Cancer of the Appendix

Hi

My first time on here. My partner has a ruptured appendix and it came back as adanomia endocrine tumour. She's 44. Went to Christie had hipec and surgery, removed two areas on uterus 5 pence peace size that were cancer. She came back have zero grade so no visable signs after surgery, bloods clear. The surgeon report post op said remarkably clear of disease with 2 small fibrous areas of suspision. Both removed. Apparently they were expecting to find more.

 

Just been for post 6 week op consultation and have been told to be optimistic??? My partner feels it's all very vague and is worried.

 

Anyone had experience of this mixed cancer and any experience you may think can shed light on the rather vague response if surgeon. I know it's a rare NET type I thinks, but any experience would really help.

 

Thanks

Chris 

  • Hi, Chris, welcome.  I know that surgeons are more and more removing appendix when doing other operations (as a 'belt and braces' I think).  A friend had hers removed last week along with her hysterectomy.  

    I have to say the surgeon does sound a bit vague here but , to be honest, I would accept what sounds like good news.  Does your partner have any follow up appointments or scans?

    Please let us know how things are and come back and talk to us anytime.  (Even in the middle of the night).  Best wishes. 

  • Hi and thanks for getting back to me.

    Yes we have follow up scans in 6 months. We are now under the care of a differrent consultant now as the surgery consultant has done his job. We've been told she is cancer free and intro chemotherapy is an option but the new consultant will decide on that as its belt and braces we are told. Apparently the hipec was belt and braces!!!

     

    The chemotherapy is unlikely the surgeon said as all bloods normal and no visible disease. So watch and waiting.

     

    Would love to have been given an optimistic statistic to hold on to, but as our surgeon has only come across under 30 cases, he just said it's luck, some people stay clear, some don't. Vague !

     

    While he was examining my partner his surgical notes were open on his desk, so errrrr I read a paragraph call post surgery something and the first sentence said 'the abdomen was remarkably clear of disease" if that's the case why wouldn't he tell us that? I understand keeping our expectations down. However, "remarkably clear" is the kind of language he used in his notes, why can't he share it with us. For instance, being remarkably clear puts you in a very good position. But instead it felt like he was playing his cards a little closer to his chest than needed. My partner is very suspicious, even thinking that the massive surgery and recovery may not have been necessarily useful. 

    Not easy, Google doesn't help much and Macmillan are great but still non the wiser.

  • You know you can change hospitals don't you?  If you can find somewhere that you trust more orhas been recommended, think about it. I spent a year at a specialist London hospital who seem to have no idea what they were doing, I asked for a transfer and they agreed immediately.  Am much happier now, even though because of the first hospital's incompetence I now have little time left.  We have options, Chris, use them if you need them.  Good luck and best wishes, hang on to positive thoughts. x

  • Hi

    Thanks for the input and wisdom, I think the searching for answers were there arn't any is pointless so your right, positive thoughts are wise words indeed.

    I will remain positive and some just hope light can be shed on the situation of what she's got, but as you said cling on to what we do know.

    Thanks it did help. X