Positive for BRCA 1

Hello hooked66

thank you for sharing your story. I too found out this year that I am BRCA1 positive, although I have a clear family history and therefore not the shock that you have experienced. Although I also believed it would be negative because nobody else in the family has it.

I definitely do not feel this is the beginning of the end for me because, although I’m scared, I know options are available and I firmly believe those options will significantly reduce me getting cancer again and therefore prolong my life.The journey for us is going to be challenging, each of us will be different in our experience and it is likely to change us not only physically but mentally. But by utilising support, asking questions and allowing myself to be me, I know I will be annoying people for years to come.

hang in there and please do what is right for you, ask as many questions that you need to. I have also joined a closed group on Facebook in my area that was suggested to me by the genetics counsellor. 

best wishes Rox

Thank you Rox for your reply,  

I have my first follow up appointment on Tuesday with my oncologist after ending chemo in March for ovarian cancer, so I'm sure she will inform me better on what options are open to me.  To have to contend with the prospect of getting BC as well as the return of OC horrify me, plus mammograms which I have yet to have, and possibly on going preventative drugs! Yuk, just when I was feeling 'normal' again too. 

I hope you don't mind me asking, but did you have OC? 

I will see what Tuesday brings before worrying any further.

I wish you all the best in the coming weeks months and years and hope you 'keep well'! 

Sharon  

Hello Sharon

i had BC and therefore different from your experience.  I have been tested (blood test) for OC but it was normal which was a welcome relief and has allowed me breathing space, but I am keen to have the op ASAP to remove them.

This journey is a very scary one, but for me, just admitting I’m scared and being unafraid of showing my emotions are helping. 

I hope Tuesday goes as well as it can for you.

take care

best wishes Rox

Thank you Rox, 

hope the op goes well when the time comes, the surgery isn't bad and recovery quick,  I know a mastectomy is often used as a preventative measure against BC but not sure if that's too drastic, however, I know I'll worry continuously taking preventative drugs and yearly mammograms, I'll weigh these 2 things up when I get more info. 

I think I'll feel more positive once I get the bloods done and hopefully am still cancer free  

best wishes xxx

Hi Sharon, I am so sorry you have OC and I hope your treatment goes well.  The good thing about brca1 is that it will respond well to chemotherapy.

I am also brca1.  No family history whasoever because it came down the male line and men are not often affected by brca1.  You are fortunate to be tested early, I had two breast cancers before testing.  The subsequent removal of my ovaries showed a fallopian tube hg serous tumour so am now back on Carboplatin.  

I took tamoxifen after chemotherapy for 5 years for the first cancer and had no recurrence for 23 years.  But the next one was something called triple negative breast cancer, which is often associated with the brca1 gene mutation.  

This is a big decision you have to make and I do not know how old you are and if you have a family.  I was 63 when I got the second cancer and opted straight away for mastectomy.  I had a brilliant surgeon who removed my breasts with minimal scarring and no lumpy bits.  Consequently I have decided to live ‘flat’ and now feel really comfortable and confident with my decision.  I actually really like not having to wear a bra as I am quite slim and it used to cut into my rib cage! 

The Fallopian Cancer was a shock but I hope that now everything has gone I have a better change for my future.  Just have to get over the chemotherapy which is tough but you get through it and there are many people living well after it.

Get help from your hospital nurse, macmillan and your genetic counsellor and you will make the right decision for yourself.  We are all individual and you will know what you are most happy with.

wishing you strength, wellness and a good treatment, Sue x

Thank you Sue for your reply and sharing your experience, I had my follow up oncology appointment today, 11 weeks after last chemo, the dr told me that ironically those being BRCA 1 positive do better than those who aren't, in way of responding to treatment and reoccurrences so that's a bit reassuring. 

Im not sure what side of the family it came from, no history except a prostrate cancer which was my mums brother. Mum feels guilty as she thinks perhaps it's her who has passed it on so I explained that it's no ones fault, just one of these things. Can't tell my dad as he took the initial diagnosis badly. 

Im goi g to speak to the genetic consultant about what's on the agenda next, I know an appointment is in the pipeline for a mammogram, will decide what route to do down then.

I hope your treatment goes well, it's such a roller coaster of emotions isn't it and a lot to take in!  The carbo treatment isn't too bad, not as bad as I was expecting anyway, the taxol I got along with it cause a few small issues but all in all I was surprised at how easy it was on me, hope it's as kind to you.  

Best wishes Sharon xx

My oncologist would second that opinion.  I went to an Ovacome meeting on Saturday in London.  One of the speakers from the Royal Marsden was saying exactly that the brca1 tool kit is much better researched and hence the better outcomes.  

You sound as though you are dealing with everything very well so far.  I am surprised how quickly I bounce back after each infusion but it’s the emotional side which creeps up occasionally.  I know once I am busy with work and other stuff that will fade as time goes on.  

I hope the meeting with your GC is enlightening and helps you to make a decision.  I wish you well,

Sue

xx