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

    Look up HIPEC and see if anyone is doing it in your area. The top centers in the US are Washibgton Hospital in Washington DC (Dr. Sugarbaker) and University of Pittsburg Medical Center (Dr. Bartlett I believe). If HIPEC is not available then two very promising treatments are TPIV200 (Dr. Konnor at Memorial Sloane Kettering Cancer Center) and a Measles virus treatment (Mayo Clinic in Rochester, MN). These are vaccines made from the patient's cancer cells and are the new wave of cancer treatment. Note that primary peritoneal is nearly identical to ovarian cancer. However it also arises from colon cancer metastasis so the biopsy results showing where it originated is important.

  • FormerMember
    FormerMember

    Thanks for this and it is something I will take up with The Christie when I see them as they are THE colorectal and peritoneal experts in this part of the world, and although I am still awaiting the details of my biopsy my oncologist has told me they have definitely now eradicated an ovarian connection, nor is it breast related, so presumably it may well be from the colon.

  • FormerMember
    FormerMember

    HIPEC is only performed in the UK at Basingstoke and the Christie. If you have mets from the colon it's not PPC. Ask about pseudomyxoma peritoneii which almost always originates in the appendix. It's a distinct disease from colon cancer and needs to be treated by an expert.

  • FormerMember
    FormerMember

    Oh dear, but thank you Diziet Sma for your intervention. So that shows you how much I know yet awhile! Am still waiting for the letter which will spell out exactly what they think it is and what it isn't so I am talking a bit in the dark. But anyway I have set the ball rolling for a referral to The Christie for at least an opinion if nothing more. My breast surgeon did talk about the appendix thing at one stage and then that got ruled out I think, but soon I shall be better informed.

  • FormerMember
    FormerMember

    It sounds like getting yourself to the Christie is the main thing. My partner was told initially that he did not have PMP but then was told he did. I hope that you get some answers soon and the Christie is a good place to look for them. Let us know how you get on. DS x