Genetic testing

Hi,I'm new here, and just wanted to know if anybody else has asked for, or been offered genetic testing? I had breast cancer 7 years ago, and have just been diagnosed with ovarian cancer. My mum had breast cancer too, and now I'm worried for my 3 daughters in case I have the dreaded BRca genes. I was told that I would be offered the test if my cancer comes back after my first line treatment and surgery, but I asked to have it anyway, and am waiting to hear from the genetics team.

Would be very interested to hear from any body else affected,

Cheers, Penny

25 Replies

  • Hi welcome to the group sorry it's under the circumstances, I am in the middle of genetic testing as there is a lot of cancer in my family I also have ovarian cancer and my mother had breast cancer and my dad his mother and sister had bowel cancer plus his other sister had ovarian cancer.. I too am extremely worried for my daughter and son I should find out if I have the gene by the end of August I have been tested for the brac1 and brac2 gene they look at the family history to decide whether to test if I have it then they will test my son and daughter I hope this helps a bit...take care Janice x

  • Hi Penny

    I had the BRCA test, like you I had BC (dx 2011) and OC (dx 2012) paternal aunt had BC and maternal cousin 1x removed had OC. It's a fairly easy process, you see a genetic counselor who will explain the whole process, answer any questions and if you decide to go ahead take a blood sample for testing.

    I did have to push for the test, I just kept reminding them that I wanted it done, not just for me but for my siblings and wider family. As they say 'prevention is better than cure!' so I decided to go ahead and it came back negative.

    If you've any questions, ask away and if we can we'll answer them.


  • Hi Penny . I was offered the BRAC gene test back in 2007 when I was first diagnosed and they went through my family history of cancer. Turns out I have the BRAC2 Gene from my mum's side of the family which ties in with all the deaths in the preceding 5 years up to my own diagnosis. My 22 year old son is currently awaiting results of his test. (I'm dreading the result). My 26 year old daughter wants to complete her family before deciding whether to get tested. I am currently on a trial drug for women with the BRAC gene so i'm glad I am able to participate because I fitted the criteria (if that makes sense!). You will have to be counselled before being given the result but my answer to that was 'well I already have Ovarian Cancer so the result for me personally is immaterial but I needed to know for my children'. I wish you well. Kathy xx

  • I'm waiting for my surgery follow-up appt, but I have asked on several occasions about genetic testing. Like you, Kathy, I don't really need to know for me (I already have OC), but I have two little girls, and I desperately want to know so that they can make informed decisions regarding testing for themselves when they are old enough.

  • Hi Id keep pushing. I honestly dont know why the test isnt more readily offered. I hope you get your test, like you say not for you, although it will open up more trials, but for your daughters. Please keep us updated xx

  • Thank you - I intend to! There's no real history in my family to suggest it is genetic, but even if I had to pay for the screening, I would rather be sure one way or the other. Like you say, not just for my girls, but also if it opens up other treatment possibilities/trials for me too.

    My oncologist has said that the histology will include a cursory review to consider if it might be a genetic-type cancer, and if the possibility of it being genetic is considered to be over 10%, then they will do the full test. I just don't know if that makes sense or not?!

  • Yes it makes sense! I never even thought about the gene just thought our family was having a run of bad luck, lost a maternal aunt in March 2003, her son, my cousin (47) Feb 2004, her oldest daughter, my cousin (54) Feb 2005, my mum March 2006, another cousin from another of my mums sisters (62) April 2006. So you see why I was automatically given the test. They took tissue that apparently had been stored at the hospital where my mum died and it turned out she unknowingly had the BRAC2 gene which Id inherited and it was likely her sister, my aunt had it too and passed it to 2 of her children (a third is clear). I wish Id known earlier Id had my family Id have taken the steps to try and avoid getting OC . Believe it or not I have been offered a double mastectomy but decided againt that until Im 80 then Ill go for the Dolly Parton look lol !

  • I have been offered this testing as apparently it opens up different treatments should I need them in the future. Having it done later this month.

  • Hey!

    I am on a waiting list for the test (I am in Ireland) both myself and my sister were diagnosed within a year of each other in our 40s, she had breast and me OC! Both of our consultants reckons it's more than a coincidence so we are both getting tested. We have 2 younger sisters and sis has 2 daughter and other sis has daughter too so everyone is anxious to know. You can get it done privately here but it's expensive and to be honest I don't mind waiting a short while as if I am positive I will have to consider double mastectomy and let's just say I am not quiet ready to make that decision just yet! We should both be tested by end of year and then the decision making begins!!!!!


  • Hi penny,

    I lost my mum to breast cancer when she was only 50, my mums sister had breast cancer, several of their cousins have had either breast cancer or ovarian cancer over the years. Dec 2014 I found a lump under my arm I was only 41, I went to get it checked and all was fine, thankfully. I was offered genetic testing due to my family history. I accepted and the first step was to get one of my mums cousins who had survived cancer do a DNA test first and then they could check me and my sisters.

    Glad to be getting this sorted it was such a shock that I was diagnosed with ovarian cancer before we got the result, but yes she had BRCA 1 and when tested I had BRCA 1 too. It all seamed to be a bit surreal because we were getting tested to prevent this bloody horrible disease.

    I have two sisters who have since been tested and 1 is BRCA positive and the other has been lucky not to have it. My daughter has been tested and thankfully she doesn't have it either.

    My sister who has BRCA has decided to go ahead with removal of her ovaries and total hysterectomy and then a double mastectomy. She has her first op the 10th Aug. My last chemo is the 12th Aug. I then plan a double mastectomy as soon as I am well enough.

    Her son is the only one left now to get his results, and while this doesn't change much for him if he is positive it can be passed to his children. We are hoping he is negative and then this gene will have come to a stop at our point on the family tree.

    There is no denying it has been a difficult time for all the family but my sister is so proud of me for doing this to potentially have helped her to save her life.

    Please see the testing as a positive thing. If any of your family are BRCA positive, knowing is forearmed. Even if surgery is not something they may consider, testing is every year from the age of 30, so an early detection would be anticipated.

    I understand how you feel and I felt awfully guilty thinking I could have passed this onto my daughter, but she is so glad she had the test done now, and at 19 it has raised so much awareness between her and her friends.

    Try not to worry,

    Sorry to hear about your OC diagnosis, any questions don't hesitate to ask,

    Mandy, xx

  • Hi. I have been diagnosed with ovarian cancer and was asked by the consultsultamt if I wanted to be tested for the BRACA gene. I said that I would think about it, but after discussion with my two daughters (I also have five granddaughters) I have decided to go ahead. As my daughter said, they are making advances all the time in the treatment of this disease and she would rather be ahead of the game.

    Hope this helps.

  • When I had breast cancer in 2006, I was offered genetic testing and didn't do it. I didn't understand the implications. In 2013 I was finally BRCA tested and was negative. Strangely, the very next month I found I had ovarian cancer. Later my oncologist told me there are are other genetic markers that will eventually be approved. Mine might be one of those, I suppose.

    My advice is to get whatever genetic testing is available to you. Take care, Nesie237

  • I am going to ask for the test at then end of my current treatment. There are no cancer histories of relevance in my family but at diagnosis the oncologist sent me for a mammogram as tissue staining from my peritonean biopsy showed a tendency for breast cancer. So shocked with everything at the time I didn't even ask questions. Also since the age of 30 I have had many cysts aspirated, a breast access and tissue removed from my breasts. So hopefully with all this I will be considered.

  • Hi Penny - I was tested this year as my sister died of pancreatic cancer and my maternal mother died of breast cancer ( although that was back in the 50's and unsure of the exact location of the disease). I saw a fantastic consultant at Guy's who explained the whole procedure. It is just a blood test and takes about 3 months for the result.

    Thankfully I was negative - good luck X

  • I'm here because of testing, my aunt had breast cancer and because of her older sister having ovarian cancer she was offered the test, came back positive for brca1. Of the 6 siblings only 1 didn't have it ! The generation below ( my lot) There are 2 of us positive so far i decided to remove everything, was all set for double mastectomy and reconstruction when it was cancelled and offered cancelled appointment for bso, thankfully I did because I'm stage 3c , God only knows what I would be 18 months from now if I'd had the breast op. I thank my lucky stars everyday. My op was supposed to be preventive but here we are , I've no children to pass it on to thankfully, 1 other cousin who has 1 daughter has it and waiting for her bso , another has 3 children and she was negative but her brothers don't want to be tested. 1year ago my aunt had her bso and discovered her ovarian cancer stage 1a, and today I start my first chemo we are both very grateful for the test.

    I hope your negative, so your children don't have to go though any of this , good luck xx

    Diane X

  • Wow! Reading all these posts makes me more determined to get the test. I've just found out a close relative has breast cancer 😕 On that side of my family I have 9 female cousins, so the repercussions could be huge.

    Penny, although I haven't been able to directly answer your questions, thank you for this post!

  • I have my treatment in Cornwall and asked for a referral to the RM. On my initial consultation I was offered the BRCA test, I didn't have to ask for it, it was done while I was having a port flushed. For me results came through in 10 weeks and was negative but I guess the RM have the resources whereas in Cornwall the test is conducted from Exeter. Gio

  • Thanks to all for the replies! I heard from the genetic team, and they were supposed to ring me for a kind of 'interview'.......but they didn't . I'm not giving up though! Good luck everybody xx

  • My daughter gets tested in August as it doesn't come from me but we discovered my mother in law died from ovarian and apparently her mother did too, so crap family genes.

    It's a terrible worry,but they know so much more in this day and age, so, we should all go with the advice to live the best lives we can,

    Best wishes, Carole


  • I am peritoneal carcinomatosis /ovarian cancer. I had the genetic testing.I was diagnosed with negative results for brac 1 and brac 2. It was a overwhelming waiting game for the results.My cancer is rare,so knowing it was negative,and my girls (and sisters)would be oKay. It was a relief to here this would not be passed on because it's rare . You've already gone through breast cancer.My prayers are with you.Stay strong .Be positive.Take care 💙💔

  • Hi Penny I am undergoing genetic testing. The Hereditary Cancer Clinic phoned me and asked if I'd come for genetic testing. I think they do this automatically for women who have ovarian cancer in Vancouver Canada. They are testing me for 14 gene mutations. I will get results in a couple of months. It scares me, but It is important to me because I have a daughter, and I would like her to have the option to get genetic testing as well. Kim

  • Hi Penny, such an interesting post. I've thought about this a lot over the years. I had 2 separate breast cancers in '06 and '07. I was offered testing in '09 but 1) I figured I had gene abnormalities and 2) I didn't want to have a hysterectomy as I wanted another child.

    Events took over and now I know that my sister has a brca2 abnormality and I am undergoing treatment for fallopian and ovarian cancer. I have recently had the genetic test (it's a simple blood test but takes up to 10 weeks for results). The results will affect any future treatment I may require so it seems important to know now.

    I also discovered that people with an ashkenazi Jewish heritage are genetically more likely to have these abnormalities. Apparently it's 1 in 40.

    I'd be very surprised if I didn't have brca 1 or 2 abnormalities but i think it is so much more than that. I really think it's how our bodies fight infection and immunity. My sister has the abnormality and (thank god to date is fine) while I've had 3 different cancers before I'm 50. I'm so grateful my sister is well but I ask myself why she is and I am not. Having failed science o levels etc I still have come to the view that it's how my body fights back that is the problem.

    My current plan is to give blood to as many different immunology trials and gene trials as possible. If it can help our wonderful scientists and researchers understand this awful disease I can help my children and everyone's children and grandchildren. That gives me a little bit of hope for the future.

    Good luck with your decision.

    T. X

  • I was tested as I'm half Jewish (greatly increases the chance of being BRCA+) from my fathers side and we didn't know the family history from that side of the family as there is no one left after the holocaust. Results came back BRCA negative. It's good to know as it will open up treatment options.

  • I was operated from breast cancer but luckily for my daughter, I'm not a BRCA1 nor BRCA2 carrier but wonder whether my husband shouldn't be checked for prostate cancer genes (as his father died of it) because if he has it, he could have passed it (which in women develops into breast cancer) to our daughter.

  • Welcome! There are a number of us on here who've had both breast and ovarian, as you can see. I had BC 2 years before OC but got tested before the OC recurred. My mother also had had BC and two of my cousins. The test was negative for BRCA mutations so I'm none the wiser!

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