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Appendiceal Cancer - mucinous adenocarcinoma

_Saxon_
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Hi All,

   I'm relatively 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

  • Just wanted to say hello Saxon and I hope that other members on the forum will be able to share their experiences with you. If you'd like to speak to our cancer nurses for medical advice, they are available on the freephone 0808 800 4040. Lines open from Monday to Friday between 9am and 5pm. Your medical team may also be able answer some of your queries and suggest something for your symptoms.

    All the best to you,

    Moderator Anastasia

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    Hi Saxon,

    So sorry to hear about your situation.  My partner was also diagnosed with appendix cancer and we found that there are two specialist centres in the UK that deal with appendix cancer.  If  you google appendix cancer NHS a link to one of them should come up.

    Hope this helps and I feel the same - the more we help each other and share information the better!

    Take care.

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    Hi Saxon,

    My name is Laura and I have also had cancer of the appendix, or more specifically a mucinous adenocarcinoma. I was suffering from awful abdominal pains for a few years and ended up in A&E in November 2019 because the pain became so bad. They took me straight to surgery because after an ultrasound scan they believed I had appendicitis. We were told I'd be in surgery for around 30 minutes, but I ended up being in there for 6/7 hours. 

    I found out a few days into my recovery that 30% of my bowel, my appendix and a 'mass' had been removed. I was in hospital for one week and two weeks after I was told it was a tumour and was cancer. I was 31 at the time.

    16 lymph nodes were also removed and luckily all were clear but there were cancer cells found in the lymph channel. I was referred to an oncologist who told me that they were 99% sure they've removed all the cancer but I was offered chemotherapy as a 'preventative' measure in case there were any rogue cancer cells that couldn't be found via tests.

    They left the decision with me, which to be honest was a horrible and scary experience. I decided not to have the chemotherapy because they had told me that it could make me infertile and potentially kick start an early menopause. I don't have a family yet and had always planned to. They were also quite positive that the cancer had been removed.

    This was all 2 years ago now, and I'm under surveillance for 5 years. I have blood tests every 6 months, a yearly CT scan and a colonoscopy every 5 years. So far everything has come back clear, and whilst I don't regret the decision to not have chemo, it still terrifies me that it could return. 

    I'm so sorry this has happened to you too and I can understand what it feels like to be told this diagnosis. There's not a huge amount of reading material on this kind of cancer either.

    Hope you're doing okay now.

    Laura

  • Offline in reply to LauGi1987

    Hi , my wife had her appendix out and it came back a Goblet Cell Carcinoma..Also it was mucous adenocarcinoma so she had   lymph nodes removed and only 1 lymph node had a cell.She was offered Chemo as a preventative measure incase of future cancer.She is on 4 rounds but has only had 2 and she is not dealing well with it.She has terrible side effects and looks like her dose is too high so we're back next week to see the oncologist.She is getting great support from the medical professionals and friends. 

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