Hey, im brca1 positive and also have hypermobile Ehlers danlos, which makes my collagen less stable. I want to go for a preventative mastectomy and my first choice would be implants. But I heard some people will get fibrosis/infection or other reasons and lose them…

So I’m looking for a backup-plan. It would hit me very hard not to have any boobs at all.. like to be completely flat. I‘d be fine if my dream of going bigger wouldn’t work and I’m left with my current size (medium -big a cup) or even a smaller medium a cup.

So I thought if the implants would have to be taken out, I’d go for this other method where you take out tissue from another body area (not only fat but also vessels etc) and put it in breasts (where they have to sew the vessels together, is it diep flap?) but the surgeon said that’s not possible because of my fragile eds vessels. They might rupture and I could even die if I had this surgery😅 so that’s not a risk I would take…

Now I don’t know what to do:… not having a backup plan in case implants fail feels horrible….

For this reason my question is: would lipofilling work as a single reconstruction method? To at least get a medium a? Does anyone know? (Like to not take out the vessels and all that, but just take the far and put it back in, I think they call that lipofilling. ) Has anyone had this? Especially as the only reconstruction method? I’m rather thin.. not extremely but I’m also worried i wont have enough fat 🙈

OFC ik cancer sucks and having a significant family history as a BRCA2+ is devastating

BUT… Whenever I have to tell a new doctor my family history now it just feels hilarious

Like how long do you have? how much do you want to know? 😂want me to pull out my family tree? do you want the highlights?

And as I give my spiel and keep naming person after person, I just see their faces keep falling.

It gets to a point where I feel like I have to reassure THEM?

It happens so often that I can’t help but laugh at it.

Idk what this says about me, but what else can I do? I’d rather laugh at the absurdity of my life than spiral so 🤷🏻‍♀️😂

I have BRCA2. I am also a carrier for a genetic vision condition that is only a problem if a kid gets 2 copies of the gene (I have one, obviously). My husband has never gotten genetic testing. We are both ashkenazi Jewish.

We want to have kids and are hoping to conceive “naturally” without IVF. However, before we go that route, we want to make sure he doesn’t also have BRCA2 and is not also a carrier for the same other thing I am (if he has either BRCA2 or the other gene I mentioned, we would pivot to IVF, since two copies of either gene would be a major problem for the child). While we’re at it we’d like to get checked for tay-sachs, etc.

I just have no idea how to go about getting this type of care. The medical office where I got my BRCA genetic testing is cancer-focused and I don’t think they will be able to test us for the vision condition genes, which are fairly rare. We also need to be tested as a couple - or at the very least would need a genetic counselor who could look at both of our results and explain what they mean together. I’m not pregnant, so can’t “ask my OB” as I do not have one. I am planning to ask my PCP but to be honest I don’t think she will know very much about it. She is great on medical issues but not that helpful when it comes to navigating our insane health care system.

I have a few ideas of places to do further research, but in the meantime I’m just wondering if anyone here has experience with this. Has anyone done this in the US? Where did you start? What was your experience with insurance? Did you have to show a cancer history on your partner’s side to get approval for testing? Thanks!***

***please do not say “just do IVF.” That will not be helpful.

I’m based in the UK and currently planning my pregnancy for which I wish to do the PGT testing for BRCA1. I did not grow up in the UK and the whole self-funding/NHS/private care symbiosis is very confusing to me and the PGT being a very niche thing also adds to the complexity.

Is here anyone who is UK based and has done the PGT testing? It would be great to be able to ask a few questions, especially about the NHS funding.

Hi there! I am Brca2+ and had a preventative DMX 2 years ago. I’m 42 and It’s now time for the lower half. I’m so conflicted.

I need my ovaries out—- this I know. But if it’s only ovaries I’m concerned about uterine cancer risk.

If I opt for full hysterectomy I’m concerned about incontinence, lack of orgasm, and quality of life.

Either way id be on HRT for other risk factors. Any advice????

Hi Everyone.

For context I am a 20 yo F in the Uk and i found out I was BRCA 1 positive at 16. I am currently about to start the process of a double mastectomy and reconstruction and I hear lots of good and bad things about reconstructive options. I was just wondering if people could give me advice on what reconstructive options they had (over/under muscle implants or DIEP Flap fat transfer) and whether they are happy with the results. I totally get the aesthetics of the surgery isn’t the end goal and reducing the risk is. But I am still young and I want to be happy at the end of all this mayhem!

Thank you :)

Hello,

I am about 2.5 weeks post op from my PDMX DTI. I’m PALB2 positive, 38 years old, and was told by two plastic surgeons I was too thin for a DIEP. Silicone implants placed over the muscle.

Recovery is going ok, aside from breaking out in painful hives from some contact dermatitis 😵‍💫

My question is: I can see very visible ripples at the top and sides of my implants. Not even when I’m bending over (which makes it worse), but just all the time. If I press my palm to my breast and gently apply pressure, the ripples go away. Is this something that might get better on its own as time passes? My plastic surgeon said that it can take 6 months for the implants to fully settle, and that the ripples could get better or they could actually get worse. I’m curious what your experience has been with this? Did your ripples smooth out on their own? I’m not loving the idea of a revision surgery, but it has been offered after the 6 month period. I’m feel impatient and just want to be done with this.

Thank you!

Hi! This is my first time posting on here but I read the threads often. I (21f) recently received news that my mom had suffered a reoccurrence of her breast cancer and am taking it particularly hard despite it seeming better than previous scans.

Some backstory: my mom (51f) is BRCA 2+ and has been battling stage 4 breast cancer for 6 years with a few reoccurrences and progressions, all typically resolved within a few cycles of chemo but never long lasting. The longest she’s been in “remission” is about a year. These past two years have been particularly grueling as there was a major progression to her lung that was missed in early stages that took very long to resolve. Moreso, the cancer switched from Her2+ to triple negative. Although the lung is no longer a concern, she’s been on chemo for the past two years straight due to minor reoccurrences that pop up each scan — even if all of the previous places resolved.

We are already in a much better place than we were last year, even with this new reoccurrence and she has never felt better both physically and mentally, but I can’t help but be discouraged by the continuous reoccurrences and treatments. She has had very little time to recover from the other ones and she is going to start a new chemo again where she will lose her hair for the second time now.

If anyone here has a similar experience or can share some encouragement I’d really appreciate it. I’m doing my best to support but I have to go back to college right before her treatment starts and it’s tearing me up that I can’t be at home with her.

I'm BRCA 2 positive and planning to get a prophylactic mastectomy within the next year. The one decision I'm struggling with is whether to have a nipple-sparing mastectomy or not.

I'm 29 years old (as of today actually) and my two big concerns are:

1. If I do decide to spare the nipple, that will require an extra surgery. My breasts are such that to make the nipple-sparing work, I would need a breast reduction before the mastectomy. I would then have to wait five months after the reduction to get the mastectomy, which would mean I couldn't do it during the winter as I had hoped to.
2. If I decide not to spare the nipple, I won't have to get that extra surgery, but my concern is that I will have body image issues when I see my breasts without.

So I could use some advice from women who have had this procedure done before:

• For women who have gotten a nipple-sparing mastectomy, do you think it was worth it?
• For women who opted not to spare the nipple, do you regret it? Why or why not?

Hi there, I’m scheduled to have my prophylactic double mastectomy direct to implant on 09/03/25.

The realness is starting to set in. Looking for some reassurance right now. Please, please, please share your positive success stories.

Ask me anything!!

Had surgery Monday morning! Positive for PALB2 gene + strong family history of breast cancer. Had prophylactic double mastectomy with reconstruction. I am 30f with 3 kids ages 1, 3, 6.

Hi all,

BRCA1 here and I have taken the combo birth control pill for 5+ years to reduce my risk of ovarian cancer. The evidence seems pretty robust (something like 50% risk reduction?) so Im happy with being on the pill.

At least, I WAS...until this past year, when I started getting ocular migraines. I had two, talked to my OBGYN, and she adjusted BC dose slightly. But I just had a 3rd migraine with aura today. From what I've been able to google, this means Im at a higher risk of stroke and it is recommended to cease combo BC.

Anyone else on here BRCA1 positive but unable to tolerate combo BC? Im lamenting switching and losing this protection!! My doc said the next thing to try is Depo-Provera, but Im scared of getting a 3 month flood of hormones with no respite if it feels bad. Any advice appreciated.

Hi, everyone!

I’m getting tested for BRCA (I have an appointment) and I’ve been scared. I’m worried about a few things and figured this would be a good place to ask.

1. How long did it take you to get results?

2. Did you get lymphedema if you got a preventative double mastectomy (this especially scares me because I use my hands and arms for my hobbies)

3. What does testing involve (is it just blood work)?

4. How painful is the testing?

I’m sorry if these are invasive questions. Also, I’m autistic and have a lot of social awkwardness, and I’m nervous about communicating with my doctor.

Hi, fellow brca carriers!

How do you go about handling societal expectations to have kids if you've had cancer before kids?

I got married a year and a half ago. 2 months after our wedding, my MRI showed breast cancer. I had a bilateral mastectomy and now I'm on tamoxifen for the next 10 years. We're allowed to pause the tamoxifen after 2 years to try for pregnancy. We have one healthy embryo that doesn't have BRCA. Last night we told my husband's parents about the embryo and they were overjoyed! We swore them to secrecy because my parents and most of my support system are Catholic to the max and just wouldn't support this decision. It felt so good to tell my in-laws! In this Catholic community, there's a lot of pressure to procreate. I have so many friends that are pregnant right now. Even more that have little kids. They want to get together with me but I don't have children, and when we get together as a group they all just talk about their experiences of motherhood. (Experiences that really make me miss having estrogen and make me feel like an alien!)

I know all of them wonder what's going on with my health and fertility, but they are too kind to ask. I don't feel fully comfortable sharing. My therapist has recommended that I start to share. Not everyone is a safe space! Has anyone been through something like this? I'm not sure how to go about it and honestly I'm emotional about it so it all just feels very vulnerable. I wish I had some kind of catchphrase that I could share, but talking about my cancer at all seems to make everyone uncomfortable. I ended up telling one friend the whole story (minus the IVF) and asked if she could just spread the word. Hopefully, this makes everyone feel more comfortable.

Hey!

I am 22f and BRCA2 positive. I haven’t had a consutation with a doctor yet, so I am asking you ladies. My mom has breast cancer at 54, and I know that I want to lower my risk as much as possible. Therefore, after I have all the children I want, I want to do the preventive sugeries, e.g., removing breast, ovaries and uterus(??) also what is up with hormone replacement therapy? I have heard about it, but not sure what it really means. I would be happy if fellow BRCA2 positive ladies shared what kind of preventative surgeries they have had/will have.

Thank you in advance for sharing!

Hi everyone,

I found out today that I’m BRCA1 positive. I’m 33 years old and also 8 weeks pregnant.

This is mostly a rant, but I’d really appreciate hearing from anyone who’s been through something similar if you are out there. I keep cycling between feeling numb, terrified, and then angry and can’t pull myself out of this loop.

I’m upset with my father for not pushing me to get tested sooner. Growing up, he vaguely mentioned that relatives had died of cancer, but it never sounded immediate or serious. Only recently, after I had to pull together a family history, did I realize just how many women in my family died young—around the age I am now. Maybe earlier testing might not have changed much, but I still wish I’d started screenings sooner.

I was so excited about being pregnant—my husband and I have been trying for 7 months—but now I feel guilty about possibly passing this gene down, especially if we have a daughter.

I’m also stressed that I can’t get a mammogram while pregnant. Logically, I know the risk is still relatively low at my age, but my mind keeps spiraling to the worst-case scenario: what if something is found, and I have to face an impossible choice between starting treatment and continuing the pregnancy.

I’m overwhelmed thinking about the choices I am going to have to make around when to get my ovaries removed and when to get a mastectomy. I would love to have a second child but I fear that by the time we can have a second I should already start getting these preventative surgeries done.

If anyone has been through something similar and can offer any advice I would appreciate it. ❤️

I have a salpingoophorectomy scheduled for 7.05 am Monday morning (sept 1). I'm going home the same day. The problem is noone can pick me up until 3.30 pm.

Can I walk a kilometer after this surgery? If I wake up and there's been no immediate complications etc.

I had a double mastectomy because of breast cancer on Aug 6 so I still have bandages from that, but I have been very mobile etc since that surgery.

Hiii -- I have recovery questions.

My journey so far: I'm 44 and have known my BRCA2 status for about 15 years. I opted at first for all the routine screenings so I could focus on starting my family, etc. I decided that at 40 I would do all the preventative surgeries, but then it was COVID and I put it off. So now I'm back in it. My plastic surgeon suggested a reduction/lift followed by the PDMX and direct-to implants approx 3 months later.

I did the first phase of the reduction/lift in May. It went great - totally healed, etc. Initially, they said for that part that recovery was 2-4 weeks. I felt like it took barely 2. Drains were out after less-than 1 week. And even with the drains, I was pretty mobile.

So, the next part is now scheduled for 9/23. They told me that obvi this one is a bigger deal, and that I'd have two drains each side, instead of 1-each, and that recovery would be like 6-8 weeks.

SO my question is -- is recovery really that long? How long should I expect to be down; how long to expect drains? I live with husband and two young teens who are helpful and capable, but should I have my parents come out (across the country) to help? Husband can work from home the first few days, but will have to go back into the office. Kids will obvi be at school all day. Is it much harder/worse than the first procedure?

Does anyone have any insight to the healing portion? Will I need the extra help? I'm sure if my parents did not come out I can rely on my network for like meal trains, etc.

THANK YOU

Did anyone else feel like one boob is larger than the other during the expanding process? I am assuming this will be fixed at my exchange-

I am 24, BRCA 2, and just finished chemotherapy. I am the youngest person I have ever heard of with breast cancer, and I have a hard time with advice from other, non BRCA, cancer patients because they are usually so much older. I have 2 things weighing on me that I would love some input on:

1. I need to make a decision about what to do with my breasts. I am having a DMX. Under the muscle implants vs. aesthetic flat closure? I would love to hear about anyone who had either procedure done young. I imagine it is a little different to get a full reconstruction at age 60 than at 25 and would love to hear about how any younger person feels about your results. I would also like to hear the same about the flat closure.

2. Has anyone had any experience having kids after cancer? How did reconstruction or a flat closure affect your birth experience? My husband and I already have 1 child, who is 1 year old, and I would like to have more kids. The doctors have already warned me it will probably be hard to get pregnant if I am not in ovarian failure and I know I’ll never be able to breastfeed again. But if those are not issues, I worry about if implants would make it more difficult to give birth. Is that a crazy question?

Thanks everyone!

So I'm seeing my plastic surgeon on Thursday and bringing in a picture of someone who has the breast size I want, but they're someone that had implants strictly as plastic surgery. I realize implants due to reconstruction are going to look very different than that, but does anyone know how much, or in what way?

Hope everyone is holding up ❤️

BRCA2, just had my PDMX 2 weeks ago Wednesday (after a lift/reduction in January of this year). I had my post-op last week (1 week out) and my plastic surgeon said he didn't like the look of some of the skin on my left side, but he wanted to give it another week so I went back in today. It's looking better but unfortunately I will need to have another procedure to remove some of the skin that isn't going to pull through. He did say that it's going to be significantly less than he anticipated, so I'm clinging to that silver lining. I'm back in Thursday so he can evaluate if I'm as healed as I'm going to get, or if he needs to wait another week. I might have this procedure as early as Friday. I unfortunately also have to keep my drains in.

I'm just struggling a lot emotionally. I trust my surgeons, and I know logically that this isn't anything I did or didn't do...but I'm feeling like it's a personal moral failing and I can't seem to shake that feeling. I'm the first of 4 BRCA2+ diagnosed female cousins on my mom's side to be able to have this procedure preventatively - 1 found cancer at her pre-op mammogram, 1 had DCIS, and another is dealing with metastatic breast cancer right now. I am so incredibly lucky. And I have an amazingly supportive family, and my husband has great insurance through his work so I'm not paying out of pocket for pretty much anything. I recognize how privileged I am, and I'm grateful.

I'm feeling this weird combination of survivor's guilt (I guess pre-vivor's guilt?) and shame and frustration. I think a part of me thought that since I was able to get this procedure preventatively that I had avoided the big bad outcome, so obviously that meant good outcomes for everything else? I know that's naive, but after sailing through recovery from the lift and reduction I assumed this procedure would go the same - maybe take a bit longer to recover, but I didn't anticipate this. My youngest daughter starts Kindergarten next week and I planned this whole thing so that I'd be more or less back on my feet by the time I had to walk her up to the bus stop at the end of our driveway. And regrettably life doesn't pause just because I'm recovering from surgery - and as lucky as I have been to be a stay at home mom these last 7 years, my kids are young enough that they still need me for a lot (or at least think they do) so it's not like I just get to focus solely on recovery.

I knew this would be a good place to come vent - my husband tries his best and I know he's there to support me no matter what, but he can't really understand some of the deeper underlying issues I'm processing through. Thanks for letting me vent.

I had my PDM nipple sparing in May 2024 (with implants). I had some ischemia on one side but thankfully it did not turn into necrosis, it kind of turned dark and scabbed over, and then healed fine.

Fast forward some time, I started having occasional nipple discharge (usually after a shower/maybe from the heat) and that nipple felt “tighter” on that side, I just assumed it was because that side was always smaller and maybe there was just more room on my left breast with the implant.

I had an ultrasound and they were concerned by what they saw. I had a biopsy which cleared any malignancy and they found PASH, which I think is a type of normal breast tissue. I’ve since had another follow up ultrasound and the area is ill-defined but not growing. I’ve also been having more pain on that side only when I touch or massage, it’s just achey and not like the other side. I asked my surgeon and she said given the circumstances, she isn’t too concerned and thinks it’s just breast tissue that is left behind (which we know happens with mastectomy especially with nipple sparing) and likely as a result of some healing post necrosis.

Essentially my surgeon said if it’s really bothering me (pain wise, the nipple discharge) or just giving me stress/anxiety she can remove the nipple. My initial thought was no I can just suck it up but now I’m doubting myself, is there too much breast tissue left behind? Do I want to be dealing with these symptoms, even though they are fairly mild? She suggested I reach out to my reconstructive surgeon to see if he has any suggestions.

I think I need some advice on what factors I should consider with this decision. My biggest concern is my risk being higher with the tissue that’s there, but we know that mastectomy is not 100% with or without the nipples. If I choose to remove it, I may as well do both sides, and that’s a big surgery, for potentially more complications but maybe better peace of mind and no achey pain? And look wise I don’t know how they will manage removing the nipples after mastectomy has already been done. I don’t even know how to begin to sort out my thoughts! I would love to hear what others would do in my situation.