Primary cancer of appendix and secondary peritoneal cancer

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Hi everyone just joined up. I went to A&E on Good Friday with pain in my right side ribs thinking I had a chest infection or something - after tons of tests, scans and 2 colonoscopies I was told last week I had cancer of the appendix which has spread to the peritoneal cavity (stage 4). I am 48 and relatively healthy so it was a bit of a shocker! I’ve had pretty bad acities and have been drained twice. I have been told cancer of the appendix is pretty rare so wondering if there are any specific forums on here for that and secondary peritoneal cancer? I am starting chemo 25 Jun. Any info greatly appreciated 

  • Hi and a warm welcome to the board. As you say, it is quite a rare cancer and there isn’t a specific forum for it but There’s a really good link in the post  below which will hopefully be helpful? I’ll also tag  to see if she’s still active on the board and able to help!

     Appendix Cancer - Goblet Cell adenocarcinoma 

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi  

    There might also be some helpful information in this group in the community-

    Pseudopyxoma Peritonei Group

    And there may be more in this group which could be useful

    Peritoneal Cancer Group

    Sarah xx


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    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi

    Not sure if its quite the same but my husband has Caecum cancer which started near his appendix with spread to liver and peritoneal, I've found it very difficult to find anything on this specific cancer but I have found this forum great for support and advice on dealing with the symptoms and treatments. Please feel free to read my profile. 

     Nancy x

  • Thanks,  , I'm still here. Sorry for the tardy jump-in (I've not been well). 


     , Please make sure that your case is known to one of the appendix cancer teams. They are in Basingstoke, Birmingham and Manchester. They should review your case before any further treatment is given. In terms of support, the most active group is the Pseudomyxoma Survivor one on Facebook. There's also, as has been pointed out, the pseudomyxoma one here.

    Always happy to help (if I can!).


     pmpsurvivor 


    Angela 
    Pseudomyxoma peritonei survivor
    Trustee
    Pseudomyxoma Survivor

  • Hi Angela 

    Thanks for replying - my Oncologist has spoken about the Basingstoke team last week in my first appointment - but said the focus right now should be chemo to reduce/ kill the cancer and then they will make an assessment on operative options etc.

    Obv I am all new to this so any advice appreciated Slight smile

    Angela how long since you were diagnosed and what treatment have you undergone - are you in remission? And if yes how long?

    Thanks

    James

  • Hi James

    Brilliant news that Basingstoke has oversight. I was misdiagnosed with ovarian cancer in 2010 and then had that changed to pseudomyxoma peritonei (PMP) after a hysterectomy. I had cytoreductive surgery (CRS) with hyperthermic intra-abdominal chemotherapy (HIPEC) in 2011. The cytoreductive surgery aimed to remove all visible disease (down to 2mm) with the HIPEC sweeping up any remaining disease.

    I was diagnosed with a recurrence about 3 years later and had further treatment in Basingstoke this February. I'm not disease free and that wasn't the intention of the last surgery. The intent was to improve my quality of life, which it has. Scans every 6 months for now to monitor progress.

    Angela


    Angela 
    Pseudomyxoma peritonei survivor
    Trustee
    Pseudomyxoma Survivor

  • Hi Angela 

    That’s an amazing journey and just reading it fillls me with hope that there are options out there to fight this. From what the consultant has told me I know I will not be “cured” but I have a 5 and 9 year old  (I was a late starter Slight smile), so really focused on extending my life as long as I can for them and my wife and family

  • Hi Jimbob99

    Much Like you I was sent to A&E with a burst appendix when I was 48. 
    After Appendectomy and subsequent pathology I was fount to have an ex goblet cell carcinoid tumour. Right hemicolectomy and chemotherapy followed.

    I was surveilled for 5 years post chemo and given the all clear.

    last month, six years since my treatment I was found to have extensive peritoneal metastases.

    I’m 55 now started my Chemo again today, 3 days after you. How did it go?

    I just thought I’d reach out to you as our stories seem quite similar.

    My oncologist is also speaking to Basingstoke. 

    I’m happy to share if I can be of any help

    Good luck

  • Hey Richie

    Started last week. I am on Folfox and Vectibix. Seem to be doing ok bit tired and not sure if you get more side effects the further you get into chemo treatment. 

    My oncologist has said need to get the cancer reduced then I think Basingstoke do a risk assessment. Main issues for me at the moment are ascities (not sure if you have that issue) - been drained twice and maybe another imminent bit hoping the chemo stops the fluid - also have a bit of that fluid on my right lung which causes some breathing issues but can do most day to day stuff at the moment.

    How’s your treatment gone so far? Yeah happy to share info ongoing if that works for you Thumbsup.

    Take it easy

    James