Linitis plastica diagnosis

Hi, welcome to our forum. We can all relate to receiving crap news but I’m not sure if your specific type is common that I’ve read so far. I had to look up that particular type of cancer. I think with this type of news it changes you whole state of mind, sometimes for the better. I was told Japan has the highest rate of stomach cancer so it might be interesting to read what progresses they have made with your specific type. Take advantage of the macmillan staff as well as they will be experienced in advising you about your options. It’s really good that you are feeling well at the moment although I suspect pretty devastated. Maybe allow yourself a little time to reflect on what’s important to YOU. If prolonging your life expectancy is at the top then the chemo could be the option though quality of life is a considered factor. Even if we have different cancers and most are post op you can still get some guidance on eating suggestions and I’m sure at least smile when reading some of our funny stories plus we can be here to listen if you need it? 

Hello, my mum was diagnosed with linitis plastica a few months ago and is just about to start palliative chemo; there was a delay because the cancer essentially made her stomach so rigid that it couldn't move food through into the duodenum, so they needed to try to fit a stent in her stomach first. That ultimately failed, so she has been receiving total parenteral nutrition for the last few weeks. This has helped stabilise her weight loss and has meant she is now a candidate for chemo. She has decided to go ahead with the chemo, primarily with the hope of extending her life but also to hopefully help her feel more comfortable. The cancer is making her very nauseous and has made it so she isn't able to eat or drink. 

I just want to mention this because you haven't said either way in your initial message - has your consultant established whether you would be a candidate for immunotherapy? My mum ultimately hasn't been eligible for it, but if she had been we were under the impression it could help. I'm sure you'll have had a discussion about this but I just wanted to mention it on the small chance you haven't. 

We've also been in contact with a private provider called HCA Healthcare UK, for a second opinion to see whether my mum may be eligible for HIPAC surgery. This isn't available on the NHS as it's quite a novel treatment. We're still waiting to get a second opinion from them because they're awaiting documentation from my mum's consultant. 

Sorry, I appreciate this is a lot of information but I've learnt through this process that linitis plastica is a relatively rare cancer and so there aren't as many people active on chatrooms like this who have experienced it. I've spent the months since we found out my mum's diagnosis desperately searching for information about what we can do, but now we've processed it a bit better, we're just really at a point of trying to do the best we can to help her feel comfortable and relieve some of her symptoms. Cancer diagnoses are never an easy thing to take in and process, but I think it's especially hard with something like stomach cancer that can really start to impact your day-to-day life, and your comfort and nutrition.

I imagine you're probably still totally reeling from the news you've been given as well, having only got your diagnosis a few weeks ago. If I could go back to the beginning of my mum's journey with this and say anything, I would urge all of us to get in contact with support services like Macmillan, Cancer Research UK, and Maggie's Centre sooner so we didn't feel so isolated and overwhelmed. If you feel up to it, I would really encourage you to contact them, especially if you just want to have a chat with someone about what you're going through that you can literally say anything to - I know my mum has been apprehensive at times to be completely open with any of us family members about how she's feeling because she doesn't want to make things worse for us. All the best xx 

Hi,

Firstly, my thoughts go out to your mum. I'm 49 and in a similar position. I've been diagnosed with Linitis Plastica which has advanced into my peritonium.  May I ask what route you took with HCA? I'm looking to do the same however I'm not sure where to start as much of the HIPEC pages reference colon cancer.    Thank you.

Like you mine has advanced to peritoneum and was told I wasn't eligible for surgery.  After 5 rounds of capox the cancer has regressed , although the ctscan isn't clear so they unable to say by how much.  However I have regained weight and eating normally again. My cancer HER2 POSITIVE  qualified for targeted therapy herceptin .which seems to be stabilising the cancer . I receive this treatment every 3 weeks with ctscan every 3 months .Next scan in June