Gist diagnosis on Monday

I got diagnosed on Christmas Eve and hoping to get a larengetomy next Friday I am still trying to process everything as well I hope you get through this difficult time  

Thank you so much,you too. My local hospital want to operate next Friday also but MacMillan are telling me to go to Christie’s for a second opinion as they are experts in this field.Really difficult when you hear the c word.Thank you for replying.All the best.

Hi one of our support group members had a large gist. She might be able to help in a support group leader and you are welcome to join our sarcoma support group or if you go into the sarcoma Uk charity they list all the sarcoma support groups on their site you might see one more local to you that can help. Also you can call sarcoma Uk helpline for advice too. 

Hi Lottie

thank you for your reply.

My local hospital are making me feel dreadful in asking for a 2nd opinion from Christie’s Manchester.

I have been very reassuring about my local hospital and told them that I had been advised by MacMillan/GIST Uk and Sarcoma Uk to refer my case to Christie’s because GISTs are a rare form of cancer and this is what the NICE guidelines say.

My MDT nurse said she would speak to my consultant but what I was asking for was very unusual.

I feel quite low with that response.My local hospital wanted to operate next Friday to remove the tumour.

I feel now in the middle of local hospital and helplines and don’t know who is right.

Really struggling.

Sue

I know there is a surgeon called Peter Chong who seems to do all the gist operations and is highly recommended by a lady in our group who had a huge GIST.  Look him up  

I am also asking for 2nd opinion for myself  and my local hospital are very supportive so you do what’s right for you. 

Thanks Lottie

I will look up the consultant you mentioned.

Yes I’ll hang on in there,not looking forward to their response though on Monday.

Good luck to you in your 2nd opinion as well and thanks so much for replying.

I notice he is in Scotland so that might not work for you. I think the question to ask at tour apot on Monday is how many sarcoma operations the consultant at your local hospital has performed ? You need someone who had a good experience of operation on sarcoma. 

Thanks Lottie,

Yes Scotland is a bit far for me,I live in Staffordshire.But Scotland is a lovely place to live.I’ve always wanted to move up there!

I will ask the question thanks.

You have been really kind.

Hi Suki63, just wanted to say hi as my husband also has GIST and I’d recommend contacting the charity GIST UK, they have a website and helpline. They also have an online forum via email and it’s a great place to get advice. Under the latest NICE guidelines you are entitled to request treatment at a GIST specialist centre, as you’ve said. However I appreciate the difficulty with the reality of doing this, but important to know that it is your right and your health. Best wishes.