GIST, but is it malignant. Can't tell too hard to biopsy

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Occasional Contributor

GIST, but is it malignant. Can't tell too hard to biopsy

I'm feeling numb I think.  Tumour found by accident, good.  2 endoscopies later - and 2 months and no definitive answer.  Yes I have a GIST, but don't know if its malignant.  waiting for referral to surgical clinic at hospital, and waiting.

numb, frustrated, lonely - my partner doesn't understand or prescribe to "expect the worst, hope for the best". he is too confident that I will be fine.  but he isn't a doctor, or god for that matter.

 

my tumour is behind my eosophagus so rarer than most other GIST.  can operate or nothing.  pain in chest and back - toughen up princess no pain meds for you.  losing my voice - side effect, wait til surgery.  can't call a help line, coz my voice doesn't work.

 

I'm scared of dying before anybody can tell me what the hell is going on. 

 

apols for the rant, but no body else will listen

 

6 REPLIES 6
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Occasional Contributor

Re: GIST, but is it malignant. Can't tell too hard to biopsy

Bubbly, it is hard, it’s true, but don’t lose hope. I also had pain on my back and my stomach, nothing worked for the pain until they performed a little operation to burn the nerves that were giving me the pain. It came from the pancreas. They cannot operated because the tumor is too close to some vessels, one of them being the aorta, so they expect to shrink it with chemo until they can operated. So far, I have not heard anything negative, which makes me feel calmer.

Bubbly, have faith in God. I was not of the kind of person that prayed, but now I do it very often, and full of faith, and let me tell you, IT HELPS. 
I am not here to convert anybody, I am just telling you what is working for me, I am a Catholic. Before I just was by name, now I really believe, and I know that He will be always with me, helping me.

Sorry for this long testimony of mine, but I just want to help.

God bless you!

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Re: GIST, but is it malignant. Can't tell too hard to biopsy

I feel for you. I'm currently riding a rollercoaster of mixed emotions waiting on answers.

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Occasional Contributor

Re: GIST, but is it malignant. Can't tell too hard to biopsy

Hey Gwen 2019, thanks. I am getting a bit uptight with other aches and pains. Mostly in the chest where the tumour is. My gp must be getting sick of me, but I don't want to take the risk of missing something. How are you doing?

jubbly

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Re: GIST, but is it malignant. Can't tell too hard to biopsy

I just got home from surgery. I'm so sorry about your struggles. I certainly do feel for you. My brother is dying from soft tissue sarcoma. Chemotherapy and radiation no longer working for him. He has graciously excepted his fate. My tumor was removed today. Waiting on test results. How are you doing mentally? That is the tough part.

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Re: GIST, but is it malignant. Can't tell too hard to biopsy

Peace and love to you both
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Occasional Contributor

Re: GIST, but is it malignant. Can't tell too hard to biopsy

Dear Jubbly, I was unexpectedly diagnosed with a GIST on the top of my stomach last July after complaining of pain in my chest and a cough for over 2 years. Blood tests, endoscopy, heart tests were all normal then I followed my "gut feeling" and saw another gastroenterologist at RNSH who ordered an abdominal ultrasound before doing another endoscopy and suddenly I was having this surgery.

It was quite scary not knowing much about it. and when I got the malignant diagnosis I was grateful that it had been found almost by accident before it got even larger or spread.

Because it is so rare I was not given much information and have been doing my own research. It has made me very tired and I am about to try some acupuncture to strengthen my whole system. I still get days when I get quite scared especially before my first follow up scan but mindfulness meditation has helped so much.

Hope you are doing well now. 

 

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