Hi, I’m new here. My mum has GIST cancer, the tumour she has is inoperable, so she has been on chemo tablets over the past year. She has been messed around by doctors and other professionals so much. Anyway, the last chemo tablets she was on, stopped working, so she has been without any treatment for over 6 months, and all this time, this thing is growing inside her. I don’t know if anyone has ever heard of a Doctor Jones? He is based in London. My mum recently has been admitted to hospital because she has an infection, they did her a CT scan of where the tumour is. She is in a lot of pain. Doctor Jones from London, says that he does have another chemo tablet my mum can go on, but she has to go all the way to London to get the tablets, why she has to go all the way down there from skegness, all the way in agony, I don’t know. But even when she does get there, he might still say “no” your not fit enough for the tablets. She has an appointment next Thursday down there. Now, are Macmillan trained to look at my mums CT scan results with her, so they could give her an idea on how much this tumour has grown, and weather or not, this doctor Jones is going to allow her the treatment, as he said, if the tumour has grown too much, he won’t be able to help her. Because it’s going to take a lot out of her to go all the way down to London, and if he says he cannot help her, it’s going to be a right waste of time for her. Please can someone give me some advice, it’s so fustraighting.
many thanks
Hi and welcome to the Online Community, although I am always sorry to see folks finding us and so sorry to hear about your mum’s diagnosis and your ongoing challenges.
I can’t make any comment about any consultants but from my 21 years cancer experience all my CT scan interpretation and reports were only done by my consultants with my Macmillan nurse as an emotional and clinical support.
But you may want to use the Macmillan Support Services as this provides lots of support and information. The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00 have a look by Clicking here for more information.
You can also email them, use the online chat and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
A cancer diagnosis brings a lot of confusion, stress and many questions but talking with other people who are on the same type of journey helps a lot.
The Community has various cancer specific support groups so can I direct you to our Stomach cancer group as this is the place where you will connect with others walking the treatment journey both as patient or family.
Follow the link I've created above then choose ‘click to join' when the page opens.
You can then introduce yourself and post questions selecting '+New' or '+' (depending on your device) you can also join in with existing discussions by clicking on 'reply'.
You may also find our Carers only, Family and friends and Supporting someone with incurable cancer groups a great benefit as you will connect with others supporting family through their cancer journey.
All the very best.
