Newly diagnosed

Hi

I had very early stage stomach cancer and there was a lot of debate as to whether I should have chemo before surgery.  The surgeon was happy to operate but the oncologist said why was I not being offered chemo first.  I decided to have chemo before surgery because it’s a lot harder to tolerate the chemo after stomach surgery.  This is because chemo does affect your stomach and I didn’t want to regret not having chemo!   Lots of people on this site have had chemo before and after surgery.  That is viewed as the ‘gold standard’ treatment!

I was really upset at having to make the decision but in the end decided to have chemo first. I had three lots of ECX and it was hard but it did it’s work and I had a clear pathology after surgery I.e. there was no cancer left!

I had a partial gastrectomy just over a year ago and life is pretty much as it was before, which I would not have believed possible!

Happy to answer any questions you have so PM me if that’s easier!

Xx

Hi, i had a total gastrectomy in October and I had 4 rounds of FLOT, before and after. Please do not be afraid to ask your consultant and team any questions you have. I had various other tests after the CT scan, the laparoscopy is usually important in staging. It sounds very positive that your consultant already thinks it is early and therefore your treatment may not be that drastic. I wish you all the best. 

Hi there, wishing you all the very best for your scan and hope that it shows they've caught it early.

Unless you have been caught at stage 0 or stage IA, there is ample evidence to show that post-op/adjuvant chemo will improve your chances of survival. While chemo can be hard and unpleasant, if it were me, I would certainly be pushing for it. I'd probably want it even at stage 1A, but that's just me. My reasoning is because stomach cancer is notorious for spreading through the lymphatic system even at early stages and it can't always be seen on scan.

They ought not to tell you about post-op chemo based on a scan as it should be decided based on the pathology of the lymph nodes removed during surgery to see if there are microscopic traces in the lymph nodes removed - that's why it's important to ask them to ensure they remove at least the UK standard of 15 nodes even if the cancer is very early. In more advanced cases, it's important to push for as many nodes to be removed as humanly possible during surgery (my dad had 76 removed).

Yes, there is always the risk of seeding cancer through surgery which is why post op chemo is really important. And, in the case of anything more than stage 1B, it's really important to get pre-op chemo too, to shrink as much as possible - not just what they can see on the scan, but anything microscopic too.

Hope this helps and do keep us posted on how you go

SDH x

Hello SDH, I read a lot of your posts about your Dad and found them very helpful, I hope he is continuing to do well. I had my stomach and spleen removed in October and I was then told that the cancer was stage 3. I had 29 lymph nodes removed, and 7 had been infected. I managed the whole 8 rounds of FLOT, even though the 4 after surgery have been particularly gruelling, emotionally as well as physically. I remain cautiously optimistic now, but never complacent. I have the most brilliant and positive oncologist who tells me that he has stage 4 patients still visiting him well beyond the 5 years we all talk about. I wish your Dad well and please let us know how he is getting on. Do you have a blog? 

Hi Maggie,

Lovely to hear from you - I'm so pleased that you're doing well and hope you continue to do so! I'm afraid I don't have a blog, no. Sending you a friend request so I can PM you, hope that's okay.

xx

That’s lovely, thank you. I need all the positive feedback I can get. I’m new to actually using this page although I have read lots of posts. I am now a member. Look forward to hearing from you at some point. Thanks, Maggie

Hi Maggie. I had a total gastrectomy in August 15 due to a Neuroendocrine tumour. They took out 20 lymph nodes and the cancer was found in 2. I was told that this type of cancer doesn’t respond well to chemo so that was the reason for the total gastrectomy. There are many different types of stomach cancer so this can affect your treatment plan. Write down any questions you may have before you next see your consultant and I am sure he will explain the best options for your forthcoming treatment. 

Take care 

Donna. Xx

Hi Donna, I have had all my treatment too, pre-op chemo consisting of 4 rounds of Flot, TG on 24th of October, followed by 4 more rounds of Flot which commenced 27th of December. I am really struggling now to gain weight and am hovering at under 7 stone. I was 8 st 5 when diagnosed, which signified only a small weight loss at that time. I have to take creon and am wondering if they are making me worse, I assume they might not agree with everyone.

I am looking for useful and positive information, a lot of your previous posts helped me a lot as I was going thru treatment. Its a very daunting process, but I'm told because I was fit, healthy and active, I was able to tolerate treatment well. Its now a matter of recovering from my final round of Flot, resting and gaining weight. 

Please keep the positivity going.

Maggie55

 Sorry I replied to the wrong person. I will blame it on jet lag as we had just got back from holiday. I too take Creon and this did help me. I lost quite a bit of weight but at the time the dietician told me that eventually I will find my new body weight and things will eventually settle down. That has happened but I feel like I am constantly eating to be able to achieve this. Feel free to message me if you have any questions as I don’t mind trying to help if I can. Best wishes with your recovery. 

Take care

Donna xx

Hi Maggie

I escaped with a partial gastrectomy but had pre and post op chemo. My “fighting weight” pre diagnosis was 8st and I managed to pile on 6lbs before surgery. I now weigh 6st 6lb, so a similar weight loss to you. I have been this weight for nearly 12 months now so think this is my new normal. I was originally put on Creon as I was emptying my bowels after every feed. They certainly helped with that and I was taken off them and everything was fine. I am now back on them as blood tests showed I was deficient in a number of vitamins and minerals and I wasn’t absorbing fat. Whilst I haven’t noticed any differences in weight, now I am back on them, I am hoping that I am absorbing all the good stuff now! I tend to only take them in the mornings though as I can get a little constipated and uncomfortable if I take too many.

Although we are all different, I was back in work around 3 months after my final chemo. I joined a gym (and I am an old bird!) and lead a full and active life...in fact I am out again this evening.

It looks like you coped really well with treatment but if you are concerned about the Creon, have a chat with your dietician. I was told because they are completely natural, they can’t do any harm. 

Good luck in your recovery and hopefully you be back fighting soon.