Partner with appendix cancer

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 -  x 

Hi Ilovebulldogs,

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 jcleeds 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

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