Does anyone else have Brca2 fault? what happened?

[2greenroses]

If you have a Brca2 2 fault, please share your experience of how you found out, what happened? How far did it spread through your family? Who got tested? On what basis did people decide to test or not? Any clues in your ancestry? Any fears for the future? Any victims? death rate? Thankyou

I was found to have this fault last month, and I already have stage 3 cancer

Maybe it’s unusual. I hadn’t heard of it myself until I was told I had it

I don't have it but my grandmother did - she died of ovarian cancer. She had three daughters. Two were tested, one had it, and she also died of ovarian cancer. The one who had it, had two daughters herself. They were both tested, one had it. That one has had a full hysterectomy now that she's finished having children.

thanks for answering. I hope it’s ok to ask you a bit more. What age did she have a hysterectomy? How did she stay safe before the hysterectomy? Did she have her breasts removed too? Any issues for the males in your family? Thank you

Try speaking to the charity ovacome. Their staff are really knowledgeable on this.

It's quite a well known gene that causes cancer .
Google Michelle heaton , she has it and had a preventative hysterectomy and mastectomy .

Have you got other women in your family who have had breast or ovarian cancer?

If you have it I expect they willl do preventative scans . I don't have it but very woman in my family has had breast cancer so I have a preventative mammograms yearly and checks .

There are very few women in my family, and I’m not in touch with them. Mother and grandmothers died young

OP I have the BRCA1 gene (BRCA1 is a bit more scary than BRCA2 according to my consultant). I’ve had a mastectomy with reconstruction and after I’ve had DC3, I’ll be having a hysterectomy.

I have a full family history of breast and ovarian cancer which lead to testing. I have two daughters and DC3 is currently unknown! There are only two of us uni immediate family who tested positive for the gene. Three have escaped it.

thanks for answering. Do I understand you have had your children tested? Please can you say a bit more about that. What age? What do they know? Thank you

I really want to get this rest done op
Can I ask where is best to get it done?

I was referred for testing through my GP

@2greenroses My DD’s have not been tested because they are too young but they are aware that mummy’s boobies could make her poorly so I had them removed. Eldest DD does ask questions occasionally and I try to to be honest. Both DDs had already been born before I found out about the gene.

As for myself, before DC3 I had regular ovarian scans and blood tests but I understand these are not reliable. I’m early 40s so time is ticking for me (rates of ovarian cancer with this gene increase dramatically after mid 30s).

In men this can also cause the agressive form of prostate cancer, so any male relatives need to be aware, too.

@newtb is correct, the gene also affects males. Although I understand at much later life stages (average ages 70yrs onwards) in comparison to women who have higher risks at much lower ages and stages.

Risks also much higher if you have any ashkenazi Jewish heritage on either side

I have BRCA 1. I had my breasts removed at age 35, soon after I was diagnosed and my ovaries removed at 40. It was hard but a relief as both my mother and her mother had died of Ovarian Cancer.
Please feel free to message me if you'd like x

FIL has it. His mother died of breast cancer and his sister had breast cancer. She was tested for BRCA and had BRCA 2. He was tested and found to be a carrier. DH and his sister were tested. DH not a carrier, SIL is and has had an hysterectomy preventatively but not mastectomy yet. SIL has no kids.
DHs aunt and FIL were both diagnosed with bowel cancer in the same week in 2021. DHs aunt died May 2022 and FIL has made a recovery.
Not sure if DHs aunts kids were tested, don’t think so.

Are you allowed to request this at your GP?

My mums just had Breast cancer.
My grandad died of prostate cancer
my auntie (grandads above daughter) has had breast cancer in her 30s and she’s had ovary cancer (full hysterectomy).

I don’t know about the family much further back and how they died to know if it was cancer.

Yes your gp can refer you for genetic testing. It sounds like it might be a good idea in your case @Looenewcomer

Thanks. I didn’t know the gp would do it. Feels a bit odd asking for tests when I feel well but it makes sense.

I thought you could only pay private and it’s around 1.4k.

I was told by my birth family the Brca2 gene was in their family with my birth mum having it and passed away from breast cancer. My birth siblings are in Oz, where my birth mum lived latterly.
I went to GP with this and worried re ovarian cancer symptoms, but I found that was coeliac fortunately! Anyway I was referred to genetics and breast clinic. You will I think always be referred for genetic counselling before you can have a test. You also won’t have a test unless a known gene, most commonly brca, has been identified in your immediate family, or you already have cancer. As there was nothing official in my birth mum it was decided this was a misunderstanding of her having the gene, plus my birth aunt, UK, who also died of breast cancer, definitely did not have a known gene issue. Therefore, there was no need for me to be tested I was told. I am however under family history for yearly mammograms and I was offered cancer reduction meds - Oz do it differently as my birth sister had a preventative hysterectomy anyway.
My own children get nothing additional such as early mammograms unless I or my birth sister get breast cancer, as it has to be immediate family who have the gene/cancer, as per NICE guidelines - so on this basis I turned down preventative cancer medication.
So to answer your question then immediate family can be tested from 18, but will be referred for genetic counselling first to ensure they are prepared for any answer. If positive- and I have a fiend with BRCA1 then scans and options for preventative treatments are offered - mastectomy, hysterectomy- or lower intervention of regular mammograms. You can have ovarian scans but they are only as good as the day you are scanned and can appear and become aggressive between checks. Also ovarian is linked mainly to BRCA1 so not sure if they scan for 2.
It all seems scary, and guess it is, but there’s a clear structure and process that you, and family, will be supported through - you should get all relevant information on this from your health professionals.
All best wishes and thoughts with you.

Thank you
x

She had the hysterectomy at 38. Not sure how she kept safe before that I'm afraid. No, didn't have breasts removed because in our family it seems solely to affect ovaries. No, no issues for males as yet but she's the only one with sons so far, and they are not yet 18, so it remains to be seen.