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 _Saxon_ 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
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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