BRCA gene carrier

Hello there, I am new to this… I am a 31 woman and I have been tested positive in BRCA gene mutation. I would like to know whether anyone is going through this and what advice they could give me… I have been advised to consider preventative surgery. Thank you xxx

Hi Honeysuckle,

I have a couple of friends who have the BRCA gene, one of them didn’t know this until after she had BC at 34, and since having the test has had her ovaries removed as well as a double mx.

My other friend was also tested as lots of relatives have had BC, (mother, grandmother, aunties) so she has had preventative surgery (a double mx) in which they did find pre-cancer cells…

Its a very personal choice and you need to make the right choice for you, based on the information you have.

Good luck

Sarah X

Hi Honeysuckle,

I have put for you below the link to BCC’s publication ‘Breast cancer in families’ which you may find useful. You can either download a copy or order one free of charge on line. Also, if you would like to talk to someone in more detail about this then please feel free to phone or free phone helpline where the staff will be happy to help. The helpline is open Mon - Fri 9-5 and Sat 9-2 0808 800 6000.

BC in families:
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/70/

Take care,
Jo, Facilitator

hi honeysuckle

i a a brca 2 carrier… i only found out in january i carried a mutation after getting breast cancer for the second time last year age 40… was 37 the first time.

i had a lumpectomy on each side following the cancer and am now on the waiting list to have a double mastectomy and reconstruction next year but still not 100% certain im going down this route at the mo.

i have also had a hysterectomy and my ovaries out 3 months ago and recovered well from that.

i also work as a breast care nurse in genetics which i only started earlier this year but i find all the gene stuff fascinating and totally empathise with my patients.

Lulu x

Hi Honeysuckle

I am 39 and found out a year ago I have the BRCA2 gene. My siblings were tested too and two out of the five of us have the gene.I have decided to have preventative surgery and about 8 weeks ago I had my ovaries and tubes removed. I’m also considering prophylactic breast surgery but at the moment I’m still not 100% sure. Occasionally I think maybe I should just have the screening but I think deep down I know the best thing would be for me to have the surgery. I had a recall recently following a mammogram and I had a terrible week waiting for my appointment.I had convinced myself I had cancer and I hadn’t had the breast surgery in time. Luckily though I was given the all clear but it was a very stressful time. At the moment I’m waiting for another appoinmment to see the plastic surgeon.I have been told that I do not have enough stomach tissue for the DIEP flap procedure which is what I wanted so I will have to have implants.The surgeon is going to try and arrange for me to speak to/see ladies who have had implants which I think will be very helpful.
My sister who also has the gene is 43. She is not opting for surgery and is happy just to have screening.Her circumstances are however different to mine. I have 2 children aged 14 and 11 and my husband had had a vasectomy so it wasn’t too difficult to decide to have my ovaries removed. She doesn’t have children despite a few attempts at IVF so it would be so final having her ovaries removed.I think in time she may change her mind because the screening for ovarian cancer isn’t really very effective.
It’s not easy deciding what to do and no doubt you will have many sleepless nights as I have ( and still do) but you just have to do what you think is right for you.
Best wishes x

I was diagnosed as BRCA 2 in October this year after being treated for breast cancer. I’m 42 and have 3 children so have opted to have my ovaries removed and have another mx (had first mx as part of my treatment for BC.
I saw a genetic doc last week and a gynae onc. They both recommended I had my ovaries removed first. His exact words were “I strongly recommend this surgery”. He had been in charge of a trial screening programme for ovarian cancer and told me it wasn’t effective. He also said that ovarian cancer is very hard to treat and the outcome was nearly always negative. As I’ve had my children, this was not a hard decision for me.
I’m also going to have another mx, even though like others I’m not 100% sure, but I don’t want to go through what I have been through this year again.
I too have sleepless nights worrying about it but feel preventitive surgery is the only way my fears will be eased.

I had the letter saying I’m BRCA1 a couple of weeks ago. I was dx with bc in July last year and had lumpectomy, followed by chemo and am waiting for rads. I haven’t seen the consultant yet but will probably have mx and a hysterectomy.

BC was SO terrifying that despite not wanting a mx or a hysterectomy, I’ll do what I can to prevent any recurrance.

Now, my daughter and my neices have to be tested. I’m devastated they may be affected but also glad it was me that had cancer instead of them. Hopefully they can avoid it with prevention to save them going through the trauma and life threatening risk of cancer.

Jo

hi jo

sorry to hear you have the gene too…

you look very young in your picture so i would have thought your kids were under 18… if they are they wont test until they over 18 as they have to be adults to opt to be tested… my daughter is almost 20 and although i have had BC twice and carry the BRCA2 gene she still isnt interested in getting tested at the moment and indeed she may never be… some people just dont want to know, but they should have the opportunity to discuss it all with their geneticist.

although iv had BC twice my consultant isnt so worried about a recurrence of either of the tumours but feels i have a much higher chance of getting another new primary in the future and is sure the treatment i have had so far should should reduce my risk of recurrence significantly for about 5 years from initial treatment

Lulu x

can i ask if you ladies are triple neg or hormone pos bc x

fairy queen

i have had one of each… grade 1 hormone positive tumour in 2006 and grade 3 TN BC in 2009.

Lxx

hello honeysuckle.

i am like you - i am 35 and also considering the surgery but unlike most peeps i am thinking of not having it. my family and friends think i’m mad but also tell me ‘its my choice’ - but at the same time they say i should have it!

i know you posted this last year - have you decided what to do yet? how did you decide? did you just know? i just cant bear the thought of having my boobs removed.

my hubby is finding it hard too and says what ever he says or does is the wrong thing - i know i am taking it out on him but tell myself well thats what he’s there for!

anyway just wondering how you feel now that you’v e had time to think about it??

Hi Lulu,

Don’t know how I missed your Feb post!

My daughter is 25 (thanks for the compliment!). My geneticist is going to arrange for her to have annual MRIs once she’s 30. I’m going to arrange and pay for a private MRI soonish. We don’t live near each other but next time we’re together, I want to sit down with her and talk to her in depth about it. She’s currently in denial, which is understandable, but doesn’t stop ME worrying!

I’m seeing the plastic breast nurse re my options in a couple of weeks. I’m currently leaning towards TRAM flap reconstruction. A friend who also has BRCA1 has recently had a hysterectomy and has had an amazingly quick recovery so I’m not as worried about that as I was. The breast surgery IS very intimidating though. But worth it to avoid new primaries. I’m not even a week post rads yet though so that is 6 months away.

Then theres just the concern about recurrance of the previous!

JO XX

Hi Jo

wow i would never have thought your daugheter was 25!

my daughter is the same as yours she is 20 and not interested in getting tested yet… but still young so have time on their side… even with a gene its still pretty uncommon to get BC in your 20s.

my daughter is needle phobic so much so this is he main reason not to be tested but in time she may change her mind… but it is her decision to make no matter how much i want to protect her… my daughter isnt in denial as much as just not that interested in anything to do with cancer cos she is just kinda wrapped up in her own world.

when you say your going to arrange private MRI is that for your daughter? you would normally be entitled to them yourself as per the NICE guidelines if your under 50 (you look about 30 so i have no idea really) MRIs arent as effective over 50 as mammo unless you have dense breasts.

i was leaning towards tram last year but was told i didnt have enough of a tummy so decided against it had a look at some scars and scared myself shitless and thought prob better off not to go for it… then was think implants although PS was trying to persuade me to LD… anyway was at young womens forum in GLW at weekend and a PS there said tram flap was the rolls royce of recon and had some really impressive pictures… he also had a look at my tummy and said i was borderline but thought i could get away with it but if i was keen on it to eat a few more pies LOL.

still not sure what im gonna do.

Lulu xxx