Waiting to find out if it’s a GIST or a lymphoma

Hi

Sorry you had to find yourself joining this group but there’s lots of positive help and support.

I am not sure about the question you ask about a GIST or a lymphoma.

I found it useful to write down all the questions that went through my mind during the early days.  This is the worst time as you don’t know what you are dealing with!

The medical team will do a lot of different tests I had a CT scan, staging laparoscopy and two MRIs before the MDT decided on a treatment plan.

If it helps you can read my Blog just click on my name and happy to answer any questions you have.

Take care x

Thank you so much for your reply,

Until I've had the biopsy they wont know which one I have,I've had regular ct and a pet scan and they have decided it is either one or the other from those scans.

I obviously have got my head around that lymphoma is 100%cancer but when it comes to gist I am very confused as some places say they can act in a benign way,I just dont want to get my hope up too much if the chances are slim.

My tumour is 4.6cm x 3.5,so not massive but also not tiny.i haven't had any symptoms either.

X

Waiting is the worst! When will you get the results?

The main thing is whether it’s spread as that might change the treatment.

I had a partial gastrectomy with chemo before surgery.  Many others on this group had a total gastrectomy.  So keep posting your thoughts and worries!

x

Well they did say that once I’ve had the EUS they wil be able to tell me more that day so that’s something at least,won’t get the official biopsy results for about another month.

I don’t think it has spread as he said as much as my colon is associated,it is just 1 tumour.But then again when I was first told about it they said it was my stomach and my small bowel so I don’t actually know what’s what.

i also panicked when he said there were associated lymph nodes but I’m assuming that can just mean they are inflamed.

my main concern isn’t myself really as daft as it sounds, I’m a single mum to a 20month old and that is what terrifies me,also the practicality of having to have people help me a lot whilst I’m having treatment.

sorry I’m waffling,just so much going through my mind 

x

Hello, sorry to hear that you join this group. I’m not sure about your question with the GIST, as far as I know is cancer but with a better treatment. I had stomach cancer last year I was a single mum of a 3 years old and I’m from another country so I didn’t have family or many friends as I’ve been living here for 3 years now. Don’t be afraid it is not easy but family and friends are usually amazing and can help you lots. Ask for all the help you need during the treatment if you need it. If you want to talk just send me a message. Hope you have the best news soon.

Hi Patypuff,

thank you so much for answering my question.

i went for a biopsy on Thursday and they are now saying it’s on the outside of my stomach( adjacent) and between the stomach and the duodenum.they are u sure whether it is in the lining of the small bowel or not which has now confused me further 

they have said they don’t think it is a GIST. As that would be inside my stomach,but now there are more options of what it could be.

ive never heard of a tumour outside of the organ so I am very baffled as to where it has arisen from ( unless it is in the small bowel lining.

have to wait 3 weeks for the results now.

how has your recovery been from your treatment? 

The waiting is the worst. At least it was for me, lots of patience and talk all you need. 

My recovery was really good, slow but good. I think it is because I stayed positive (and still do) about everything and accept any changes I needed to made with a smile and a joke, seen only the positive ignoring the bad and hugging my little girl a lot. I had a total gastrectomy over a year ago and finished my last chemo post op mid September  last year. 

Hope your treatment goes really smoothly. Enjoy the little things and the time with your family.

Hi

Not sure whether this helps but whilst I was in hospital one of the patients was scheduled for surgery for GIST and was expecting a gastrectomy but when they operated, it was outside the stomach. The rumours were removed and she retained all of her stomach. 

Fingers crossed for you