry about going against recommendations.
posted by lookoutbelow at 10:19 AM on January 6 [2 favorites]
To add:
There is some information here on the Force website.
Facebook group - Flat Fashions. It might be helpful to see people happily living their lives.
posted by lookoutbelow at 10:30 AM on January 6
There is some information here on the Force website.
Facebook group - Flat Fashions. It might be helpful to see people happily living their lives.
posted by lookoutbelow at 10:30 AM on January 6
I chose a lumpectomy with radiation because I was more afraid of surgery risks than recurring cancer with a very early stage though large lesion. It’s such a personal decision. There are more risks with cancer-treatment mastectomy than with gender affirming mastectomy because the former takes more tissue including often lymph nodes and I personally was terrified of the risk of getting lymphedema as a side effect. I do know someone who is permanently struggling with lymphedema after a radical mastectomy and it was, for me, not something I wanted to worry about. It’s not always as simple as just lop ‘em off and have no side effects. Everyone feels the various risks differently and I would pay attention to your own personal sense of what you can tolerate worrying about. However the main reason I’m here is to recommend a book: Flat by Catherine Guthrie. It’s a smart personal account of mastectomy in a young queer woman and she’s an excellent writer.
posted by ojocaliente at 10:30 AM on January 6 [1 favorite]
posted by ojocaliente at 10:30 AM on January 6 [1 favorite]
I too had a similar surgery for gendery reasons, and recognize that that's a different situation so won't say a ton more about that experience. However, along the way I considered whether a significant reduction was instead what I wanted/needed, and in researching that it became very clear that there was a real divide between people who strongly identify with having breasts, and ones who don't, regardless of their genders. I would fully believe that, everything else being equal, people whose breasts are part of their sense of body congruity have genuinely better medical outcomes from preserving as much tissue as is safe. That does not mean you're part of that group. If you're simply not at the same risk of, essentially, developing gender dysphoria from not having breasts, then recommendations for people who are needn't apply to you. I'm very glad you feel comfortable advocating for yourself and think it'd be entirely reasonable to hold out for a satisfactory answer to something along the lines of "would a single mastectomy likely give me personally the best overall outcome?" from your own care team that takes into account your openness to an aesthetic flat closure.
posted by teremala at 10:56 AM on January 6
posted by teremala at 10:56 AM on January 6
Oh, also, r/topsurgery does get the occasional post from people in situations like yours who just vibe with that community and want a space that doesn't focus on reconstruction, if you'd like to some other folks to talk to. From what I've seen, people are good about choosing not to engage with threads they can't personally relate to, so it works out okay even though a mastectomy for cancer care isn't quite the same as top surgery.
posted by teremala at 11:03 AM on January 6
posted by teremala at 11:03 AM on January 6
I’ve had a single mastectomy with no reconstruction and am glad I went that route. A double was not in the cards for me as I also needed extensive lymph node removal (13 in total). It doesn’t sound as though you have lymph node involvement, but if you do, ask about a lymphavenous bypass, which can be don’t at the same time as surgery. I had one, and zero lymphedema.
Also (and you probably already know this), breast mounds (the result of reconstruction) have no/very little feeling. The benefits are esthetic (in clothing), and for some, emotional.
All of this is a long way of answering your question: Go for it, and enjoy the freedom of a flat life!
posted by dbmcd at 2:18 PM on January 6
Also (and you probably already know this), breast mounds (the result of reconstruction) have no/very little feeling. The benefits are esthetic (in clothing), and for some, emotional.
All of this is a long way of answering your question: Go for it, and enjoy the freedom of a flat life!
posted by dbmcd at 2:18 PM on January 6
I have chosen elective double mastectomy because of BRCA2 mutation, but here's the thing, I need to loose 5 kg before they will do it, and that is turning out to be very difficult. Meanwhile, I get scanned once a year, and if I feel the slightest bit worried.
Obviously, you are in a different situation, but I am very certain I will go for the double mastectomy if a lump appears, and I wonder what science you are seeing, because I'm pretty sure that would be the medical advice here, too.
I get very conflicting advice from the involved doctors. Last time I had an ultrasound, that doctor said he felt I should stay on track towards surgery. Cancer treatment sucks, both radiation and chemo. Before that, I had a consultation with the head surgeon at the hospital, and he felt I should wait it out and see if anything happens, because it is a big procedure. (He also has a long waiting list after corona).
Both arguments were not so much about the health-outcome as about my comfort (and perhaps that waiting list). And I suppose I'm the only one who can decide that. Someone above pointed out that your insurance will probably cover the double mastectomy now, and not if you later decide for an elective surgery, that's a factor that I don't have to deal with here in Europe.
We discovered that we have the mutation because my younger sister got cancer, and she had the double mastectomy. She says it was a hard procedure, and that she finds it strange to not have any feeling left in that part of her body. But she is primarily happy to be here, and the cancer is now completely gone, since the surgery happened early, before any metastases had happened.
posted by mumimor at 6:52 AM on January 7
Obviously, you are in a different situation, but I am very certain I will go for the double mastectomy if a lump appears, and I wonder what science you are seeing, because I'm pretty sure that would be the medical advice here, too.
I get very conflicting advice from the involved doctors. Last time I had an ultrasound, that doctor said he felt I should stay on track towards surgery. Cancer treatment sucks, both radiation and chemo. Before that, I had a consultation with the head surgeon at the hospital, and he felt I should wait it out and see if anything happens, because it is a big procedure. (He also has a long waiting list after corona).
Both arguments were not so much about the health-outcome as about my comfort (and perhaps that waiting list). And I suppose I'm the only one who can decide that. Someone above pointed out that your insurance will probably cover the double mastectomy now, and not if you later decide for an elective surgery, that's a factor that I don't have to deal with here in Europe.
We discovered that we have the mutation because my younger sister got cancer, and she had the double mastectomy. She says it was a hard procedure, and that she finds it strange to not have any feeling left in that part of her body. But she is primarily happy to be here, and the cancer is now completely gone, since the surgery happened early, before any metastases had happened.
posted by mumimor at 6:52 AM on January 7
My mother chose a double mastectomy with reconstruction and opted to skip radiotherapy because it impacted her ability to get reconstructive surgery. Her first bout of cancer was at 63. She was cancer free for ten years and then the breast cancer returned and spread rather quickly. Partially because it was in the midst of COVID and partially because she was afraid to go to the doctor, but by the time she went to the doctors for her symptoms, the breast cancer had spread to her liver, pancreas, and kidneys. She passed away at 74.
The second session oncologist indicated that while there was no guarantee in life at all, there was a strong possibility that if she'd opted to go the radiation route in addition to the mastectomy, she might not have had a reoccurance. But again, there's no real way of knowing.
Your treatment is completely up to you, but I would advise doing a great deal of research and talk to more than one doctor to get a full review of your options and the possible outcomes.
My best friend has been diagnosed with a slightly different version of breast cancer than my mom had and she has opted for a lumpectomy, some lymph node removal, chemo, radiation, and immunotherapy. She's exhausted, is having wicked ibs flare ups, and frustrated that her treatment is taking so long, but when we get on the other side of it, we feel pretty confident that we'll get to have her around for much much more than ten years.
posted by teleri025 at 5:41 PM on January 7
The second session oncologist indicated that while there was no guarantee in life at all, there was a strong possibility that if she'd opted to go the radiation route in addition to the mastectomy, she might not have had a reoccurance. But again, there's no real way of knowing.
Your treatment is completely up to you, but I would advise doing a great deal of research and talk to more than one doctor to get a full review of your options and the possible outcomes.
My best friend has been diagnosed with a slightly different version of breast cancer than my mom had and she has opted for a lumpectomy, some lymph node removal, chemo, radiation, and immunotherapy. She's exhausted, is having wicked ibs flare ups, and frustrated that her treatment is taking so long, but when we get on the other side of it, we feel pretty confident that we'll get to have her around for much much more than ten years.
posted by teleri025 at 5:41 PM on January 7
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Friend 1 discovered a small cancer in the nipple of her left DD breast and elected for a double mastectomy and small-cup reconstruction. Analysis showed a second type of cancer in her removed breast tissue so she chose a short precautionary session of radiation. Eight years on, so far so good and she loves her much smaller bust. There is a limit to how much radiation you can have in one body area.
Friend 2 elected for a lumpectomy with reconstruction and rado but no chemo. The wound didn't heal well and she needed further reconstructive surgery. The cancer has since spread and she is choosing a palliative path.
Muso elected for a single mastectomy with no reconstruction, using padded inserts when she wants visual balance but she doesn't always wear it. She fuckin' rocks in leather, showing a glimpse of scar and a glimpse of swell.
I've had lady cancer of the southern parts. If my northern lady parts also grew extra inside bits, I would get them lobbed off no question and enjoy the freedom of a flat-chested life.
posted by Thella at 10:48 PM on January 5 [3 favorites]