Hello ladies

Well I knew it was all going too well..then this morning the letter turned up telling me I am BRCA 1, bit of a shock as I had convinced myself I wasn't BRCA anything. Sniffly phone call to Ruth at Ovacome and the nice lady at Addenbrookes genetics clinic but still taking it in.

As always ...if you can share anything that makes this feel less like another body blow after the stage 4 diagnosis and first line chemo plus debulk I would be very grateful.....😓

20 Replies

  • Hi Lyndy. I was diagnosed BRCA2 in 2007, to be honest I didnt find it a shock or distressing but more of an answer as to why I and so many other close members had had Cancer. What I do know is that the trial I am on is for those with the BRAC gene so as the cells respond better so I see that as a benefit..... probably an odd thing to say but thats how I feel. My one concern is not for me but my children/grandchildren. Im praying I havent passed it on as Im not sure how I will deal with the guilt even though it was out of my hands and then part of me is grateful that they can get tested so that they can look at options. I wish you well. Kathy xx

  • Hi Lyndy I am Luk4ward's husband. I had my wife tested for BRCA and it turned out that she was not. I did this because if she was BRCA it would open up more biological treatments as more options as well as the chemotherapy. My understanding is that if you are BRCA you may be more susceptible to breast cancer but you have more treatment options on the table during your cancer journey. I am open to correction if this is wrong. Stage 4! I can only imagine the impact on that news but you have more stage 4 survivors these days than ever before. Be as strong as you can be and there is always options.

  • Thanks you guys..xx

  • Hi Lyndy, it depends a bit on your age, I guess, but as already mentioned, it does have its pros. I was tested negative, and my oncologist pointed out that there are more treatment options, if you are positive. It turns out that I have a BRCA-like cancer, so some treatments may work. Good luck xxx

  • Thanks Foss54 I think I had immediately focussed on the worst aspects of this news. As I am currently well after first line I had allowed myself to hope thatI might have a chance of no recurrence. This was wishful thinking anyway but the BRCA1 means that it will be back. However as people have said poss more treatment options. Feel a bit more in balance today...following a brush with the old terror yesterday. Lyndall xx

  • Hi Lyndy, so sorry that you have had the news you didn't want to hear. I have just had my counselling and blood test to be tested for the Braca genes and am awaiting the result. Having five granddaughters and numerous nieces and six grandsons and (almost ) 2 great grandsonsand also nephews, I sooooo hope I am negative. However, I have been told that if I AM positive, there is far better treatment to be had for me. Also, against that, I have been told that all these family members may be at risk, but at least they would receive a lot of help and extra monitoring if they choose to be checked, should I prove I carry the Braca 1 and Braca 2 gene, and be able to make surgical choices once they have had their families. I still hope I am negative though.

    Even worse, whilst having the counselling, my husband asked why one of the questions asked was whether there was Jewish blood in the family, as he thought there might be, on his Mother's side. The answer was there is another gene that tends to prevalent in Jewish families.

    His mother had breast cancer in her late forties and and, checking with his girl cousin, knowing she had it five years ago, she has confirmed that there is Jewish blood on their paternal grandfather's side - so now we are waiting for counselling and testing for my husband!!

    Better treatment for me or not, I desperately hope that neither my husband or I carry the Braca genes. I think it is only the Braca 2 gene that passes down through the male side of the family, too, not just causing breast or ovarian cancer but also various other ones, including postrate amongst a few others.

    So, the one thing I hope to cheer you up with, Lyndy, is that hopefully, there is a better treatment for you, should you eventually need it.

    Try to keep smiling, love and a big hug, Solange 😊

  • " even worse " ...Jewish ? What do you mean ?

  • Hi Angela, when I said " even worse", with reference to there being Jewish blood in the family, I was referring to the fact that the Counsellor had said there was an added complication, a gene that can be prevelant in Jewish people. I hope you don't think I have anything against Jews - I don't. I meant worse because it's bad enough worrying about my children and grandchildren, should I prove to have either of the Braca genes, without also having the worry that my husband may carry the gene, meaning that we could both pass it on. 😟 Solange xx

  • Yes , of course ! Thank youation ....I now see your point and it is all dreadfully upsetting .

    I have had aunts and cousins with cancer , all Jewish Ashkenazi, but no brca gene maternal grandmother died of a stroke , and possibly OC , but no records own mother is 95 and nothing wrong with her , ever . Ho hum !

    My best wishes / sorry for any misunderstandings x

  • Hello again, Angela. Must just clarify that the Counsellor was only talking about an OvCa gene with regard to Jewish blood. Not sure about other cancers. Have never heard of Ashkenazi Jews - something else for Googling. 😉

    How marvellous that your Mum is well and 95!! Let's hope that some of whatever keeps her going is also in your blood so you can give this horrible Ov Ca a good fight. 😊 Xx

  • Yup , a good kicking ! After five years of this , five lots of chemo regimes , start immunotherapy in July , perhaps .Be jolly each day , my motto 😉

  • Hi Angela, just to ensure you understand that I'm sure Solange meant no offence, I would add that long before I knew anything about OC, I was aware through science programmes/reading that those with Ashkenazi Jewish heritage are at much higher risk than the general population of carrying the Brca gene. I am fairly sure ( but not positive), that having the heritage allows for genetic testing, even in the absence of immediate family history.

  • That's very kind of you and I do understand .

    I was genetically tested in 2011 when diagnosed , and although my family were Ashkenazi we have not turned up a BRCA gene . So , we have cancer in the family but that's the way it is .

    Very best wishes .

  • Best wishes to you too. My mum has just discovered she is not BRCA, and she is pleased for us, but at the same time we are a little disappointed because it was clear her consultant was planning the next step on the basis that she was positive. Life - it's a funny thing a times ! X

  • Hi Solange-do you mind if I ask whether you are clear cell ?

  • Hi Howick, no, I'm not clear cell. I am both high and low grade serous Ov Ca.

    Solange xx

  • Hi Lyndy, Sorry it isn't the news you wanted, but take heart in that there are further treatment options available if needed.

    My CNS sent me a Macmillan booklet about BRCA because I wanted to know if I could be tested for the gene after treatment is over. In the meantime I've been doing some digging. My eldest sister who is twenty years my senior assures me that was no cancer on my mothers side. I don't know much about my father other than he died aged 92 two years ago. I tracked down one of his sons on FB - my half brother who was delighted to hear from me (he knew about me already) and he tells me there is no cancer on their side either. In fact all of his aunts, like mine lived very long lives.. Still I suppose my mums generation (she would have been 100 yrs old this year) went undiagnosed as cancer wasn't as 'out there' as it is now. It was 'womens problems' or 'dicky bowels' whispered about over a garden wall..

    I would still like the test though because this disease is an absolute mystery to me. I'm stage 4 too. Doing chemo number 5 on Weds - debulked five weeks ago. xx

  • Apologies - I got distracted by the sub thread, and didn't reply to your main thread. As ever, it is a 'swings and roundabouts'. My mum has just found out she does not have the gene. I know she didn't want to have it due to the implications for the rest of us, but I also know that finding out for sure means another treatment door has just closed to her. She is a bit shell shocked as being stage 3/4 without the gene leaves her a little in treatment limbo. I hope you find the support you need to deal with your latest body blow, and soon come back fighting x

  • Well yes it is rubbish in that the gene may be passed on, but at least any off Spring are aware and knowledge is power. Being Brca also opens up Parp inhibitors as a treatment which is good news. My Brca test has gone awol so they want me to do another one, but unfortunately for me I am classed as platinum resistant and therefore part inhibitors won't be effective even if I have the gene. X

  • Hi Lyndy, I'm also (surprisingly) BRCA1. Nearly 10 years on from diagnosis, 3c. As I understand from my oncologist the 'benefits' can include chemo responsiveness (true for me after several lines, recurrences and remissions.) Olaparib seems to be a v effective maintenance drug (though I've no personal experience of this) and I know of a lady in Sutton, stage 4, who after chemo and debulking was given olaparib on a trial and is still here without recurrence 11 years later. All very best of luck, Meryl x

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