Hi Twish and welcome to Cancer Chat.

I know you're waiting to hear from other members who may have experience of this but I just wanted to stop by and provide you with some information we have about this cancer on on our website.

If you have any questions about anything on there and your mum's appointment isn't too early tomorrow morning you can give them a call on 0808 800 4040 between 9a.m - 5p.m.

All the best for tomorrow Twish, we'll be thinking of you and your mum.

Kind regards, 

Steph, Cancer Chat Moderator

Hi Twish,

I don't have that particular cancer (as you say it is very rare) but I do have a different type of incurable and inoparable stage 4 adenocarcinoma cancer. In my case of the gastric/oesophageal junction.

The only practical advice I can offer is to write down all the questions you have for the oncologist and to write down the answers you receive. Apparently most patients remember at most 40% of information they receive verbally due to the stress of the situation. Take as much time as you need, the first meeting with the oncologist is important and the first chance to get answers to many of the questions you will have. I can't really comment about alternative therapies, that isn't a path I've been down, though there are a lot of charlatans out there.

The words inoperable and incurable are pretty scary, I know, but there are still treatment options available to your Mum, I hope she gets enough information for her to make an informed choice.

Best wishes and good luck for tomorrow!

Dave

My husband Mick had that sort of stomach cancer , it is also called leather bottle because the stomach goes like wet leather and does not underlate properly , which makes eating and drinking difficult . Mick was in hospital 4 times with dehydration and had to go on a drip to hydrate him .So you must make sure you keep on top of that and like I did insist that they keep giving her fluids . Mick did have chemo. which keep the cancer stable but did not shrink it . You doctor will propebly dicuss that with you , side effects are not nice but I do believe it gave him abite more time . Mick also got bad diarrhoea and offten did not make it to the loo. The doctor will probebly prescribe forti sips for your mum to keep her strenth up , crushed  ice is good for dry mouths for when the stomach to full. Mick had to have his stomach aspirated every couple of hours after he went into the Macmillon unit for the last 6 weeks of his life,wonderful doctors and nurses .Dont be ffrightened if your mum goes in there they very supportive and you can stop as long as you wont .I stopped over night towards the end . Mick first went to the doctors in September 2014 but due to GPs incompetence he was not given a 2 week appointment to see cancer specialists .Finally in may 2015 we went private for a scan got the diagnosice next day . He past awayNovember 2015. Sorry I cant give you much hope for your mum from my experiance but I hope they can help her in some way .Thats the trouble with rare fast growing cancers not much research goes in to it. You must keep your mums spirits up and encourage her to eat little and often and take sips of water regulaely.Hope this helps you understand what may come.  Used to look at this site every day but not done for the last year so I am glad I went on tonight and saw your post, first time I have put anything on mainly because never seen anybody with the same cancer as Mick .Good luck Iwill think about you

Hi Cornwall,

Apologies for not replying and thanking you for your post sooner, a lot of information to take in, in such a short space of time.

I'm sorry to hear about your husband, unfortunately the same thing happened to my mum and she passed away September 2018.

Sending strenght and best wishes,

Twish

Hi davek,

Apologies for not replying and thanking you for your post sooner, a lot on information to take in, in such a short space of time.

Sorry to hear about your cancer, I hope it continues to remain dormant and hope it continues to be that way.

Kind regards,

Twish