Feelings of being positive with BRCA 1

Hi there.

Like with so many of us, either we are watching someone we love live with cancer, fighting it, to have already experienced loss.

In past the 2 years, I have lost my uncle and my step-father - although unrelated cancer in terms of the brca gene, my sister after fighting bc last year, has now be diagnosed with secondary bc. This is something I can not get my head around and struggling to except, she is 34. But the ‘C’ word seems to be a common thing in our family.

The bc is genetic in our family therefore didn’t take long for my result to also be positive, I’m 32.

I don’t honestly know the best options for me now - but have a new found fear, which I thought wouldn’t be possible after my sister’s diagnosis.

I’m looking for a support group or something for people in similar situations, i’m in the Dorset area. Would be great to hear if anyone has experienced this, and what decisions/testing they had.

Sarah
x

I have just been diagnosed with the BRCA 2 gene. I was scared at first but then i made the decision to see my kids grow up they are only 12 and 8. So i decided on having a double masectomy with reconstruction. I have a 84% chance of getting it before i turn 50 and i am only 40. My maternal grandmother, great grandmother and mother all have died for this. I hope we can talk some more. Its nice to talk to people who are going throught the same thing.

Hi there, I have posted for you below the link to BCC’s publication regarding breast cancer in families, I hope you find it useful.

You’ve come to the right place for support, the users of this site have a wealth of information between them and are only too willing to share their knowledge. Don’t be afraid to ask anything, there’s always someone around to help.

Link to publications:

breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/70

Hope this helps. Kind regards,
Jo, Facilitator

I am sorry to hear about your family members passing due to breast cancer. I lost my mother to breast cancer as well. I have recently had the genetic brac1 test and I am waiting on the test results. I have had precancer atypical in left breast. I am scard about what to do if i have a positive test. I wish you well and hope the best for you.

Hello

I’m a BRCA1 person. I know you all live in different places but now and again BCC hold a telephone support group - usually an hour a week for 6 weeks. You might want to ask about the next sessions.

I know it’s a distance but the Marsden also have a support group which meets every quarter for a couple of hours. I’d say it is worth looking into - next meeting is October. You can also get yourself referred to their clinic by your GP and you will get checked by the experts there annually; they’re at the leading edge.

Just some thoughts …

Hello there.
Sorry this is a long post!!
I know it must seem scary at the moment, but I am writing to reassure you that being BRCA is something you can live with, and still have a relatively normal life.
I was confirmed as BRCA2 almost 2 years ago. When I was told I thought my life was over - I was so scared. My sister had just died from cancer at 42, and I was 39 - the age she was diagnosed with terminal cancer. I felt history was repeating itself.
With the support of my husband and friends, and some wonderful people at my genetics clinic (I rang my genetics nurse in desperation on more than one occasion) I slowly came to terms with the test result.
I was referred to the breast and gynea consultants at my hospital, and was then on a bit of a rollercoaster of finding out as much info as I could, and making the decisions on what to do.
My first decision was that I wanted to know the worst - as I was under 40 I did not qualify for a free mammogram or MRI (I think this is different now), so I paid to have an MRI done(they are far better at scanning younger dense breast tissue than mammograms) to see if I had cancer already. Luckily I didnt.
Then I spent the next few months coming to terms with the fact that as I was a worrier the best thing was to reduce my risk as much as possible. This meant preventative surgery. For a hospital-phobic this was a big decision. I had to have hypnosis to get me there!
A year after finding out I was BRCA I had my breasts removed, and reconstructed, and my ovaries out, all in one operation.
It has been a long recovery - both mentally and physically. I have been put into an early menopause with the problems that brings - sweats, memory seems to be rubbish, change in body shape, tests for osteoporosis and heart disease to name but a few.

The thing I have realised with being BRCA is that no two person’s experiences are the same. Physically we react differently to the operations, and mentally our “baggage” and needs are different.
Amazingly I knew straight away that I had done the right thing for me - my relief at losing my time-bomb breasts was quite real. But not everyone goes through this. Having breast surgery can have lasting problems - I have had 2 “tidy-up” operations since (quite willingly!!); but I know of people who arent satisfied with the results of their surgery and regret having it done. It may change your body image and sexual relationships.

I dont have the life I had before - I am vigilant, I read anything I notice about breast and ovarian cancer - it is still a big part of my life - but I have amazed myself with my strength to go through surgery, and have found lots of companionship with other BRCA people - my closest peer I met through the BCC phone-support group.

I wont tell you what to do, but I will give answers to any questions you have if I can. But please can I offer one piece of advise - be persistant with your medical practitioners - I (and my peers) have found that no-one cares as much about your health as you do - if you are a passive, quiet patient - you may find time drags and you dont get help/treatment when you need it. My gynea consultant had a massive waiting list - but at just under 40, and having had no kids, I knew that it was imperative I had my ovaries removed asap - I had to persist to get seen - and that took nearly 6 months!
sorry this is so long.
take care
Jane

Hi Jane
What a brilliant comment you have posted, it made me realise that what I am feeling is normal! I was told that I was BRCA 2 at Xmas 08 and was devastated at the time (still am a bit really if I’m honest) I thought that I was doing okay following Bc/mastectomy/reconstruction in 06 and removal of ovaries in 07 plus other minor ops but then this happened.
My surgeon said “you have opened Pandora’s box”, it doesn’t sound too bad put like that but its the thought of more surgery, coward as I am.
I admire you for going through with the surgery, I can’t quite get there as yet but know that it is a far more sensible/life saving option for me.I wish you well, its good that we can share our experiences, thankyou
Shopaholic x

Hello everyone

Can I ask how long people usually have to wait for genetic test results? I have just finished radiotherapy for breast cancer (I’m 38) and due to my family history, I’ve asked my oncologist to refer me to a geneticist. I’m so worried that I have the faulty gene, that I don’t think I can relax until I know for definite one way or another. Is it just a blood test that is done? And how long thereafter is it usual to have to wait.

I’ve been referred to someone in Glasgow,possibly at Yorkhill. Does anyone have any experience of the clinic there?

Thanks so much, and good luck to all of you.

Shenagh xx

Hello Shenagh…

I was dx Nov 08 had neo-adjuvant chemo.My dad passed away with BC and my mother also has this disease.Basically,crap family history on fathers side.I was referred to Mark Longmuir at Yorkhill…very good.Its just a blood test they do and look at your family tree.Blood test results came back about 8-10 weeks later and confirmed I had BRCA2.Had bilateral mx at GRI with tissue expanders then five weeks rads.
Had appointment to go and get ovaries out this week but down with a chest infection.
Sometimes its alot to take in but you get there.
Hope all goes well for u.
Let me know how u get on
Pauline
xxxxx

Pauline, thank you so much for your reply. I’m sorry your surgery was unable to go ahead this week due to your infection. I hope they can schedule you in soon cos I’m sure it’s preying on your mind. I am trying to just prepare myself with loads of information before I go for my first appointment so I kinda know what to expect.

Thanks again, and take care. Let us know how you get on : )

shenagh xx