Recurrence of pmp after nearly 5 years

After latest blood test my CEA levels have reached 5.1.  I had a CT scan which revealed a small nodule in peritoneum. The consensus is that it’s a recurrence of PMP.I’m having colonoscopy on Wednesday. Has anyone else had a recurrence?

  • So sorry to hear this. 

    im newly diagnosed so can’t help you with this one. Hopefully things will turn out ok for you. What treatment did you receive when you were diagnosed 5 years ago? 

    have you been on the pseudomyxoma peritoniei Survivors website? You may get people on there who could answer your question xx 

  • Hi Louise I had the big op (9hrs) at Basingstoke. Removed spleen gall bladder total hysterectomy including ovaries and right side of large bowel.this followed by the HIPEC ( hot chemo drugs) spent 3 weeks there it was good to get home. Had to have 6mths chemo.Took me about a year to get  back to some sort of normal.if you are going to have the op don’t worry you’ll get the best treatment whether it be Basingstoke or the Christie they really know and understand this cancer. I wish you good luck and remember the survival rates for this cancer are very good. xx

  • Hi, 

    I’ve been referred to the Christie. Bit worried about the surgery to be honest. How did you find it? Xx 

  • To be honest I scared but who wouldn’t be it is a massive operation. Don’t remember anything from a few days after as I was on a morphine drip. I was just relieved that I didn’t have a stoma because they managed to join me up. Just remember the surgeons at the Christie are some of the best in the world for this operation and the nursing staff are just amazing. Not sure how old you are but I was 69 when I had my op! Friends a family can be a great support just take things slowly and you’ll be fine I will keep in touch I’ve had a good four years the first year was a bit crap and I still feel good even though I might have a recurrence but I’ll deal with when I know. So Louise take care and trust the doctors/ surgeons they really do know what they’re doing xxxx

  • Hi Maggie, 

    Your positive attitude is inspiring! Purple heart.

    you’re right, who wouldn’t be scared?! You can’t remember a few days post op? I think it’s that loss of control that worries me too. 

    I’ve just turned 38. 

    so sorry to hear you may have a reoccurrence. Hopefully you will get some answers soon, and recover as you did last time xxx 

  • Hi Louise I didn’t remember first few days after of because I was sedated and they woke me up slowly plus the morphine really knocked me out. Don’t be too worried about not being in control ( I’m presuming you mean your bowels) it will be difficult at first but you’ll probably have a Macmillan nurse who will help and advise you. It helps if you have a downstairs loo too .dont be afraid to ask questions especially to the nurses because they are really helpful and kind. Hope you get to see a doctor at the hospital soon waiting doesn’t do anybody any good. So head up a big smile and a determination that you will get through this. xx

  • Hi Maggie,

    I mean loss of control as In on morphine and not remembering a few days :-( 

    Hopefully my appointment won’t be too long. Hope you manage to get sorted too. You know where I am if you want to send me  private message xx