GIST .... apparently!

Since writing the above post on the 20th August I'm literally no closer to knowing what's going on.

Due to the DVT/PE on 7th Aug I'm on bloodthinner tablets, however have to stop those a few days ahead of any procedures and switch to daily injections instead. Cue swollen and bruised abdomen. 

28th Aug I had a CT guided biopsy - which came back as "sample did not survive the process"  what on earth does that even mean! Wasn't told this till 2 weeks later. Also told that the sarcoma MDT don't want to discuss me till there are any biopsy results so bounced me back to breast cancer team

8th Sept - Post surgical breast wound started weeping (its not the only one!!!) fat and blood, then just bright blood. Breast care nurses said not to worry! Probably not healing as well due to blood thinners. 

16th Sept - PET scan from base of skull to mid thigh.  Showed that lung nodules have slightly grown since 8th August, cyst on left ovary (opposite side to the GIST) and a fatty liver,  GIST a little larger, but could just be the angle etc, no additional areas to be alarmed about.

18th Sept - My second Abdominal CT guided biopsy, no more fun than the first but at least I knew what to expect. 

24th Sept - Different area on breast opened up and weeping, so GP put me on antibiotics incase I've picked something up!  Feeling pretty low.

25th Sept - Hear that the second biopsy failed as well, so now waiting to get a date for a laparoscopy biopsy .... got an appointment with Lower GI consultant on the 16th October, no idea when the surgery will be.  

2nd Oct - Started my Zoladex injections, went in to see the nurse at my GP practice for this and no where on her screen was she aware of any of the above. She asked me if I'd tried Tomxifen and why was I switching to Zoladex.  

So, today marks 8 weeks since the GIST was first discovered and we are still not a single step forward with a firm diagnosis or treatment plan. I've just got a swollen & bruised tummy and anxious mind.   Oh and my appointment with the haematology team to discuss my blood clot medication has been pushed back from 1st Nov to 16th Dec, due to staff shortages after 31st Oct. 

It really worries me that none of the medical team can see my previous history and I'm having to retell EVERYTHING to everyone who treats me for anything. I'm worried that I might forget to mention something that's more important than I realise. I've taken to carrying my 'cancer note book' everywhere!

RS

Hello Rolingstone, 

I’m new to this site and have been looking for someone with experience of GIST. I was sorry to hear your plight, and wondered how you were getting on? 
my daughter has had a possible diagnosis of a gastric GIST and waiting for the results of biopsies before Specialist Sarcoma Centre involvement. 

Hello there,

well after two inconclusive biopsies I ended up having surgery, the plan A was to remove the growth but the surgeon found it was more entwined with my intestines and up against my pelvis than previously shown so would involve more of a bowel resection. Instead he took just 1/4 of it and closed me up.  Found out a week later that it wasn’t cancerous so they’ve left it in place while it doesn’t cause any adverse effects on my digestive system.  So from early August to late December was being told it was most likely a GIST and the sarcoma team not getting involved until got firm biopsy results, then found it wasn’t, great relief of course so now monitoring the tumour via scans every  year, just in case. 

Good luck to your daughter 

RS

Hi, my brother has Gist , but they can’t operate. Thought you Cold contact Sarcoma Support UK for some information,0808 801 0401  10 am,- 3pm.

I hope by now you would have had good news, wish you well xx

Hello Kadenza,

Thank you for your kind response and I’m very sorry to hear your brothers GIST  is inoperable.

My daughter had a partial gastrectomy. There was a catalogue of disagreement between local consultants and GIST specialists regarding an issue with her liver. It felt like my daughter was in limbo and at the mercy of the multi professions. However she has a lovely oncologist and gastroenterologist now and has recovered from the initial op. she is due for a 3 month surveillance scan in 4 weeks time and like many folks say on here, the waiting for results is a torment.
I hope your brothers condition is suitable for  targeted therapy? 

Wishing him well

regards 

Hi lindy115,I hope things are going well for you.  My Brother was on Targeted Therapy but he could not cope with the side affects, So he has stopped taking it. He seems to be coping on and off. But it’s nearly a year and he was told that’s all the time he had. He had a CT Scan a couple of weeks ago, just waiting to find out if things have changed.  I Pray things have changed for the better. I wish you and your Family all the very best outcome for your Daughter.

Wishing your Daughter well. Take Care and keep away from Covid. Regards  xxxxx