Appendiceal Cancer (mucinous adenocarcinoma)

Hi All,

   I'm new to this forum and was just wondering if there are any others out there who have had the mucinous adenocarcinoma form of appendiceal cancer. It's a very rare form of cancer.

   I was diagnosed in late 2019, had my omentum and appendix removed in early 2020 and have been on chemotherapy (on and off) since then. Unfortunately, the surgery revealed that the cancer had spread to many parts of my abdomen, especially my colon. The mucinous fluid has also got into parts of my chest cavity. Regular CT scans have shown that the chemo seems to have prevented any further significant spread of the disease but it has not reduced it, as was the great hope. Even so, I've still been able to maintain a reasonably active and pain free way of life throughout.

   Since earlier this year, I've been having a break from chemo. However, recently, I've had to have a bowl stent fitted and since being discharged my general energy levels have been very low - more so than ever before. I'm not sure if this is down to the cancer itself or to other factors (eg: stress/psychological factors, new low fibre diet, the procedure itself). From what I can ascertain, the lastest CT scan, taken to assess the bowl blockage, seems to suggest that the cancer has not progressed that much compared to an earlier scan taken in May, so perhaps the weariness is not due, in the main, to the cancer. Has anyone else experienced prolonged fatigue after having a bowel stent fitted? If so, I'd be really interested to learn how things progressed for you. I know that each individual's cancer journey is different but to be able to compare notes with this proviso in mind must be beneficial.

   My main aim in joining the forum is to share experiences and information with others. I am particularly interested in finding out about treatment options available on the NHS (and elsewhere - even abroad) and especially about centres which may have surgeons/oncologists, etc. who specialise in appendiceal cancers.

   I hope that the above helps to get a few balls rolling, so to speak. I look forward to hearing from you.

   Fortune favours the brave.

   Together we can help each other to stand up to cancer.

   My best, Saxon

  

  • Hi  and a warm welcome to the Online Community. I myself have a different type of cancer so can't compare notes but reading your post makes me so proud that this awful disease doesn't defeat us, on the contrary we go out all guns blazing to kick it in the butt.

    I hope other members of this group reply soon, though, as you say, it's a very rare form of cancer. It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep writing the same thing over and over. You can amend or update it at any time. 

    To find more information covering diagnosis and treatments there are pages covering most types of cancers which can be found on our Online Information and Support Section

    The Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

    Sending you welcoming hugs and wishing you all the best,  B xx


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    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Hello 

    I'm sorry to read about your diagnosis. Have you been referred to a specialist? If you are in England, there are three hospitals that treat appendix cancer - Basingstoke, Good Hope and The Christie.

    Angela x


    Angela 
    Pseudomyxoma peritonei survivor
    Trustee
    Pseudomyxoma Survivor

  • Hi I had omenthal caking and was removed early 2021 I have the mucinous you speak about travelling up to my lungs. I've just had my second operation of the year to have the pseudo removed from the outer wall of my right lung. I have just been told it has now attached itself to the heart as well about 2-3 cms for now. Fatigue set in with me when I started to get short of breath and found myself yawning a lot more than I usually would due to it being on my lungs. Hope this helps a bit. Any further questions just ask.

  • Hi Saxon

    I have just read your post and wanted to reply. My experiences are different but just wanted to acknowledge the difficult journey you re having both physically and emotionally. I hope you get support from this forum. Stay strong. You re a survivor. I only know of the Christie and Basingstoke… both in NHS England. I am in Wales and had to wait to get funding approved to be referred to Basingstoke as there are no specialist treatments available in Wales. 
    xx

  • Hi Kaz,

    Thank you for your supportive contact.
    I'm sorry not to have replied sooner but I've been battling excessive tiredness of late and cannot always get around to doing what I would like to do each day. I'm sure that you will be all too familiar with what I mean.

    I had my big op in Christies earlier last year and have been on chemo (on and off) ever since. I've just started my third round of treatment - last week - and the dip is kicking in now so the fatigue is quite accute.

    I'm pleased to hear that you were able to get the treatment you needed at Basingstoke. Christies looked after me extremely well. They were all so kind and understanding. I met some wonderful people there.

    The hope has been that the chemo would start to make the cancer shrink but, to date, it has only managed to hold it in check. Of course, I'm grateful for this small mercy but my chemo options are running down. I couldn't take one drug because of its affect on my heart and another has caused nerve damage which may take a long time to resolve.

    Still, I'm an optimistic fighter and I look out and see the possibility of trials and experimental treatments ahead. I also see that a new drug is being trialled in Spain which may help suffers with our kind of mucinous cancer.

    I have a small nucleus of friends who have got my back and my wife and family are right by my side. It's never an easy road dealing with this kind of thing but we have to stand strong together and fight back. Simply knowing that there are others, like yourself, to whom we can reach out for moral and emotional support is incredibly empowering. 

    I look forward to keeping in touch and learning how you are progressing.

    Thank you for making contact.

    My best, Saxon. 

  • Hi Angela,

    Thank you for your contact.

    After first being diagnosed at one of my local hospitals, I was referred to the Christie hospital for the removal of my omentum and appendix. I'm still under the overall care of the surgeon there who operated on me but also under a specialist oncologist at another of my local hospitals where I am currently receiving chemo treatment.

    Chemo is holding things at bay but I'd like to see it reversing the cancer.

    We live in hope. Every day is a new day.

    Take care, Saxon.

  • Hi Saxon

    it sounds like you are doing all you possibly can and have great support too. You have great determination to help you stay strong. You sound like a fighter! Take one day art a time. I try to do at least one nice thing a day. It seems to help me a lot especially when I m feeling a bit down. X