Gastric cancer what will happen...

Hi,

I'm very sorry to hear about your Dad's diagnosis, this must be an incredibly hard time for your Dad, your family and yourself and I know exactly how it feels. My Mum's stomach cancer diagnosis is also inoperable and it is also incurable so the treatment offered is only chemo as well. She's being given the FLOT regimen which I think is very common for gastric cancers and while there have been some issues, overall, she's being able to get through it.

I hope that the oncologist appointment clears things up and gives you answers to lots of your questions. I understand usually operations are off the table when a cancer has spread and in those cases, it may be more dangerous to do an operation and cause even more spread. But every case is unique. I try to think it is a positive that there are at least some treatment options at all.

I'm certain it'll be looked at by your Dad's oncologist but it would be good to check if he's applicable for immunotherapy which is only if his cancer is HER2 positive. My Mum's isn't so it wouldn't be of any use to her but I live in hope that other immunotherapies will be approved in good time or a suitable clinical trial later on down the line will crop up.

It's a really hard time and I feel for you. Once there is a plan of action and treatment begins, there will be days where it gets better and you start feeling a bit more positive. I'm sorry again, it's horrible being in this position and at times it does feel horrendously bleak. I just try to focus on each day as it comes as there is nothing I can do about what’s going to happen in the future. 

I hope things get better for you and all my best wishes to your Dad during such a hard time. 

Hi thank ypu for getting back to me.

Sorry to hear you are also experiencing this. Did they say it was incurable before even seeing the oncologist? 

Thank you I will add it to my list of questions, last time we were at the hospital I was so upset I was pretty useless and just left in tears. I'm still unclear exactly the type of gastric cancer, we were told it hadn't spread beyond the stomach but the letter from the hospital states otherwise....

Everything just feels so crap at the moment and I keep trying to show a brave face for my dad but he knows things are not good. He hides his symptoms and puts on a show for us I think.

How has your Mum responded to the treatment? There's so many things I want to try and do but weary of booking things incase he gets worse... 

Thanks again for replying x

Hi, no problem at all,

My mum was informed properly about her diagnosis by her oncologist although it took a little while, as her team were assembled and all the biopsies and results were looked out. 

I completely understand that when a diagnosis is first told, it feels so overwhelming and of course when you're unprepared, you don't even know what questions to ask! It would definitely be useful to know what kind of stomach cancer it is and if it has spread, if it has spread, then how much and where, and exactly what chemo regimen it will be, etc. 

I'm sorry that the information you've been given so far has been muddled, it must just add uncertainty and anxiety on what is already such a horrible situation but hopefully once you have a proper meeting with your Dad's oncologist, everything will be clarified.

My Mum had absolutely terrible symptoms beforehand and it was so bad that she's actually gotten much, much better on the chemo which is strange to say when usually you'd feel worse on chemo. She had the weight loss beforehand and has some typical symptoms such as fatigue, mouth sores and lack of appetite but otherwise, it's actually been okay. She's still able to walk everyday and on good days, spend longer out seeing people.

We're not sure yet what the response has been - she's got two more rounds to go, then a scan, and then after that I suppose another consultation and decision on what will be next but I think the plan so far is chemo, a break, then more chemo but from there we're not sure and I suppose even her team isn't sure until they see the results. 

I hope it helps to share my Mum's experience! It's hard but I take comfort from knowing we're not alone in going through this and all the positive stories on Macmillan from other people and generally on how treatments are improving and changing. Hopefully you can plan lots of lovely things for your Dad and the chemo won't be too bad for him! I'll post updates here too whenever I have any if that helps too

Take care and I hope your Dad feels a little better in time about everything xx

Thanks again for sharing your story. It does give me a glimmer of hope that we still have more good days to come and life will continue to be enjoyable.

The letter from hospital just says Metastasis cannot be measured? But as daid we were told it hasn't spread... so again slightly confusing communication. I'm going to write down questions then at least if I cry I can hand over the paper and still here the information.

We've had all the biopsies and scans now just waiting for the treatment plan...its hopeful to hear your Mum is actually feeling better. My Dad only has discomfort is his stomach, he has lost some weight but that was because he gad an ulcer in his bowel tha perforated. Hes managed to maintain his weight which i guess is a good sign....I've been encouraging him to eat a high calorie diet, but this is now more difficult as he's easily full and the discomfort is becoming more apparent. He's also slowing down but not sure if that's because he has lost hope since we were told they cannot operate.

Yes of you can keep me updated I'd be grateful it does give comfort. I do hope you get a positive result after the first rounds of chemo

X

Please do message any time if you wish, I think it helps a lot to talk to those who are going through the same thing! There will definitely be better days ahead. Hopefully soon, all is clarified for you because the mixed messages regarding the spread or not really isn't okay and only adds to anxiety!

Things will get better once treatment gets started. It'll be very important for your Dad to keep his weight on as much as he can, although he may need to change his diet up a bit and on chemo may fancy different foods but I'd leave it to anyone going through chemo to suggest foods they prefer eating. Smoothies, soups, juices all seem to help as options to have. I hope having the treatment plan will keep your Dad's hopes up and focussing on each day as it comes helps a lot too.

All the best again, I will certainly keep updated and have my fingers and toes crossed for the upcoming scan, everything feels a bit on hold until then and the future is uncertain but it just is the nature of this horrible illness. xxx

Thank you again.

Hes been offered Capox as his chemo treatment but we have to wait another 2 weeks to start chemo no fixed date been given...

The oncologist said the cancer has spread to the abdomin but no organs yet.... I just feel its a ticking time bomb as every day we wait for treatment it's spreading...

We have to wait for further tests to see if immunotherapy can be offered. I'm trying to remain positive but I'm so heartbroken I'm.struggling to see beyond the 1 year life expectancy...

Please keep in touch and I pray you get positive scans xx

Hi, jumping onto your post. My dad just diagnosed on Thurs past waiting on pathology. Consultant said if CT comes back clear for lungs/ thoracic area it may not mean it hasn’t spread (it came back clear….but it seems it doesn’t mean anything). They said due to his age and ill health surgery may not be an option. He’s NJ fed at present and is really low emotionally (Christmas doesn’t help). Hope all is ok with your dad, just frustrating the waiting

Hi Lou.. I can’t answer any of your questions. I’m sorry you’re in the same boat as me. Just waiting..the waiting is awful but have been given some good advice here.. it’s a marathon not a sprint..one day at a time! Milestone by milestone. Th emotional/mental side is killing my dad. Like us the Christmas period has been really difficult…I hope you managed it as best you can. Love to you all x

Hi I was wondering how things are going? Sorry for jumping on. I hope your dad is well. My dad has a rare stomach incurable cancer type (Sygnet cell spread to perinetuim) he has also been prescribed capox. I hope your all ok x

Hi

Hes still on capox, waiting for my way review to see if it has done anything?

How has your Dad responded? X