Total gastrectomy

Hi

Welcome to the group! 
My cancer was signet ring cell and I was told that as it was found early it was not an issue.  I had Stage 1 but chemo eradicated it so I had a clear pathology.  Many people who don’t contribute to the group supported me when I was diagnosed.  They had been successfully treated .  I am now four and a half years since diagnosis and live a normal life. Eating and drinking much as before, although smaller portions.

A total gastrectomy is a bit more challenging to recover but there are many on this group will share their experiences. 
Are you to have chemo before or after surgery?

I will send a Friend request and do message if you want to.

Good luck!

Hi Cestrian, so sorry you had to join this group especially with you having a young family.

My husband had a total Gastrectomy 11th Jan, he was in hospital just 7 days, apart from a chest infection that put him back a couple of weeks he’s doing great. He has to eat every 2 hours ( it was hard to start with but he doesn’t complain about it now) at last hes putting a little bit of weight on. I’d say he’s doing all he did before. He’s 80 next month so no work involved  but he’s doing fine. I do worry about the cancer coming back as he didn’t have chemo. Anything I can help you with just ask xx

Hi Jacqui,

many thanks for your response. It’s lovely to hear that you can get back to a new normality after this.  I have been told that I have also caught it very early. I am currently T1/2 I think that they will be able to tell me more post surgery.

Hi sue, thank you for your reply. I’m glad to hear that your husband is recovering and adjusting well. Unfortunately I think we’ll all be adjusting to living with a little fear that it may come back but from the sounds of things your husband is very fit. I hope you both enjoy celebrating his 80th birthday next month x

My husbands stomach cancer was only picked up as he has yearly CT scans for his kidney cancer, if it wasn’t for that I don’t know what would have happened as he had no symptoms at all apart from burping a lot (and still does) they also found Lymphoma at the same time, we haven’t got round to treating that yet, next month!  He was stage/grade 2, clear margin and no lymph nodes involved, that’s all we really know yet. Have you had your staging lap yet?

Hope it all goes well for you xx

Hi Cestrian,

Dont be too hard on yourself, it’s natural and normal to be overwhelmed by the thought of life the other side of surgery and life without a stomach - I was too !

But, to offer some light at the end of the tunnel, I’m nearly 600 days from waking up from surgery with my stomach and tumour removed and I feel better than ever and blessed to be around to do things with my kids who are 22, 19, 9 and 7 now.

Stay positive, don’t fear the unknown you can have a good life the other side of surgery - I promise !

Hope it helps, stay positive and keep walking forwards … and remember the path to success is never a straight line !

Hi Sue, it sounds like you have both really been through it recently. I’m glad to hear that the stomach cancer was picked up early. Mine was picked up via a gastroscopy. It couldn’t and still can’t be seen on a CT scan which has made me a little nervous for screening.

yes I had a diagnostic laparoscopy at the end of November, there was no sign of any further spread at that time. I have finished the first 4 rounds of FLOT and am just awaiting surgery.

I hope all goes well for the remainder of your husband’s treatment. It sounds like he is doing really well x

Hi Red 10

Thank you for your lovely message, as I’ve said previously I find your positive outlook really reassuring.

Apart from the tumour I’m physically fit, I don’t smoke, drink or eat red meat (for what it’s worth) but I’m such a big foodie and I find a lot of my life revolves around it. From what I’ve read you have done amazingly at adjusting and I’m hopeful that I will to. I spoke to a nurse about how you are able to still eat really well and she told me that I wasn’t to do that…how can advice be so different?

I look forward to seeing the light at the end of the tunnel and making plans with my little girl, I’m so thankful for her. I just can’t help feeling more and more nervous as the surgery date grows closer. Part of me looks forward to having it removed but like you say it’s the fear of the unknown and how I’ll wake up from surgery. Speaking to people who have come out of the other side really helps. Thank you

Hi Cestrian,

No worries at all, and like I say I was exactly the same as you pre surgery - full of apprehension and some fear of the unknown as to what life the other side was going to be like !

However, honestly - and I say this with hand on heart, life is good and I feel so blessed to be around and even the mundane things I took for granted like the School Run give me pleasure and gratitude for life now.

That is so interesting to hear, did she offer any rationale or explanation as to why you weren’t to do that ? I’m really interested to hear why !

My surgeon who now does all my checkups is an Oxford University medical student, graduating with a distinction and has since worked at various centres of excellence for gastrointestinal cancer treatment and surgery in and around London such as St Mark’s Hospital, Barts and The Royal London, University College London and finally settling at The Royal Marsden. His training had a particular focus on a minimally invasive, laparoscopic approach but did my surgery via open operation.

Upon gaining his CCT he undertook Senior Fellowships at St Thomas’s Hospital with an additional focus on complex open revisional Upper GI surgery. This was followed by international laparoscopic and robotic training at the Seoul National University Hospital in South Korea, the highest volume gastric cancer centre internationally and also in Japan.

He returned to The Royal Marsden as a Consultant and has a focused high-volume, minimally invasive and open oesophageal and gastric cancer practice dealing with complex cases.

He is a founding member of the European Gastric Cancer Association and has an active interest in translational research at the ICR and Biomedical Research Centre. He has publications in high impact factor journals and a number of books published by Oxford University Press.

Im happy to share his details if you’d like to book a consultation with him too - Dr Asif Chaudry.

You can see his reviews on Google Reviews and Iwantgreatcare.org as well …

www.iwantgreatcare.org/.../asif-chaudry

So, Im really intrigued why your nurse is advising against the advice of such an experienced and decorated expert in this field !

He’s worked wonders and I never thought I’d be in a place where I was able to be in a pub again for food (yesterday tea time) with my Wife and kids and ate a full pub Roast Beef dinner, with two colas and an apple and blackberry crumble with custard for dessert ! (I have to skip the starter if I want to have room for dessert!)

I have to eat slower than everyone else and chew very thoroughly (as we don’t have a stomach to break the food down, so have to do it in our mouths) but if I go slow, take my time and enjoy it there are no issues.

I’m a foodie too, so don’t panic - there is hope for you to continue your love for it !

Did they give any indication to you why you weren’t to do that ? It hasn’t had an adverse effects or issues on me yet and I had my last checkup last Wednesday with him and all was OK - whew !

I hope that helps reassure you a bit more !

Hi Red 10,

your messages certainly do reassure me and so far throughout this process each stage has been better than I’d expected so I keep everything crossed that will continue through surgery and post op chemo. I already view things differently so understand your new found gratitude for previous mundane tasks.

your surgeon sounds amazing, I bet you felt really reassured and in safe hands. I wouldn’t even know how to go about having a consultation with him.

the nurse that I spoke to reiterated that food now needs to be thought of as fuel rather than something to be enjoyed. She advised that the oesophagus and bowel weren’t designed to be stretched and that this could cause problems. She stated that I could create a u bend which could make it difficult for food to pass smoothly through.

I’m glad to hear that your check up went well again it provides reassurance that there is a good life to be had at the other side.