If you found out you had a cancer gene

[MischiefandMayhem]

DM died 10+ years ago (breast cancer), and it's recently come to light there is a hereditary gene she carries that I may have. I am late 20s, have other siblings that may equally be affected. If you found out that you also carried this gene, what would you do? A double mastectomy seems quite radical, but is that the best solution? Are there other options? Would you do it?

I have it (BRCA2). My mother & her mother had ovarian cancer, & I had breast cancer in 2000 aged nearly 50, but BRCA wasn't mentioned as a possibility at the time. I had lumpectomy plus chemo & radiotherapy & have had no issues since.

However I have 3 adult nieces & 2 adult daughters. One of my nieces, who was done with having children, chose to have ovaries, tubes & uterus removed aged about 42, without a diagnosis, but it turns out their dad (my brother) doesn't carry it so they're all ok. When I was tested they found I do have it, but luckily neither of my daughters does. I also have 2 sons who should probably get tested too as there are implications for men, though less serious.

Anyway following the BRCA diagnosis, as advised I had my ovaries & tubes removed last year, & will continue to have annual mammograms. I honestly don't know if I'd have chosen double mastectomy if I'd found out much younger.

HTH (probably not!) but anyway I hope you are one of the lucky ones who doesn't have it

I have brca2, mid 30s, 1 DC. I was diagnosed in September and I've just had my ovaries and Fallopian tubes removed. Due to have a mastectomy and reconstruction this year. I didnt make the decision lightly but there wasn't any question for me. Everyone is different but I felt like I was a ticking time bomb waiting for cancer.

Hi, I have the brca 1 mutation. Found out 2 yrs ago. I'm mid 30's now. My mother has ovarian cancer, her sister died of ovarian cancer and their first cousin recently diagnosed too. We think it passed down from my grandfather but don't know any history beyond that. There's a 50% chance you and each of your siblings have inherited the gene. If you decide to get tested you will have genetic counselling where all your options will be discussed. They do recommend Breast screening ...mammograms/MRIs every 6mths (mammogram might not be done under age 30 as breast tissue usually too dense). Also recommend pelvic ultrasounds and sometimes blood tests every few mths to look for ovarian cancer. For brca 1 they will advise surgeries (double mastectomy with reconstruction & ovaries&fallopian tubes removed) between age 35-40. For brca 2 surgeries are later at age 40-45. However family history is important as they may advise surgeries earlier if there was an early diagnoses of cancer in the family (usually 10 years before earliest onset I think). Some people opt just for surveillance. It's a very personal choice and you will be supported which ever way you decide to go. Important to note that with regular breast surveillance most cancers are found very early. Also important to note that all screening for ovarian cancer to date is not very effective and most ovarian cancers are advanced at time of diagnosis.

There are 6 of us in my family and 3 of us have the gene. I'm the only girl with the gene so will be the first one making decisions regarding surgeries etc. I've given it a lot of thought and have decided to have all the surgeries. I had 2 children prior to finding out and have had another since. Now that family is complete I will be having Fallopian tubes out this year, mastectomy with reconstruction sometime in the nxt few yrs and then getting ovaries out at 40.
I am glad I was tested and now have the knowledge to have surveillance and surgeries to hopefully avoid going through what my mother went through. Also my children will also know to be tested when the time comes. They are probably the main reason I am choosing to have the surgeries..to be around for them. In saying all that I think I found out about the gene at a good point in my life..I was already settled and had started a family. I'm not sure I would like to have had that knowledge before meeting a partner etc (I would have hated to feel under pressure to settle down or get on with having a family!).

If you decide not to get tested please ask for referrals for high risk breast screening. With your family history and knowing your mother is positive for brca you would be eligible for high risk screening regardless of if you get tested or not. If you get tested and are negative for the mutation..which hopefully you are..you would no longer need the screening. Wishing you all the best. It's all a bit hard to take in at first!

It depends which gene.
I'd review the stats, tbh (am not up to date).
The last time I looked this up, with low lifestyle risk factors, the breast cancer genes seemed to give you no higher risk of br-cancer at 50, but much higher at 70. So I'd probably wait until mid60s before seriously considering a masectomy. But I haven't had to decide, tbf.

Friend has family history for ovarian cancer so probably has genes for ovarian cancer. Now that I'm 50, I'd whip those ovaries out no hesitation if I tested positive for a menacing gene. Friend has chosen to not even be tested, though, and I support her (a little reluctantly coz I don't want anything bad to happen to her). She's thought hard and feels happier this way; her decision. She talks about her husband making similar decision not to get CRC screening (when offered).

I feel like there is huge pressure now that women MUST get radical surgery if they find out they carry high risk genes. That pressure feels all wrong to me. It's a personal decision, no right or wrong.

Thanks everyone for your replies. It's not BRCA1 or 2, they were negative so it's a different new one. Apparently it's one that causes cancers in early life (40ish), and isn't solely breast cancer although that's the most common one. It's also resistant to most cancer treatments. DM got diagnosed at 40, died at 48. Quite scared, although looking on the positive that there's only 50% chance I have it. There being three siblings, the chance that at least one of us have it is very high

Would you decide not to have children (or try to get selective IVF so that you didn't pass the gene on)?

Is the risk at all modified by lifestyle factors, can you reduce the risk with lifestyle choices?

Do you know if it's a particular type of br cancer you'd be at extra risk of, what are the survival rates for that specific br-cancer, is there any way you could make sure to have early detection.

How much does your risk increase with this gene, what is the chance that you'll get to 70 with no cancer even though you had it.

(Told you I'd look at all the stats to decide)

Hi everyone, I just thought I'd come back to this thread to update it. I do have the gene (similar to BRCA2 but not quite) which gives me a 60% chance of developing breast cancer in my lifetime. I have decided I will have a preventative double mastectomy, but now the question is when to do it? I'm 29 and was hoping to start a family in the next few months with my DH. The wait for the surgery is about 1 year and I really don't want to have to wait another year before trying if I can help it.

However the doctor said that they don't recommend having the surgery with a young family as you can't lift anything for about 3-6 months post-surgery. So do I just wait for a year for the surgery, then another 6 months to have recovered before starting my family?

Or do i go ahead as planned now, have two children close together (if I'm able to obviously) and wait for a few years - when I will be in my late thirties and at a higher risk?

I know what I want to do, but I don't think it's the logical or sensible option! What would you do?

It's such a hard question " what would you do" I had breast cancer in 2012 at aged 42. I was tested in 2013 for BRCA genes didn't have that, then a couple a months ago I tested positive for new faulty gene mutation of BRCA gene and so has a distant cousin, so there could be a link. Anyway if I had known b4 2012 I probably wouldn't have had double mastectomy or anything. I would just check your breasts each month. I have 3 DD aged 17, 16 and 13. I will urge them to self check and be aware of any changes etc. I'm hoping in 10 years science will have moved on and there will be more info for them. Feliciswolf you are young at 29. If you think it will give you peace of mind go ahead have op but as you want to start a family it's a hard one, it's the not knowing. If breast cancer is found early you can be treated, but so many women are unable to have children afterwards due to chemo and onset of early menopause etc. If it was me I would have my family first, then if you still want op go ahead and book it. (I didn't have a mastectomy) just have yearly mammogram and on tamoxifen for 10 years.

@Dotis thank you for your reply! Out of interest, why would you still not have had a mastectomy had you known you were at risk before your diagnosis? The stats I've been given say that it reduces my risk from 60% down to 5% (population risk is 12%), so I am thinking that if I can reduce my risk that drastically so I don't have to go through being diagnosed, subsequent treatment and potential reoccurrence then it's worth it. But I don't know if I'm missing something? Is it personal preference or is it that this is a much bigger deal than I realise?

Oops also I realised I namechanged, sorry! It's still me!

My friend is in this position. She can't see the benefit in putting herself through years of what-iffing and uncertainty so is having a full mastectomy. She's late 30s and just wants to get on with life. She's having reconstructive surgery at the same time. I should point out she's had kids already so future childbearing is not a factor in her decision.

Could you get help in with the kids, so kids first, then surgery when they are preschoolers? Would you like to breastfeed?

Would pregnancy increase your risk of developing cancer?

I would seek medical advice on this, it’s too high risk to speculate x

@LittleAndOften That's what I'm hoping to do - it would be full reconstruction at the same time as it's preventative so there's no need for treatment in-between. And it's good to hear that she's had kids first. Can I ask how old they are?

@namechange5575 I have in-laws that I'm sure would help as much as they can, but FIL has quite a few complications with a chronic health problem and MIL is his primary carer so I think it would be more helping out occasionally rather than being able to rely on them for primary childcare during weekdays. My father has another health problem that affects his motor functions so equally will be able to help to a certain extent but not fully. I do have a good family support network but they work, so it would be evening and weekend help which won't be the times I would need support really. Between everyone I am lucky that I have plenty of people that would help out as much as they can though

@Whoops75 Pregnancy has no impact on the risk - I am no more likely to get it if I have 5 children or none, it's just a 60% likelihood in my lifetime, the risk increasing from the age of 30. I have spoken with my doctor about it and she said it's up to me which way round I want to do it, but all she said is that they don't advise the surgery with young children. Also I can't have the scans (which will start annually from next year - MRI until age 49 or until the surgery) if I'm pregnant or breastfeeding, so the likelihood is that I wouldn't breastfeed for long anyway so I don't miss out on too many of the scans

Hi Feliciswolf I never knew I was high risk b4 diagnosis in 2012 I just knew paternal grandmother and her sisters all had BC at some point in their lives. I only got tested because I had 3 daughters. I thought I was ok then got the call a couple of months ago that they had tested me again and found this new mutation gene as things have moved forward since 6 years ago. I had original lumpectomy in left breast. I did say at first that I wanted double mastectomy but surgeon was reluctant to do it. I think looking back I was in shock with breast cancer diagnosis etc. My genetics doctor is now keeping me posted about latest news so I may in future need ovaries removed and possible have double mastectomy. I just wanted to answer your question about having children etc. I'd have them now then if you still feel you want op have it afterwards. I'm glad I had my children first as I had no idea that chemo and tamoxifen made women infertile and brings on early menopause etc this was prior to me knowing all about breast cancer. I hope you never get diagnosed but so understand you wanting to give yourself the best chance by having preventative surgery. I just hope my girls never get this horrible disease xx

@FelicisWolf of course - they are 5 and 7 x