Forum Discussion

Mares's avatar
Mares
Member
11 years ago

Genetic testing

Hello. Hope you are all having a good day. I'm off to see a geneticist at the Royal Brisbane Womens Hospital on Monday. I may not have to have a genetic test, it depends on my interview. I have 3 aunties who had breast cancer, that is why I am of to the RBWH. I am wondering if any of you have got this far and what questions I should ask or follow up treatments I should request. Thanks. Mary

7 Replies

  • Tracy62's avatar
    Tracy62
    Member
    11 years ago

    Hi Mares - I'm a little bit behind you in this journey. I have my appointment for genetic testing this coming Monday at Royal Brisbane too. Will definitely be getting testing done - no history of breast cancer in my known family (Dad was adopted and we have no medical history from his side) but I have had 3 different unrelated cancers myself and there are a lot of one off cancers in my Mum's side of the family so 3 of my specialists thought it was a good idea for me to look at getting it done as there may be a mutant gene that makes me/us more likely to get cancer. Hoping all is going well for you this far along and also for the others who posted comments/replies. I am glad I got to read this before my own appointment. Thank you all. xxx

  • Hazel_M's avatar
    Hazel_M
    Member
    11 years ago

    Hi, I had genetic testing late last year, my sister, mother, grandmother and 3 aunts all had breast cancer, so I was lucky No.7:( I am not BRCA 1 or 2 positive, however, they did find a variant in the BRCA 2 gene, which I was told could be good or bad. The problem is, there has not been enough research done to identify this variant. I was told that down the track, who knows? there could be a BRCA 3,4 or 5. I will contact them in a couple of years to see if they have made progress with the research. They just don't know enough. They will give you the options when you have your appointment. All the best,

    Hazel xx

  • Louise_Macgrego's avatar
    Louise_Macgrego
    Member
    11 years ago
    Hi Ro, I'm sorry everything was so rushed for you, it's very hard to have make quick decisions, but I hope it's all working out for you. I would insist on the testing personally, I think you can never have too much information. Hopefully it will come back negative, but if not you could opt to have your ovaries removed and then talk to your surgeon about your other options. I can't emphasise enough how important it is to have good surgeons around you helping you make good informed decisions. I'm not sure where you live, I live in Brisbane so my surgeons are Dr Jenny Gough breast surgeon and Dr Eddie Cheng plastic surgeon, both at the Wesley, and they are absolutely fantastic, I would thoroughly recommend them. You could always seek another opinion if you're not happy with your current surgeons. I hope all goes well for you, let me know if I can help in any way xx
  • ro_obrien's avatar
    ro_obrien
    Member
    11 years ago
    Hi Louise. I was glad to here you persisted in your genetic testing and were able to make an informed decision to have your surgery. I am a little worried now that I allowed my breast surgeon to talk me out of having genetic testing. I had one fraternal aunt with breast cancer and my mother's fraternal twin died of ovarian cancer at 64. I have since found out that another fraternal aunt had breast cancer. I will be seeing my surgeon next week and will persist with testing. Only regret it will be too late as I had an unilateral DIEP in February 2015. I had a high grade DCIS and 2 prior wide excisions before having the mastectomy. The surgeon was insistent that I should have the mastectomy ASAP and I had little time to decide on a double masrtectomy. I do realise that I could have had a mastectomy and immediate reconstruction on the unaffected breast but my DIEP was organised 5 weeks after my mastectomy and because my expander was extremely uncomfortable and enlarged with a seroma I had the DIEP as soon as I could and was extremely happy with the result. My only fear now is that I may test positive tp BRCA gene. My girlfriend went to an Ovarian week afternoon tea and told me a guest speaker said that any one with a family history of ovarian ca ( even secondary relatives ) should be tested for the gene. But thank you for your input. The only positive for me at this stage was that the histology from my mastectomy was that my breast tissue was normal. Ro xx '
  • Louise_Macgrego's avatar
    Louise_Macgrego
    Member
    11 years ago

    Hi again, I had a hysterectomy in 2001 but still had my ovaries. Because breast cancer loves oestrogen, they recommended I have my ovaries removed to lower the risk of breast cancer returning, and I was approaching menopause anyway. When I tested positive to BRCA2, they told me it has a strong link to ovarian cancer so I was glad they were gone. I'm so glad if I've helped in any way and am happy to talk further if you need to. I think every single person on this website is brave, including you, and I am just one of many trying to make the best decisions for our future health. I wish you all the best, all the members have a wealth of knowledge. Good luck. 

  • Mares's avatar
    Mares
    Member
    11 years ago

    Oh thank you Louise, I so value your insights and I am sorry that you had to go through such a journey to be cancer free. You must have great peace of mind now. I hope your recovery goes well. I am at the point of requesting a hysterectomy just to be clear of all possibilities. Why did your surgeon advise you to have surgery on your ovaries other than the connection with breast cancer. Interesting that you chose just to have your ovaries removed. What were your reasons for not having a hyterectomy? I will most defintely ask for the test now that I have read your post. Thanks so much. You are a brave strong womanxxx

  • Louise_Macgrego's avatar
    Louise_Macgrego
    Member
    11 years ago

    Hi Mary, after having a DCIS in December 2013 at age 48, I too had genetic testing as another level of screening in October 2014. I had no real family history, my mothers half sister died of breast cancer in her 70's but she was only half related, and my cousin on my father's side died from ovarian cancer, other than that there was nothing else. Like you, I had the genetic counselling and my geneticist thought the chances of me having the gene was fairly unlikely given the family history. In my mind, I wanted to do everything that was within my power to try to prevent the cancer returning so I had the test. Surprisingly, I actually tested positive to the BRCA2 gene. My breast surgeon, Dr Jenny Gough at the Wesley in Brisbane, had already advised me to have my ovaries removed in April 2014, and now with the positive BRCA2 test, she felt that a bilateral mastectomy with TRAM flap reconstruction would be the best option for me. She left it up to me, but I took her advice and she referred me on to Dr Eddie Cheng, my plastic surgeon also at the Wesley. In fact, as I write to you, I am sitting in my hospital chair, one week post op and doing very well. My pathology from my removed breasts came back with atypical change in both breasts which, if left  unattended, would eventually have turned into cancer, so I am very glad I made the decision I did and now I can hopefully look forward to a long life breast cancer free. Ultimately, the decision to have the test is yours, but from my own personal experience, it was well worth it, even if there's only a hint of cancer in your family. I wish you all the very best, please feel free to contact me should you ever need to. Kind regards, Louise