Hello from the USA!

I am curious if any of you have been genetically tested for the braca gene and have come back positive for braca1 as I have. Have you spoken to your onc about the pros and cons of being positive? I was never told that ppc was a good possibility for me to get due to this gene like breast and ovarian cancers. I wish I had known this before I got stage 3 ppc. I could have gotten diagnosed sooner instead of arguing with my primary doctor who kept telling me I had gas instead of my abdomen filled with 5 liters of fluid and too many to count tumors. Wretched doctors who don't know much of anything except passing the buck or ignoring you completely. The bad news about this cancer is that I'm prone to getting it due to braca gene, however, due to the braca gene the tumors are extra sensitive to the chemo and killed all of it. I guess that's why my whole life I felt the need to be even.

22 Replies

  • I don't know why those boxes say head and neck and brain tumors for my post. I don't have these, thank goodness I have enough to worry about.

  • I'm just about to begin the genetic testing process. My meeting with the genetics team is on 15 September, which is just after I finish chemo. There's no real history of it in my family, but the fact that I have high grade serous at the age of 38 makes me a bit more interesting. I have two little girls, so I want to know one way or the other for their sakes.

  • Hi there ..

    And welcome.

    It's not generally known that Ovarian and peritoneal tissue have the same embryonic origin.

    As you're BRAC positive, you may get the chance of the PARP inhibitor, Olaparib, at some point.

    Sending love and hugs.

  • Hi, Im Brac2 and currently nearly 3 years on Olaparib. Ive had Oc for 9 years. I was genetically tested after diagnosis and my son has just tested positive . My daughter has yet to be tested x

  • Is that so? I will google it. I have known I am BRCA1 for many years but I do not recall being told we are extra sensitive to the chemo, so it works better.

    Interesting to say the very least.

  • Yes I thought it was very interesting and hopeful. My oncologist told me this and nonetheless as my ca125 was 25,000 at diagnosis and 4 rounds of taxol and carbo thru IV and ending up with less than 100 totally eradicated the cancer. The rest was removed with my omentum removal. I just wanted to share this news and give hope to those braca1 patients. Live on warriors!

  • I was tested for it and came back negative. I beleive that they now have a new chemo out in the UK for the treatment for BRACA positive people as I was talking to my oncologist about it. He was very excited about the new drug and said it was a break though for these people.

  • Hi there

    I wasn't offered genetic testing and I am guessing it's becsuse

  • My reply went too soon so just going to redo it !

  • Have been tested and I an awaiting the result. I am keen to know for my 3 daughters. Didn't know about the possibility of tumours being extra sensitive, I will mention that when I get my interview.

    Take care

    Penny x

  • Good luck penny!

  • Hi there

    I Am sure you will get many answers similar to yours and mine. I was diagnosed with PPC stage 3c in 2011. There was no talk of gene testing and the only thing they did ask me was if I had relatives past or present who had Cancer. I was able to tell them no and remained in blissful ignorance of gene testing until I joined this site 2 years ago. Up to that it was difficult to find anyone with PPC.

    Similar to you i was told many times that i had either IBS or even anxiety. I had resigned myself to putting up with it and watching my diet . However a bloating tummy and lack of appetite alerted a vigilant locum and she sent a blood test to the Lab.

    Very quickly the whole scary process began . She called me as soon as she got my results and told me to go to the A and E of the nearest hospital. Having spent a whole day having various tests they told me they were admitting me. I cannot remember if I heard the PPC word then but I had 8 litres of fluid drained and a count of over 8000 in my CA125.

    I did not have radical surgery but was quickly started on chemo which was Carboplatin and Taxol every 3weeks for 6 cycles. I started feeling better almost immediately and by the time my chemo ended I was pronounced NED and remained so until this Mar when i was told after scan that my lymph nodes were swollen . I am now having chemo again but as you can see that was quite a long remission. I only learned from this site that high grade Serous PPC is very sensitive to platinum based chemo so it almost always has a good response. I am now on Carboplatin again so i pray that I'm still sensitive to Platinum and that it will act the same this time round.

    I'm sorry for being so longwinded but I just wanted to reassure you that there is always hope . I was actually told to see this as a chronic illness which may or may not flare up again. Of course this site has been invaluable and I wish I had known about it earlier. You will always get an answer to your worries.

    I wish you all the best for your treatment and please keep in touch


  • Hi Molly-

    Could you please tell me where you heard that high grade serous tumors are extra sensitive to carboplatin drugs? I had a very aggressive MMMT, (21 cm) removed TAH, proper gutting, omentum, appendix, lymph nodes, pelvic washing. On 5th round of chemo and any good news would be welcomed.

    I was stage 3b. Genetic testing done, negative for all the markers.

    Your story is an inspiration to me. I hope your second go around knocks it back for good!


  • I hope you get another NED after chemo this time around. Hugs Molly

  • Thank you so much. Will post on my progress as often as I can. Hope all goes well for you


  • Hi Carol

    I think I heard it this year when I saw another oncologist for a second opinion. Up to then I only knew I was stage 3c. I learned a lot after finding the Ovacome website . I had said after I was diagnosed that I did not want to hear my prognosis . I guess he took it from that I didn't want any detail . His CNS just kept telling me I was very lucky which really puzzled me . In Oct I was told I was being discharged from oncology to my huge surprise ! In fact I just said to them that either I was a miracle or I was misdiagnosed in the first place !

    On the subject of tumours Carol I didn't have any large tumours. I had 8 litres of ascites and Cancer cells scattered in my pelvic area. I guess they would just have to remove everything in my pelvis to be sure. When I read your description of your surgery and that of many women I am happy that I did not have to make that choice. I would not be so brave. There is a saying that God only gives you the crosses you can bear ! He must have known I was a bit of a wimp !

    Anyway Carol I hope I have been of some help but that is my understanding of the subject of platinum sensitivity . Someone might well come along and tell me I'm wrong and burst my bubble ! I hope all goes well with you from now on. My next chemo is Mon week. Will keep you posted. Take care


  • Hi Carol

    Just to say that there was more about this that I had forgotten but as I am not an oncologist or in no way involved in the medical profession you need to check this with your own Dr. Carboplatin and Taxol are almost always used for first line treatment. In high grade serous there is usually a good response and there is usually a remission . The important bit is how long you remain NED before recurrence. If it's under 12 months then the possibility is that you have become platinum resistant and they will use another chemo. If it's over 12months then you are probably still platinum sensitive and will respond again . The longer you remain NED the better it is. As I was over 5 years clear then that is why they are using carboplatin again. Of course there are always exceptions to the rule and I hope I wont be one of those ! As you have had all that surgery it could be most of the Cancer has been removed and they are just mopping up any stray cells . I do hope that is the case and I hope what I have written makes sense to you. Again carol just to confirm my lack of a medical degree ! Take care and let us know how you get on.


  • I am being genetically tested. The geneticist mentioned Lynch syndrome and the Brca genes. I have no idea how long it will take, the blood sample was sent off about five weeks ago.

    I was wondering whether 23 and me would get me back an answer more quickly.


  • 5 weeks to wait for results sounds like a pretty long time. I do know braca testing takes quite some time as they have to track genetic strands for any mutations. I don't know about lynch syndrome but I assume that also takes time. Maybe they're waiting for both tests to be completed before giving you results. I think I had to wait about a month for results.

  • Thanks for that. I think I will email the geneticist I spoke to.

    I had to wait nearly two months for a written version of my interview because they had no secretarial staff!


  • That's a good idea, Diane. Keep all of us informed. You have to be your own advocate.

  • Got a reply. Blood testing result due in a few weeks (it takes eight apparently. That will tell about the BRCA genes.

    Tumor Testing due by Christmas - takes six months. That will tell about Lynch syndrome.

    Will update when I hear.


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