Abdominal/Stomach GIST - Just Diagnosed

Hi Anne15.

My husband was diagnosed with a GIST after collapsing twice in 10 days. It’s now week 5 of knowing about it. Luckily he has already been to Addenbrookes for an endoscopy and had a biopsy done last Thursday. He is waiting to hear about what the biopsy reveals what type it is and how they are going to treat it. He has also had 24 litres of fluid drawn off his tummy as the GIST internally bled. At the moment all we know is that his GIST(nicknamed Gerry) is close to the greater curvature of the stomach. How long have you known and believe me you are not on your own. 

Regards

Sam

Sam

Thank you for your reply. It helps just speaking to someone who understands. I am sending my thoughts and hugs to you and your husband.

I was diagnosed with what they thought was a pseudocyst in my abdomen area after blacking out and it got very large as I awaited treatment. In the interim I took very unwell and ended up in hospital with Sepsis as the pseudocyst became infected. During this time biopsies were taken and now, some three weeks later I got a diagnosis by telephone. I will not see my specialist until the 9th of June. I have an upper thorax CT scan on the 7th. It was during the telephone consultation that I was told of the possible treatment and I am now dreading this upcoming appointment. As yet I have no idea exactly where or how much of it is attached. It is still fairly large.

I hope you hear some positive news soon. The waiting is so challenging but then I am also dreading knowing too.

If I can offer any support to you both then please keep in touch. My family and friends have been amazing but there are still dark moments.

Kind Regards

Anne

Hi Anne. Ian has had an ultrasound and they have worked out the size to be 16cm x 17 cm x 18 cm. During the first 2/3 days Ian and I were automatically assuming the worst and that he was going to die. The amount of emotions you go through are varied. I don’t know if you have Facebook, if you do there are groups on there for GIST survivors just like you and my husband. I don’t know if that is anything you would be interested in. Also are you seeing a GIST specialist at a specialist hospital. As we live in Cambridgeshire, Ian’s GIST specialist is at Addenbrookes.

Anything we can do to help and if you want to chat that’s ok with me.

Thank you for that information. I will certainly join the Facebook group.

We are from Scotland although live in London. Believe it or not, despite my pseudocyst diagnosis and appointment down here at Kings Hospital, I took ill/Sepsis when visiting my daughters in Glasgow. As a result I will continue my treatment at the specialist unit there who made the final diagnosis. I think being at home with family and friends is best. 

Keep well.

Regards

Anne

Hi

I was diagnosed with GIST in June 2019. I’m treated at the Royal Marsden. Due to the size of the tumour I was prescribed Imatinib to try and shrink it before surgery. It did shrink by about 30% and I had surgery last August.  I had a total gastrectomy and although it’s not ideal, living without a stomach is nothing like as bad as I thought it would be. I just need to eat little a few often. There’s a Gist Cancer website with loads of info you might like to look at, and a friendly email group of fellow “gisters” you might like to join - between us have bags of experience of living well without stomachs, bits of intestines etc,  - gistcancer.org.uk. 

Wishing you all the best.

Blossom

Many thanks for sharing your experience with me and I truly think you are inspiring.

I have started on Glivec now as the tumour is wrapped fully around my stomach. I pray it shrinks. 
I take it you were on Imatinib for around a year before surgery? Just trying to manage my thoughts and fears on it all. 

Excuse my ignorance but what should I search to get to the email group of ‘gisters’, that you talk about? It sounds very supportive.

I have one burning question if you could help? Will this mean the end to ever eating out with family and friends? 

Keep well

Kind Regards

Anne

Hi Anne, 

It's good that you're on Glivec, it should work. Some people have really dramatic shrinkage, hopefully you'll be one of them. My tumour shrank v quickly once I started on it, and within 2-3 weeks I felt much better. It plateaued after 6 months, but it varies. I  would have had surgery after 9 months but it was postponed due to Covid, which I was in agreement with, so it was 14 months from when I was diagnosed. The wait was good for me, I had time to prepare for the surgery and felt well, and enjoyed my food! I had a few side effects from the Glivec but they got better after the first 3 months.

To join the email group you need to go to the gist cancer website, click on the About section in the menu and then Register. There's a short form to fill in and one of the questions is do you want to join the email group. It's a small charity run I think almost exclusively by volunteers who have experience of GIST but from memory I was added to the email group v quickly.

As for eating out with friends, you will still be able to do it without a stomach but maybe not a three course meal . I've only recently started eating out (would have been sooner if it weren't for Covid...) I choose something small, or ask for a half portion, or get a sharing plate. If you only need a partial gastrectomy I think it's easier to eat more as the remaining stomach expands over time. There are a couple of good booklets on the gist cancer site Eating after GI surgery and No Stomach?, you can download or get them posted.

One question, are you being treated at recognised specialist site for GIST? One that has a sarcoma MDT and treats a lot of GIST? It's a NICE recommendation because it's so rare and if you aren't you really should ask to transfer. In London it's the Marsden or UCL, and the Beatson in Glasgow.

I know how scary it is getting this diagnosis, but try if you can to stay positive. We are v lucky that Glivec works so well usually, and in my experience the specialist sarcoma teams are brilliant.

Take care

Blossom, I cannot tell you how supportive and encouraging your message has been. I feel much calmer. Thank you so much for taking the time you have to share such valuable information and personal experience with me.

I am under the care of the team at The Beatson in Glasgow.  I am right at the start of this journey and they have been great.

Over the weekend I will get myself signed up for the groups you have suggested as I know it will help me.

Can I ask one more question please? I am quite fearful of loosing lots of weight after the operation. Is this something that is a given? I hope you don’t mind me asking.

Take Care

Anne

Hi Anne

Yes weight loss is a given after gastrectomy. I saw a dietitian at the RM soon after diagnosis and was told that ideally I should go into surgery with a BMI of between 25-30 as I would lose weight afterwards and it would be difficult to regain it. I have always been overweight and so for me that thought wasn’t scary. I gained 1.5 stone in the year I was waiting for surgery and lost it all straight afterwards and I’ve lost another stone since. However I still am overweight, so I’m not bothered about continued gradual weight loss and neither is my dietitian. My experience does not have to be yours.  You will be monitored pre and post op and there are nutritional supplements if you need them as well as adding extra calories to your regular diet. It might be a good idea to ask to see a dietitian for advice now if you’re worried.   And, be prepared for eating and drinking enough to be your main ‘job’ after surgery, it’s a bit of an effort especially in the early weeks/months but you do get used to eating little and often. 

if you’d like to talk, I will give you my number if that’s allowed on this forum.