Brca2 and a ovaries

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u/Competitive-Pea-7116 BC Survivor + BRCA2 1d ago

I’m 42, BRCA2, and had my DMX last year followed by having my ovaries removed last year. I actually had a hysterectomy about 5 years ago due to large fibroids (so went into all of this opposite than most). I can say, personally I have not experienced incontinence and orgasms have not been an issue. Navigating HRT has been interesting, but work closely with your doctor to titrate to get the right dosage.

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u/Upset_Code1347 1d ago

I am 60, am also BRCA2 and recently had my ovaries and tubes removed. No uterus removal needed for me, as that risk was more for BRCA1 patients. Just check with your doctor.

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u/Cactus_Salamander 1d ago

Christ, I’m a BRCA1 carrier and thought only my ovaries were recommended for removal 😩

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u/HotWillingness5464 1d ago

In Sweden, only removal of tubes and ovaries (salpingoophorectomy) is recommended for BRCA1+. I just had mine removed this morning, I'm writing from the hospital 😃 (I'm BRCA1+, found out when I was diagnosed with triple neg breastcancer in Jan 2025.)

Uterus removal (hysterectomy) is optional. BRCA1+ carriers do have an elevated risk of serous uterine cancer.

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u/[deleted] 21h ago

[deleted]

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u/HotWillingness5464 21h ago edited 18h ago

I have consulted with my oncogeneticist about this. He's head of the dept of hereditary cancer at the academic centre which is in charge of my cancer care. So I'm not guessing or trying to push anecdotes as truths.

There are national guidelines and recommendations. I dont trust ours. Universal healthcare is great, but money is always tight, so patients get the bare minimum unless they're particularly interesting cases.

I don't want serous uterine cancer, so I'm planning to request a hysterectomy. But right now I'm healing from both a double mastectomy (Aug 6) and a salpingoophorectomy (this morning), so I thought it wiser to wait. I was probably wrong about that too.

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u/Cactus_Salamander 12h ago

I hope your recovery goes well!!

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u/HotWillingness5464 4h ago

Thank you 💚 Yesterday was awful tbh, but I dont think that's necessarily the most common experience, my body is still in the aftermath of neoadjuvant breast cancer chemo + immunotherapy and a double mastectomy.

I feel better this morning, I hope I'll keep improving today!

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u/Ordinary-Sundae-5632 1d ago

Patients with brca2 do not need their uterus removed, just their ovaries and fallopian tubes. But hopefully someday the research will show that it's just the Fallopian tubes!

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u/Comfortable_Sky_6438 1d ago

I'm 43. Have had breast cancer twice so had my dmx last year with the second cancer. I was set to have my ovaries out this coming November but I've recently changed my mind and I'm just gonna do the tubes. I feel like worst case scenario there's an 80 percent chance I don't get ovarian cancer, probably even more if I do the tubes. I've been in chemical menopause for arbor a year now but I'm thinking of stopping ovarian suppression. The quality of life issues are more important to me and based on my family history there's a higher chance of dementia, osteoporosis and heart disease that would be exasperated the sooner I am in menopause. My risk tolerance and Q quality of life equation may be different than yours but I've been thinking a lot about this lately and this is the decision I've come to.

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u/SpiritedBluejay157 22h ago

Hi there. 46, tested BRCA2+ after being diagnosed with breast cancer, ++-, stage II. I took the advice of my doctors and had a BSO. I requested a hysterectomy as well because of constant fibroids and they found endometriosis there as well—so I was glad of that choice—should have done it years ago! The physical recovery was not terrible but the surgical menopause combined with the hormone blockers has been brutal. I feel like a different person. My sister has BRCA2+ and plans to only do the tubes.

I think about stopping the medication every day. I fantasize about seeking out black market HRT—lol I won’t. I will give the meds more time, but I am also willing to stop if these side effects persist.

Comfortable_Sky_6438, do you know how BRCA2+ influences distant BC recurrence after a DMX? I assumed it would but can’t find any data and my doctors give non-answers.

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u/Comfortable_Sky_6438 22h ago

I think it's less about the brca 2 in that case and more about the specifics of your cancer and oncotype but even that is highly treatment response dependant. For example my first cancer was highly aggressive tnbc but no lymph invasion and responded really well to chemo I got PCR (no cancer left after chemo) that was nine years ago and it is pretty much no chance coming back. My second cancer was ++- but aggressive grade 3 and oncotype 44. Before treatment they told me very high percentage of it coming back distantly. However I had no lymph invasion and this time I had lumpectomy before chemo but didn't get clean margins so was able to find out that there wasn't any left when I went for my dmx after chemo so again responded very well so my chances of recurrence have gone down. And I did the signetera test and it was negative so I'm feeling pretty good about it. Of course you just never know. I do put all my info into chat gpt and ask a lot of questions. I find it very helpful. What kind of bc did you have?

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u/SpiritedBluejay157 15h ago

Thank you for your response! Sheesh. Two different breast cancers within 10 years—intense. And 44 is a huge oncotype. Mine was ++-, stage II, grade 2, 3cm, no nodes. Oncotype was 16–which was in the low-intermediate range for me. The oncologist said chemo was up to me and wouldn’t make a recommendation one way or the other. I chose no chemo but it was a difficult decision and now I’m considering stopping ai’s… It seems like reasonable risk…? Still can’t shake the fear that BRCA2+ makes me more vulnerable to recurrence than someone with a similar diagnosis, but without the mutation. Did you discuss stopping ovarian suppression with your oncologist? I’m dreading that discussion if I choose to stop the meds…

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u/Comfortable_Sky_6438 13h ago

Yes two different kinds 8 years apart. The thing is the first time I tested negative for brca and there's no family history of breast cancer so I thought it was a fluke. ( I was also only 34) So I chose lumpectomy. This last time they tested again because of new advancements and second type of cancer but age 42 and it came back positive hence the double mastectomy this time. ( This last year has been crazy as a result of all this I also found out my dad isn't my dad and still no family history of cancer so I'm just super unlucky) Hormone positive has tendency to reccur later, but with my aggressive type still now likely in the first five years. The brca isn't increasing chance of recurrence but increases the chance of a new primary like in my case. I never started ai. My doctor saw that I was reluctant and want my quality of life so she suggested we start slow. I started tamoxifen in February, did fine with that and then added in ovarian suppression I think in March or April. I just made the decision about stopping it in the past week and plan to call and make an appointment to tell her that tomorrow when the office is open. I also haven't yet told her I'm not gonna remove my ovaries in November and just do the tubes. Our plan had been to revisit the AI conversation in January but obviously if I stop OS I'm not doing AI either. The percentage that taking AI instead of tamoxifen decreased recurrence risk was only about 2 or 3 percent. That was not enough for me given the other risks of bone loss, heart disease and dementia that already run in my family plus all the side effects. Stopping OS is another 4 to 6 percent and I'm sure she's not gonna be thrilled. I want to go over it with her again but I'm pretty set on balancing my quality of life and using my ovaries as long as possible to help prevent all that other stuff. I also think stopping OS might help my sex life even while on tamoxifen. Also tamoxifen actually protects my bones, it does increase the chance of uterine cancer but only by 1 percent. Also this might be TMI but a side effect that I can just not tolerate that I think is from OS is that my tissues down below are just so thin that not only is sex painful and not enjoyable but whenever I have a bowel movement I get tiny tears in my perinium that hurt badly and bleed a little. I know they say do all these moisturizers three times a week but look I'm gonna be honest here I'm simply not going to do that. If I end up getting a positive signetera test then I will revisit adding in os and ai. I get the signetera test every three months and it can predict a distance recurrence 11 months in advance.

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u/Life_Ad5092 22h ago

Hi! I was 27 when I was diagnosed with BC and I’m BRCA2+. I wanted a BSO first and wait for the ovary removal when I’m older, but my team said that was pointless and would only do the surgery if it was removing the ovaries. I really don’t want to have my ovaries removed at this age! So your team recommended the BSO?

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u/SpiritedBluejay157 15h ago

Yeah—I took their advice and did the bilateral Salpingo-Oophorectomy. I would have been prescribed ovarian suppression, so it made sense to me. I’m older than you though! My sister’s doctor at Dana Farber was very encouraging about just removing the tubes as a way to mitigate the OC risk. My sister is also BRCA2+ but has not had breast cancer.

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u/SpiritedBluejay157 22h ago

Hi there. 46, tested BRCA2+ after being diagnosed with breast cancer, ++-, stage II. I took the advice of my doctors and had a BSO. I requested a hysterectomy as well because of constant fibroids and they found endometriosis there as well—so I was glad of that choice—should have done it years ago! The physical recovery was not terrible but the surgical menopause combined with the hormone blockers has been brutal. I feel like a different person. My sister has BRCA2+ and plans to only do the tubes.

I think about stopping the medication every day. I fantasize about seeking out black market HRT—lol I won’t. I will give the meds more time, but I am also willing to stop if these side effects persist.

Comfortable_Sky_6438, do you know how BRCA2+ influences distant BC recurrence after a DMX? I assumed it would but can’t find any data and my doctors give non-answers.

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u/SouthbutnotSouthern 23h ago

Do you know the uterine cancer risk? It’s like … maybe 2%. In BRCA2. I’m not habitually removing organs for that sort or risk. No one would have breasts in that case. Uterus removal is NOT a recommendation in BRCA2. What guidelines are you referring to.

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u/Amanda7423 20h ago

Has anyone had just 1 ovary removed with tubes? If it’s for preventative measure, I feel like it’s all about the numbers/odds. I’m 40 and very nervous about the risk of removing ovaries and estrogen from my body but also obviously nervous about ovarian cancer, so there seems to be no easy solution ..thank you all in advance!!

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u/Just-Seaworthiness39 14h ago

I chose to get a hysterectomy and tube removal last year at 44. I have a high risk / family history for all of the bad parts of surgical menopause. Soooo fast forward to now…I’m scheduling surgery to get my right ovary removed due to a possibly suspicious cyst. My gynecologist-oncologist is going to leave my left one if everything looks okay on that one. If you have constant cysts on one ovary, ask if that might be able to be removed to prevent risk and concerns during your surveillance period (I go for scans every six months and do CA-125 labs).

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u/Amanda7423 12h ago

Oh that’s very interesting! And when would you get the other ovary removed? My left ovary actually gives me problems when I ovulate (always has) but they’ve never found a cyst when I’ve had ultra sounds- but I feel like that would be the one that should go first. How was the hysterectomy and tube removal?

I realize I failed to say I’m coming off of DMX (DCIS in my right breast- that’s how I found out about BRCA2), exchange surgery coming up in November/December, and then I’m moving onto this so Im not exactly procrastinating just trying to find the best time to fit it in

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u/disc0pants 1d ago

If you search on here you’ll find lots and lots of women discussing the same question and providing experiences. My advice is to meet with a gyn-oncologist so they can determine if you’re even at risk for the things you list.

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u/Just-Seaworthiness39 14h ago

Trust me…the surgical menopause is more of problem for quality of life than the hysterectomy. Hysterectomies typically improve quality of life in many cases.

Yes, if you have a full oophorectomy please ask for HRT. Also keep in mind that if you don’t get a hysterectomy at the same time, you’ll have to have progesterone as well to prevent uterine cancer. Which ironically progesterone increases breast cancer risk.

OR if you don’t have a family history of ovarian cancer, you could choose the middle way and get a hysterectomy with tube removal (bilateral salpingostomy w/ delayed oophorectomy). Taking tubes out helps with prevention as a lot of OC is thought to originate in the fallopian tubes.

I choose the middle way because I don’t have a family history of OC. But I do have a family history of early onset dementia, bones issues, and depression…which surgical menopause can put you at higher risk for. NOW THAT being said, I’m having my right ovary removed next month due to a potentially suspicious cyst.

So it’s kind of a pick-your-poison sort or pick-your-hard kind of situation. At the end of the day, pick what are trade offs for you and your health. The point is to eliminate risk without totally f*cking up quality of life. Good luck, OP. All of this stuff is overwhelming. So I hear ya.

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u/Cross_stitch_sitch 1d ago edited 1d ago

Hi there! I have BRCA 2. I had Breast cancer briefly last year (DCIS) I had a mastectomy and last Friday I got my ovaries and tubes out so I'm freshly in recovery.

Because I had breast cancer, I had to meet with an oncologist (whom also survived BC) and an amazing obgyn who preformed my most recent surgery. They both said BRCA doesn't affect uterine or cervical cancer and were both comfortable with my choice to keep them. I opted to keep my uterus and cervix since it's less invasive and kind of keeps things in place in there.

I have an IUD in for Progesterone and an estrogen patch on. So far so good with recovery. I'm really glad I kept my uterus.

Brca2 and a ovaries

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