Appendix cancer

Hi there, six years ago I had appendix cancer and subsequent Cytoreduction with HIPEC  followed by five months of 'belt and braces' chemotherapy and yearly surveillance with CT scans and colonoscopies.

A few months ago I started to have some uncomfortable symptoms of feeling full, abdominal distension, lack of appetite and weight loss plus some bladder issues. Tests revealed some cancer cells in the bladder and a subsequent PET scan has shown widespread cells in the peritoneum. My original consultant  has said on review of all the scans it is too widespread to be operable and he recommends chemotherapy to try and shrink it all to ease my symptoms and in the hope that it shrinks enough for surgery.

this is such a rare cancer apparently and therefore there is little information let alone support so I feel very alone.

Has anyone on this forum had a similar experience please. Many thanks for reading this.

  • A very warm welcome to the forum Hmama although I'm really sorry to hear about the new cancer cells that have been found in your bladder and peritoneum.

    After everything you went through 6 years ago this must have been very upsetting and difficult news to receive but I'm glad you've reached out to us as our members will understand how you are feeling right now and hopefully some of them will be along soon to offer their support and share their experiences with you.

    You're welcome to find other discussions about this via the 'search forum' option in the purple bar above but if you'd prefer to talk things through with one of our cancer nurses, you can contact them on 0808 800 4040. Their helpline is open Monday - Friday between 9a.m - 5p.m and they'll do all they can to help you at this time.

    We're thinking of you Hmama and will have our fingers crossed the chemo is successful.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Thank you that's very kind of you to reply. I'm not surprised that there's not been a response as it is such a rare cancer. Unfortunately, it makes me feel so alone even though I have a great husband and family. I do wonder if I posted it in the right place and maybe a different part of the forum might generate a response. That you once again.

  • Hi, sorry to hear about your recent health complications. Unfortunately theres not enough information. 
     

    I have recently been diagnosed with cancer in the appendix. Had surgery. Unfortunately through more tests another discovery has been made! Under further investigation. Feel gutted and scared. 

  • Oh I'm sorry to read that Mini. What surgery have you had? The wheels turn slow don't they and it's the waiting thats the worst. Also not many people have even heard of it. Wretched appendix, why the heck have we got one, it's superfluous and we don't need it especially when it can cause so much trouble!

  • Yeah your right! I had my appendix removed in December. How are you feeling today? 
     

     

  • I've had a lot of abdominal pain today. I have no appetite and have lost a stone in weight which I can't afford to do as I am fairly slim anyway. Just waiting to hear from the oncologist. How about yourself?

  • I know that feeling, I had similar symptoms before they discovered the enlarged appendix.

    Easier said then done, but try to have something to eat even if it's a slice of toast! 
     

    My appetite has not been the same. Don't have the same love for food as I did before. 

    I had an appointment with consultant today. He didn't have any of the results back. I was hoping for some answers and direction today. But unfortunately didn't get that. Waiting is the hardest part. 

  • I'm sorry you didn't get your results. What are they looking at? My appendix burst and hey presto a nasty adenocarcinoma was lurking inside. It spread its seeds and that was the start of my cancer journey six years ago.

    funnily enough, that's exactly what I'm having for my evening meal tonight - toast!

  • Some finding from the colonoscopy. After reading many post on here, I've come to realise every cancer journey is different and symptoms. Nice to connect with people, regardless what the cancer is. 
     

    My anxiety levels are really high! Finding ways to cope! Not mastered any grounding techniques yet!
     

    nothing beats toast!!
     

     

  • Hi,

    I havent been on here for a while due to the fact appendix cancer is so rare.

    My husband found out his ruptured appendix was cancerous last September and I joined to try and find out more information for him (and myself)

    He ended up having open surgery but started off keyhole. 4hrs later he was finally in recovery

    Since then he has had a colonoscopy which was clear and a ct scan, hes just had results back and all clear,

    Hes due back in September for all the above again and bloods, it's so worrying because of the seeds that can happen due to the rupture, your constantly worried my husband's just turned 40.

    And now I'm here with suspected endometrial cancer, life can be so unpleasant at times