Hello all,
Having been diagnosed with stomach cancer back in January and told at the time I had months rather than years to live if we couldn't do something about it I am now approaching the end of my treatment. I have joined the forum as I may have some questions about living with no stomach (well next to no stomach - sub total gastrectomy) and also because I may be able to support others embarking on a similar journey by sharing my experience.
to share my journey I was diagnosed in January having spent a week in hospital before Christmas with what I thought was an ulcer flare up. I have had ulcers since I was in my early 20's (misspent youth, too much caribbean rum) and have managed that with medication when required ever since. Anyway the flareup prompted me to book in to A&E and shortly after Christmas I was told that whilst the ulcer was seriously thin there was also a malignant growth sitting within it. There were concerns that Chemo might shrink the tumor but also perforate the ulcer which itself can be fatal so they decided the best action was to operate immediately to remove the tumor which obviously meant also removing my stomach. the first operation (in January) had to be aborted as the surgeon on cutting me open found complications in that the stomach had stuck to the pancreas and had leaked onto it (potentially cancerous cells) as the pancreas was involved he could not do anything else other than stitch me back up and refer to the pancreas team. The pancreas team would not approve further surgery without Chemo and as that had already been ruled out due to risk of perforation I was basically classed as palliative care only on my hospital discharge form. so I was back to months rather than years to live. A further consultation with the stomach surgeon explored the possibility of chemo therapy and having been inside me once and seen how quickly I was recovering from the Op ( I am 60 but very active and generally fit and healthy) he felt the the risk of perforation was perhaps lower than initially felt from the scans and I was given the option, whilst being aware of the risks, to embark on a 2 month course of chemo therapy, also whilst recognizing that the chemo may or may not be sufficient to reduce the tumor enough to allow an operation (with the agreement of the pancreas team). After much research and with some trepidation I decided to go for the chemo. This was FLOT which was described to me as a particularly aggressive form of chemo. Anyway it was no where near as bad as I imagined it was going to be, not pleasant, but I had this preconception that I was going to be bed ridden throughout, which I wasn't. After that the stomach and pancreas team agreed to do a joint surgery to remove my stomach and the cancerous tumor with it. the Op which was in June was straightforward this time and they removed most of my stomach, the pancreas surgeon whilst in attendance did not need to get involved other than to see the condition of everything and agree that the procedure should go ahead. My recovery from the op was again quite quick. At the next consultation after the op the prospect of Adjuvant Chemo was raised and again after a little research and due to my experience with the pre op chemo not being too bad it was an easy decision to agree to it. It would again be FLOT for 8 weeks (4 x 2 week cycles) I managed three cycles which again were not too bad, in fact easier than the pre op chemo, I assume because I now had a much smaller but healthier stomach. Anyway during the recovery period after Cycle 3 I had a bit of a wobble and went into hospital with low blood pressure and severe diareah (can never spell that). At this point (although no infection could be found) the oncologist decided that my body had had enough and it was time to stop the chemo, which I agreed with. So we have now done everything we can and although I have a follow up meeting with the oncologist on Wednesday I believe I am now looking at years rather than months, although there is always a risk it will come back (my post Op Historology was not great) the operation removed the tumor and the Adjuvant chemo that I managed to get through should have cleaned up any cancerous cells that might be lurking in my lymph nodes or anywhere else.
If anyone is at the beginning of their journey I would be happy to talk about my experience in more detail if that might help and if anyone is further along than me I would be eager to hear how life with a partial stomach is for them as I am only slowly getting used to it.
