Partner with appendix cancer

Hi all 

not really sure if anyone can help. 

earlier this year my partner was taken into nhs with appendix issues. 
basically his appendix had a abscess around it. 

nhs kept him in for 2 weeks pumped him full of antibiotics. He came home & they said he would need a colonoscopy & referral. 
I had private health cover for him at work. So he went to see consultant & they did the colonoscopy & removed appendix. Few weeks later. 
after his op - he was very poorly & ended up back in nhs hospital for another 2 weeks as his stomach went to sleep? 

we went to private consultant Monday (thinking he would get sign off) to be told he had appendix cancer - they had removed appendix & he was being referred to Christie centre Manchester. 

he is in on Monday for his ct scans - I am praying that it hasn’t spread - however everytime he eats (he had always had a big appetite) after a few forks full he feels weirdly full. 

So my question is - had anything like this happened to anyone else re the appendix removed and it’s cancer? Am I being naive thinking it was all cut out? Obviously won’t get answers but just wondered if anyone could help 

thank you 

and to each cancer warrior here all my love & support Heart

  • Whilst living abroad I had my "grumbling appendix" removed over 10 years ago, the removed appendix was examined and no evidence of malignancy was found. An ultrasound and CT scan taken before the operation showed a small accumulation of fluid in the lower abdomen but, this was also investigated by a needle biopsy and was found to be acellular "jelly" or mucin.

    10 years later, last year, a routine CT scan for acid reflux revealed large deposits of "jelly" or mucin around my liver, stomach, spleen, pancreas and large intestine. I had no symptoms of anything.

    I was referred to Basingstoke and  was operated on in June to remove all this mucin, along with my gall bladder and spleen. I was diagnosed with LAMN pseudomyxoma peritoneii. The operation was successful, in that all the mucin was removed, but I will have yearly scans as follow ups to check for any recurrence.

    My understanding is that cancers from the appendix can be slow growing as in my case, or faster growing and more aggressive. The treatment will depend on the diagnosis and the results of the pathological examination of the removed appendix.

    There are two hospitals in the UK that specialise in this rare cancer, Basingstoke and Christies Manchester, so your husband will certainly be treated by specialists. 

    This site and also the Facebook groups on appendix cancer can put you in touch with others with this disease.

    Wishing you and your husband all the best.

  • Thank you for the info - Pray x 

  • Below is some information on appendix cancer classification.
    I have copied it directly from a post on the facebook group, ... 
    there is a lot of information, help and support there.
    "It’s new terminology so pseudomyxoma peritonei (PMP) or dessiminated peritoneal adenomucosis (DPAM) are more familiar and easier to find. It is usually low grade and results from the rupture of a low grade appendiceal mucinous neoplasm (LAMN). Did your mom get a pathology report from her appendix which should give her a specific diagnosis? LAMN or mucinous adenocarcinoma is a specific diagnosis from the appendix. Mucinous adenocarcinoma can be low grade or high grade. Well differentiated mucinous adenocarcinoma is low grade and poorly differentiated is high grade.
    LAMN is a polyp that forms in the appendix that grows until it causes the appendix to rupture or perforate. This polyp is formed from epithelial cells that line the GI tract and they produce mucin which aids in helping move feces through the GI tract.
    When the appendix ruptures, it releases mucin and cancer cells into the abdomen. Each cancer cell can land on any organ in the abdominal cavity including the ovaries, omentum (fat layer), spleen, liver, kidneys, etc. and form a mucinous tumor. The presence of mucin and/or mucinous tumors in the abdomen is called pseudomyxoma peritonei, dessiminated peritoneal adenomucosis, or the newer terminology mucinous carcinoma peritonei. Sorry I can’t find the file that renamed this. It is actually a nonspecific diagnosis that doesn’t identify the primary tumor which probably originated from the appendix.
    This is my disease and I have researched it thoroughly. My diagnosis is LAMN. My appendix ruptured so I also have PMP.  PMP is the abdominal spread of disease from the appendix. It is a low grade cancer that can spread slowly without producing any symptoms in most cases. I was fortunate in that mine presented as appendicitis and it was found early. I had cytoreductive surgery with HIPEC in 2013 and now I have no evidence of disease."
  • Hi ,

    I'm sorry that you've had to join a forum like this to seek out answers. There are different types of appendix cancer and unfortunately, it isn't always as simple as taking it out and hoping that's it done. The best news is that your partner has been referred to The Christie, they are one of a small number of hospitals in the UK that specialise in treating appendix cancer (Basingstoke, as  mentioned, being another).

    I'm a Basingstoke patient and had my operation there ten years ago. Both teams are amazing. Your partner's had surgery to remove his appendix and his stomach has its own issues so it isn't surprising that he is experiencing issues when he eats. He needs to be sure and mention this when he has an appointment with The Christie.

    Angela


    Angela 
    Pseudomyxoma peritonei survivor
    Trustee
    Pseudomyxoma Survivor

  • Thank you Angela - I am hopeful time is on our side & can only pray for good news. We are due to br married next June so I am trying to plow on with wedding plans whilst not knowing etc (which I know is the same did everyone going through these terrible times with this disease) 

    Whilst I know you can’t prepare yourself for news - I just wanted to make sure I wasn’t being naive too. 

    my younger sister beat stage 4 cancer 6 years ago & is still cancer free (after it had spread all over) so I know it can be beaten 

    big hugs x

    • Hi ! I was diagnosed with PMP a rare cancer from the Appendix 1 year ago. In the 12 months since i have been treated and conducted much research. If your partner recieves this diagnosis please get in touch,  there is much support here and plenty to be positive about. Kind Regards Steve
  • Hi Steve

    he has been diagnosed with pmp - this was found after the appendix had been taken out & send off to be tested. We are just waiting back for the results of another ct scan (they didn’t do any blood tests?) obviously waiting is the hardest part - well it’s all hard. 

    was yours the same? Since he has had the appendix out he is still struggling with his tummy - after the op he was back in hospital for another week and a half as his stomach had gone to sleep. At this point we didn’t know about the pmp. So we are not sure whether he is tummy issues are stress of worry or anything else. 

    any information you can share (if that’s ok) would be brilliant 

    Dx 

  • Hi D

    My diagnosis was different.  I had a CT scan for something else and it picked up high volume of PMP around the abdomen diaghram liver pelvis etc.  This came from my Appendix years when a polyp burst unknown to me many years earlier.

    After 3 anxious months i was told that the tumour was low grade and not affecting the small bowel and hence i was suitable for Cytoreductive Surgery with HIPEC which i had November 7th last year. 

    After a tough recovery 3 months or so i was given the all clear. Blood results were normal in March.

    However another series of tests this months proved different and a problem. Only in 10 -15% of cases will tumour come back this quickly so I'm unlucky. Now awaiting to see Oncologist to see if Chemo might work. 

    Your partner has every chance of getting thru this especially if its low grade PMP and they can remove it. PMP is usually low grade tumour that usually does not spread to the lymph nodes and other organs. 

    Please do let me know if you have any questions i will help in any way in can. 

    Steve x

  • Hi

    I am sorry to hear that you and your husband are going through a tough time. You can get good support through this site, and I can see others have given you really good information so far. We know how you are feeling. I found the early days of getting a diagnosis the most difficult! I didn’t know what I had or what the treatment was. I was so worried. I was diagnosed with an appendix tumour LAMN and PMP following a hysterectomy I needed to remove an ovarian cyst in April 2020. I am now recovering from my second operation… cytoreduction and HIPEC which I had 8 weeks ago in Basingstoke. 
    I hope your husbands scan goes well and I am sure you will get further answers to your questions from Christie very soon. 

    Good luck and best wishes to you both. 
    Kaz x