Hello Passive, 

Welcome to the forum and I'm sorry to hear about Mum's diagnosis. 

Abnormal growths (tumours) can develop in the appendix, which can be benign or cancerous (with the ability to spread to other parts of the body). They can be difficult to diagnose and often go unnoticed unless the tumour spreads to other parts of the body which is what sounds as though has happened in your Mum's case. 

There a few different types of cancers that can affect the appendix so it's difficult for me to try and signpost you to any information that may be available. 

It's good that your Mum has been referred to the University Hospital. As neither of you is happy with the treatment plan that's been discussed I wonder if it's possible for your Mum to ask for another Dr to give a second opinion. 

You might find it helpful to talk through your concerns with our team of nurses. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi there Passive,

I'm sorry that you're going through this, but I'm glad I caught your post! Appendix cancer is indeed very rare.  My wife has just been through treatment for appendix cancer so I can help signpost you to some helpful information.

Pseudomyxoma Survivor is a charity that helps those with appendix cancer and have lots of information on their website. As Jen says, there are a few different types, the most common being pseudomyxoma peritoni (pmp for short), but my wife had appendiceal mucinous adenocarcinoma.  

The charity also have a very active support group on Facebook, you can apply to join it using the link below:

www.pseudomyxomasurvivor.org/.../

This may be tricky with your mother being in Estonia, I don't know what treatment centres they have over there, however, its very important that she gets seen by an appendix cancer specialist.  If she does, this type of cancer can often have a positive prognosis.  In most cases, the first line of treatment for this type of cancer is cytoreductive surgery with HIPEC (heated chemo that they circulate round your belly at the end of the surgery), systematic chemo generally isn't the most effective treatment for this type although would still be needed if it's spread to her lymph nodes.   Again, some of this is very dependant on the specific type of appendix cancer that she has. Where chemo is required, I believe that a similar regime of chemo to colon cancer is used (oxaliplatin I think?).  I  understand with chemo that sometimes it can be a bit of trial and error to get the right regime. The surgery can typically be carried out by a specialist even if the cancer has spread extensively through the abdomen, although there are a few places it can spread to that makes it inoperable.  

There are two specialist treatment centres in the UK (the Christie and Basingstoke hospitals).  I know that there are some treatment centres in Europe, certainly one in France.  If you contact the PMP charity above they may be able to point you to the best centre.

I hope this helps, feel free to message me if you want any further information.

T

Hey. 

thank you so much for yor reply, i read your text pretty much as soon as you posted it but been so busy with everything that havent had a chance to reply. 

im so sorry about your wife, how is she doing? hopefully as good as my mum, im pretty surprised how well she is taking it all in general. next appointment on 25th and she will find out how well she is responding to chemo. 

for now i translated your text to her, and asked to find out what exactly does she have and what medications are used. its hard as i know nothing about medicine , neither does she :) 

but what you mentioned , oxaliplatin? thats what she is taking, once every 3 weeks in hospital, plus capecitabine accord  1800mg 2x per day. 

so... thanks to your reply, im going to find out what she has exactly and what suppport group to join and hw else i can help her. its hard being in another country and having to translate all without actually understandig half of it but will manage. 

thank you again for reply and hope to hear from you soon. pille

Hi Passive

I hope your mum is doing well? I'm a 32yr old female and I'm in the middle of treatment for appendix cancer. Mine is mucinous adenocarcinoma.

I have had 2 surgeries, first to remove my bladder, ovaries, womb, fallopian tubes, and cervix. I also had a right hemicolectomy, sigmoid colectomy and transverse colectomy. I had a Hipec chemotherapy bath and surgery took 13.5 hours. 

I then had 3 months of xelox chemotherapy, that's basically what your mum is having now. 

Unfortunately it came back but the chemo I was having managed to reduce the two small tumours and make them dormant. I've just had a pelvic lymphectony with interoperative radiotherapy which has gone very well. I'll be having one more lot of chemo and hopefully that'll be me in remission.

My consultant is one of the world's leading colorectal surgeons specialising in complex, recurrent, and rare cancers such as appendix cancer. 

I wish you and your mum all the best, 

M.