Ipmn and Carcinoid

FormerMember
FormerMember
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Morning all!

My wife has been unwell a lot in recent years going through 8 years of tests and surgeries having a hysterectomy at 28 and then having exploratory surgery a year after it as it didn't help her issues to be told they found Endometriosis. Since September my wife started having a lot of pain on her right side, she started vomiting and feeling really nauseous , feeling really lethargic and her blood tests coming back that she was deficient in almost all vitamins and that she had lost loads of weight. My wife has also been flushing for years but we always put it down to her hormones etc but more recently she is extremely itchy does anyone else have this?  Her doctor that is a gastrentologist  told us on Friday that she has IPMN in her pancreas and that they done a carcinoid test and it came back negative but her gynaecologist also done a test (this is the doctor we love as he takes time to sit with my wife and he done the hysterectomy and found the endometriosis etc) and it came back positive 

in the first test that was negative we are pretty certain she would have been taking paracetamol and we know the test can be skewed due to that however on the second one we know she definitely wasn't taking that would affect the outcome. 

has this ever happened to anyone? 

the gastro doctor says he doesn't think she has carcinoid however is taking her case to the MDT meeting as he believes she needs surgery to remove the IPMN but has asked her to do the urine test for carcinoid big HOWEVER the gynaecologist (doctor we love) has said he has no doubt that she has it that all her symptoms fit it and nothing else. 

looking for some advice etc. 

thanks in advance 

Ronnie

  • Hi Ronnie

    First of all, I am sorry your wife is unwell. It's difficult too when you have two medics who are not saying the same thing - or don't seem to be! I certainly don't have any medical training so couldn't give advice.

    However, the main decision making and planning for the future will be through the MDT meeting and no doubt the gynaecologist will have made a report or will be there.

    Waiting is difficult but my advice would be to wait until you get feedback from that. There is usually a plan put in place quickly after an MDT meeting.

    Let us know how you get on.

    Squeaky