I had an endoscopy done on Sunday which revealed a large ulcer on the upper part of my stomach. Although cancer was not actually mentioned in so many words the doc made no secret of his real concern. Further tests are to be done asap, ie xray this Saturday.
I would dearly like to hear from people who have either been there, are still in the process of treatment, or recovering? What chance is there of the latter? The waiting and uncertainty is unnerving. I am usually a down to earth person and do not panic easily, but I must say, this is getting to me a bit.
Any support and advice would be greatly appreciated.
Hi there if it is just an ulcer PPI’S will be prescribed maybe an antibiotic and should help clear it up. Other tests will be precautionary. If it is cancerous then op and chemo may be offered.
I am 3years post op and living a new normal life in regards to eating drinking etc.
Thank you, kiddy for your reply. It all helps to put things into perspective. At last things seemed to be moving after having had salivary gland problems for more than a year, which was as good as ignored by my GP as well as by the consultant at the hospital.
So when in November 2018 I had a severe infection in the gland and was given antibiotics, anti-inflammatory, and strong pain killers my stomach problems started - severe pain and cramps in abdomen, which I was expected to put up with until now. Was prescribed nothing and told to take Gaviscon. Now, after the endoscopy they are concerned. I am going for an x-ray on Saturday.
try not to worry, I had the endoscopy and they found cancer,I am still alive and kicking 3 years later, but for me, you really have to fight the system, if by any chance it turns out to be cancer just remember a lot of us are ok and a lot live for another 20 years, Ihad to have all of my stomach removed, I am now slim not fat!!!! The worrying part for me is the they do not do follow up scans at a large majority of hospitals, due to this I asked for a follow up scan to which I had to pay for privately, they found my cancer had returned but could not do a biopsy as was to dangerous, I am a strong person and will always fight the cause after a lot of research and a wonderful oncologist I am now cancer free. Good Luck.
Thank you for your reply. I am happy for you that you are still fine after 3 years. One of my concerns is my age (82) although until very recently I have been very active, playing table tennis and going on 6 - 8 mile hikes. But having been in pain on a daily basis for the last 4 months I feel rather weak now. Having said that, I have now been given and taken omeprazole twice a day and the pain has gone, only slight discomfort occasionally.
As for fighting the system - tell me about! If you read my reply to kiddy you will see what I mean. I'll not repeat it here.
I am not a worrier as a rule and am quite strong-willed. 'Too stubborn and independent for my own good, ' so my friends always tell me. I am lucky to have a large circle of friends, but unless they have been in the predicament I am in, they cannot really understand, nor do I want to depress them with my woes. That is why I appreciate forums like this enormously where people can speak to me from experience.
This Saturday I am going to have a CT scan of thorax, abdomen and pelvic area. Waiting for the results is always a trying time, but I'll try to get back to walking again, maybe not as far, and try to carry on as normal.
Hi, I hope your tests all go well and ppi's sort out your problem. If not and you need further treatment I would advise anyone in that situation to speak to rvi at Newcastle, their upper gi unit is amazing, unfortunatly we did this too late but it was advice we got from this forum. Good luck I hope all goes well for you
Thank you Florrie for your reply. I have certainly been pain-free since taking ppi, though I am still aware of something being wrong. Did you visit the RVI? And what do they offer? Would be interested to know. Thanks again.
We did visit rvi, we asked for a second opinion from Mr Immanuel, this was following advice from someone on this forum. In unfortunately the second pet scan that they requested wasn't good for us. They looked at all imaging from our trust and saw us to explore our options but their care was exceptional and I wish we had gone there earlier. Fingers crossed you don't need this but being prepared is good x
Try not to jump to bad conclusions like i did, from the off. C in that region is very serious and moves quickly. Doctors mentioned it to me after my 1st endosc (i had what they thought was a growth in oesoph .. which fortunately, it transpired after tests, was not a growth but heavy scarring from acid reflux; how lucky was i). But even after that 1st appointment the infamous Ivor Lewis op was mentioned, together with related lifestyle changes, hit me like a bombshell and i expected the worst. Imo doctors mention the possibility of C to prepare you in case C does emerge in which case theyll need to move quickly. I thought the worse .. waiting for test results was hell .. preparing family and friends for the worse too also hit hard .. usual stuff worrying about kids and how would i pay bills .. made a very traumatic time in my life that i recall vividly. I was lucky not to have C but guys on here have had it and also have had the op and live a life. Looking back .. there was a risk of C for me when the scarring was undetermined, but i hadnt lost much weight, also i wasnt feeling tired so it was highly likely mine wasnt C and i, in hindsight, probably over reacted and no doubt the worrying exacerbated my situ.
Case in point, Im going to work later and will probably have coffee with my work mate who had IL six years ago.
I wish you well .. keep perspective .. wouldnt be normal not to worry but too much worry at this stage may be unnecessary and make matters worst. Good luck. G
Good to hear that not all initial findings are malignant even it looks that way. The doc did say that there is a chance that it was just the acid that caused the damage, although I could tell that he didn't think so because of the size and position. I'll keep hoping until I know for sure.
I’m sorry you are having an anxious time, feeling panicked is totally normal, it would be hard to feel anything else. Until you know what you are dealing with it will be hard to settle, I sincerely hope that it isn’t anything sinister and your doctor is wrong. When you say an X-ray is that a CT scan? Normally that is what they use as part of diagnosis with a contrast dye.
I was diagnosed with stomach cancer in August 2018, I started having mild indigestion and just a few problems like bloating after certain foods in February and was referred for endoscopy in March, the first one took place in May, I was diagnosed with hernia, gastritis and an ulcer, all biopsies were fine and I was given PPIs, repeated endoscopy 6 weeks later, gastritis had gone, ulcer remained, given higher dose PPIs 3rd endoscopy another 6 weeks, this time the ulcer still hadn’t healed they told me it looked fine but they took deeper biopsies, within a few days I was called back to hospital and was told I had cancer. 2 days later I had a CT scan and met my surgeon, he told me the scan was a bit ambiguous and it could also be in pancreas, a laparoscopy was booked for a few days later along with all the fitness tests to see how fit I was for chemo and surgery, (at that point I was very fit, 46 year old woman, in gym 5 days a week and feeling great). The laparoscopy was ok, but sore for a week or so but luckily confirmed there was no spread so my path would be 4 rounds of intensive chemo, a further laparoscopy, surgery for partial or total gastrectomy and mop up chemo.
The first 4 rounds of chemo were hard, the being the hardest as I think it was a huge toxic shock to my body, but everyone is different. Each one got a little easier although other side affects like neuropathy got stronger, however 2-3 weeks after finishing on 30th October I was feeling almost well and was able to strengthen myself up for surgery to come, it was scheduled for 2nd January with the laparoscopy on 18th December. Laparoscopy results were good my surgeon said everything looked neat and contained and that he might save some stomach, he would decide on the day. I recovered well and Christmas was a lovely time with lots of my favourite foods that I knew I wouldn’t be eating for a while. I managed to put in an extra 7lbs above my pre chemo weight, I knew it would soon be coming off.
Surgery was a long day for my family, I was none the wiser that I spent 9 hours on the table, it was performed by keyhole so I have one 2/12 inch scar and a few smaller ones for where the drains are. I was out of bed and walking the next day, I was able to only sip water until they’d performed the leak test which is just an X-ray whilst you swallow a solution to check that you’re healed and can start having purées. I was in hospital for 8 days, I struggled at home getting used to my digestive system and with the purées, but I would say I turned a corner after about 5-6 weeks and I was eating soft food and now can eat most things in small doses, well chewed. Life without a stomach is not without problems but it’s certainly enjoyable still, I don’t get an appetite but my body lets me know it’s time to eat in other ways like tiredness, I try to eat every 3 hours or so. My surgeon removed my whole stomach he wanted to be certain he had everything and I’m glad he did, my pathology report showed excellent margins, a good chemo response and no lymph involved.
I’m currently in post op chemo, the first cycle was on 5th March and am not going to lie it was awful, my second dose was delayed by a week and I had that yesterday, it was stopped halfway through due to a reaction to one of the drugs, I now need to decide whether to carry on with the next two, my oncologist is supportive either way as not everyone completes the post op chemo apparently but I’m torn.
Cancer treatment is daunting, it can be scary at times, isolating, physically and emotionally draining, but there are many good days that outweigh the bad, for me chemo is the hardest as I barely recover before it’s time to go again so it takes me away from being a mum which I’ve struggled with. I have been off work since diagnosis, my work is very understanding and I received full pay for 6 months and currently on 50%, it hasn’t impacted us in that respect as I only work part time but I know Macmillan offer advice for people struggling with finances.
I have spoken to many people who have survived and are years down the line, I hope to be one of them. It’s certainly been a rollercoaster and I’m looking forward to stepping off it soon. If I continue the chemo I could be having my last one in 4 weeks so it’s taken 8-9 months since diagnosis.
I really hope that you are not here to join us full time, try not to jump ahead of yourself until you hear the dreaded words for certain.
Wow, it sounds horrendous what you went - and are still going - through. In my case I hope it is just a false alarm. My greatest worry is my age. Could I really physically survive such an ordeal? Although until recently I have been quite fit "for my age" and that is the key, I no longer have the strength and stamina of even 20 years ago. It seems that all of you who replied to me are much younger than I am. Anyway, I may learn more after my CT scan on Saturday. Perhaps all this is just a bad dream that goes away when I wake up.
Thank you, it is a tough journey and I appreciate how your age is exasperating your fears. I have everything crossed for you that it is nothing more than your ulcer or scarring causing problems.
Please keep us updated, I love a success story! Sending positive prayers your way x
Wishing you the best, some good advice above. You have to stay strong and calm and rely on your faith and friends. If it is cancer they will want to move fast which is wise but I would choose a great cancer hospital where they specialize in cancer. It will eliminate waiting for test results and you have the benefit of many drs. Who can consult with each other. I want to Moffitt in Tampa for surgery and Ackerman cancer center in Jacksonville Fl. I had to have radiation to that area and Proton Therapy was the safest way to avoid damage to other organs. I was 68 when this was done and I have it 7 months behind me now and I am cancer free. I was in a weakened state when I found out as I had collapsed because I had lost a lot of blood, I knew something was wrong but due to my ongoing comitments I was trying to hold off awhile. Keep your friends close and your faith strong, best wishes for you .
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Swallowing difficulties 5 months post-op
Bad dumping incident?
Diabetes and oesophagectomy 
Reactive hypoglycemia
