Is there an expert out there who might be able to help me?

1 minute read time.

PRIMARY PERITONEAL CANCER I would love to hear from an expert who understands this rare cancer.  I was diagnosed six weeks ago with terminal cancer of the omentum poorly differentiated and assumed to have been generated by a primary breast cancer I had exactly a year ago, but following further investigation of the biopsy, which I am told was sent "all over the place" I have now had a confirmation that it is instead a Primary Peritoneal Cancer.  It is, I am told, still terminal and particularly as it looks like I am not a candidate for debulking, although there is someone in Preston who might be persuaded to have a go - but nevertheless I am much happier than I was as previously I had been told max life expectancy was six months with least time being four weeks, whereas now, if if if the new chemo works - Paclitaxel combined with three weekly Carboplatin - had my first combined infusion today - I might have a year?   Does that sound feasible?   It feels rather lonely having a rare cancer, so is it really that rare?  No-one has talked about trials to me do they exist?   Although I would rather not have a placebo if that is what a trial involves as I have a lot I would like to get done before I die, and would rather not forfeit that time.   My husband is being heroic and incredibly supportive but he is suffering more.  As others who have been told it is terminal may know you are given a strange inner strength to cope with it and it is much much worse for the closer other family members. 

Twicebitten

Anonymous
  • FormerMember
    FormerMember

    I'm sorry to hear about your diagnosis. Please contact the Christie in Manchester or Basingstoke and North Hampshire Hospital. Both have specialist centres for treating and researching peritoneal surface malignancies. I can't say if they can help but I would want to know that they'd seen my file. Good luck.

  • FormerMember
    FormerMember

    Diziet Sma many thanks for this.  I had wanted Christies to be involved earlier (closer to where I live) so was a bit disconcerted when only Preston was mentioned. I would not want to unduly upset my oncologist but is it ok for a patient to just contact Christies direct, obviously I would want the oncologist involved.  But your reply above is very much appreciated. 

  • FormerMember
    FormerMember

    I don't really know the procedure as my partner's oncologist referred him. If you use Facebook, look for a group called PMP appendix cancer support group. There are lots of Christie's and Basingstoke patients there who can advise. Personally however, I would just ask your oncologist. If they're upset that you want a second opinion, to which you are entitled, that's for them to deal with. They ought to facilitate this for you.

  • FormerMember
    FormerMember

    Yes I am sure you are right and that is the course of action I will take, i.e. via my oncologist. You have seeded more hope again, hurrah!  Thank you.

  • FormerMember
    FormerMember

    I wish you all the very best.

    I should be clear that I have no experience with PPC as my partner has a different form of peritoneal disease, but I think there would be nothing to be lost by asking if you can be referred for a consultation at least.