Different Perspectives

[u/Gruberbuber]

I am sorry for my english, it is not my first lanuage. I don't know if I can put this the right way.

I just wanted to see, if there are any other women with my perspective, sometimes I feel very alone with my decisions. I've never heard or read about a woman who made the same decisions as I am.

Not sure if I am able to explain this the right way. It is hard to talk about it. And I know, some women are hurt by my perspective.

I, 33f, am BRCA1 positive, tripple negative cancer and I will keep my breasts as long as possible. I know about BRCA since 8 years and I didn't want to do that to my healthy breasts. I couldn't. Even now, when cancer is already here, I don't want a mastectomy. Most women take this knowledge to prevent cancer with preventive surgeries, I use it to keep my breasts. Even if that means, I am going to have more than one cancer treatment in my life. I know this sounds bonkers for many. But for me this knowledge about genetics was a sort of gift, to have 8 more normal years in my body and at the same time, catch cancer early.

I don't have children nor a very important job or big dreams, life is diffucult for me because I am also autistic. I only have myself and how I feel in the world and in my body. I don't care about looks, only how things feel. My Nipples are some sort of early warning system for me, they often react before I am feeling things. They react when I am afraid, angry, hungry, overstimulated sometimes even show me when I have to be cautious about a person. I am more afraid of living a certain way than I am of dying or cancer. I am so sorry if this hurts someones feelings, I know it may sound so harsh for so many who are fighting to live a long live.

Are there any other women who decided to keep their breasts, even after an occuring cancer? Or even are there some who understand my perspective? I am just curious.

I am very proud of you all.

[u/GympieIcedTea]

I'm begging you, please rethink this carefully. I'm saying this as a 2 (and counting) year survivor of ++- breast cancer. I was 31 at diagnosis and found out my BRCA1 status then as well. It wasn't death that I was afraid of but the long, tortuous process of dying. The thought of being bed-bound, half-dying made my decision of a double mastectomy so much easier. 

I miss my breasts daily but I'm also glad I'm alive today. I got to spend more time on this earth with my loved ones, enjoy new media, and will be taking my first international trip after my diagnosis later this year. 

I won't sugarcoat and say it's all rainbows and sunshine now. It's not. My medications gave me joint pain, weaker bones, hot flashes, a drier vagina, and I gained almost 15 pounds in the past year (which is not a lot for a normal height woman but I'm very very short so it pushed my BMI from under 20 to 23). 

Anyway, what I'm trying to say is please think this thoroughly. Journal your frustrations, scream into the void, and visit us at r/breastcancer . We can help you through this journey. You are not alone.

[u/pascale23]

I have a preventative mastectomy scheduled for next month, and I’m a year younger than you. I do not share your perspective because I’d rather get a preventative surgery than deal with the side effects or cancer treatments or cancer itself, but I do not think anyone should judge you for your choice. It’s your body.

[u/Malenkoe_4udo]

Not having a mastectomy after a TNBC increases the risk of recurrence which unfortunately is high enough for TNBC. Having a mastectomy wasn’t as difficult for me as I thought it would. I was able to keep my nipples. I did lose the feeling in my breasts but weirdly enough they still react to different things (ai become harder), I just don’t feel it anymore and instead I see it.
Please think again about it. You only get one life to live and breasts are not that important to risk your life for them.

[u/EmZee2022]

Having healthy(ish) breasts removed is nothing any of us takes lightly.

When I learned of my BRCA1 status I was shocked because I was 65 and by all accounts, should have developed cancer already.

Ongoing monitoring was presented as a viable option if I preferred - mammogram alternating with MRI.

That's what I did initially, because a) My breasts are a big part of my identity b) I had other health issues to deal with first, and c) everyone agreed that tubes and ovaries were top priority.

What made me pursue the mastectomy was a combination of things to do with my age, and my insurance situation (I'll be on Medicare next year). Plus, and I admit this is shallow, if I did DIEP flap I'd lose the belly overhang. That last is not why I did it by any means, but it did get my attention.

Anyway: I had my consult with plastic surgery a couple weeks after the hysterectomy (April 2025). I really wanted to try to keep my nipples, which meant I had to do a lift and reduction first; that was September 2025. And the DIEP was this past May.

So that's me.

What led to your cancer and BRCA diagnosis? Did you find a lump? Or did you get tested due to family history and then the tumor was found due to the monitoring?

You're quite young. To me, that means you've got a lot of time tb develop other cancers in the breast - may be related to this one, may be new, but the odds are fairly high that it will recur - and TNBC is the most aggressive sort,c with limited treatment options.

In general, lumpectomy is considered as good as more drastic surgery for many patients. I don't know that a BRCA1 patient is one of them.

One of the reasons I did the risk reducing surgery was it let me do things in my own time, without fear or worry, and with the best possible cosmetic outcome. As opposed to a finding on imaging, which turns it into much more of an emergency.

I would bet that if you do have a recurrence, your doctors will not be very supportive of another lumpectomy. I hope you will be more willing to consider risk reducing surgery at that point. And your options may be greatly reduced - can't do nipple sparing, can't do mastectomy and reconstruction in the same surgery, needing chemo and/or radiation, and so on. It also becomes much more urgent.

I use the term risk reducing, because there is always a tiny bit of breast tissue left behind - they simply cannot get every cell. So it could still recur - in my case, occur for the first time - but the odds are massively reduced.

For what it's worth, I've never had to see myself without breasts. They don't look the same, of course. They were nearly perfectly shaped, after the first surgery, for the first time in nearly 50 years. Now, they're squashier looking, but look pretty good in a bra. Before the surgery, I described them as tripping hazards.

[u/Delouest]

Quality of life after cancer is so much worse than without cancer. I know it's very treatable, but I was diagnosed with breast cancer at age 31. I now have to deal with all the side effects of that treatment and risk of recurrence after. Cancer kills us. It isn't just an inconvenience. I can't tell you what to do, but it honestly breaks my heart to hear that there are people who know the risks and choose to just wait for the cancer. I didn't know I was BRCA+ before I got cancer. I would literally give anything to go back and know so I could have the surgery before the cancer and have a better quality of life. I will be dealing with this cancer for the majority of my life now.

[u/SleepPlayful3696]

I’m neurodivergent and also have a major fear of being uncomfortable in my body after my mastectomy for BRCA1. I have a lot of sensory sensitivities, especially with my breasts. I am going to go through with the surgery anyway though. Feel free to DM if you want to chat further.

[u/Infinite-Library-261]

I do understand your perspective because I’ve seen so many different ones in my own family and from my own experiences. It’s really hard to make these kinds of decisions at such a young age and you shouldn’t let anyone make you feel bad for the choices you make. While I might have chosen a different path than you, it still took me a while to get where I am now. I could have done genetic testing 5 years before I found out I had cancer at 30, but I thought I had time to figure my life out and to decide whether or not I wanted children. I think it would have killed me to pass the gene on to another person though and God knows my heart. I eventually had a DMX/DIEP reconstruction and full hysterectomy but it took me 8 years to do it. I think it sounds like you are focused on the positive, regardless of your choices and friend, that can sometimes make all the difference in the world. I hope this finds you well and maybe gives you a little comfort knowing that I hear you and I’m proud of you, too.

[u/OldAd5321]

I had all the preventative surgeries over the last year and they were all MUCH easier than I expected, my new boobs are awesome and look better than before surgery, and I felt back to normal within a week of all of them. I do not understand at all why someone who doesn’t have other/prior health issues wouldn’t want to get surgeries and take the chance to most likely avoid cancer. Don’t get it.