I feel a bit of a fraud joining the group after reading a few of the stories. I was "accidentally" diagnosed with a GIST after being referred to my local hospital for an endoscopy by my GP as I had been experiencing problems swallowing. As part of my initial examination at the hospital, the doctor found a small lump in my throat, and without explaining why, referred me for a CT scan. This revealed a 5cm tumour on the outside of my oesophagus which the endoscopy would not have revealed, so good catch by that doctor! The lump in my neck was an enlarged lymph node.
I have now been referred to a specialist team at another hospital, and am booked to have the GIST removed in a couple of weeks.
I should say, I was told that the tumour is benign, but my constant question is, how can they know for sure without doing a biopsy. The consultant I saw last week admitted that they won't 't be 100% until my tumour has been removed and examined in the lab. Here is my first question, and sorry if it's stupid, have I got cancer or not? Is it only cancer if the tumour turns out to be malignant?
Regardless of the outcome, I am a bit concerned about what happens following surgery. I hadn't realised till last week that they will actually be removing a small part of my stomach (via keyhole surgery). Is this going to affect what I eat, or how often, either short-term or long-term?
Does anyone know what the recovery period is after surgery? The consultant said I will be in for 3-4 days, but what happens after that?
I should probably have asked the doctor these questions, but I've only really been thinking about them since my appointment. I should've gone with one of my friends who is a nurse and would've given the doctor the third degree!
Any advice would be much appreciated.
I think it's a really good sign that the consultant has said that he feels your tumour is beign . Our experience has been that the consultants view holds more weight than a biopsy that came back inconclusive twice in my husband's case.
Its hard not to worry I know, but it sounds as if you are being moved through the process quickly which is good..
Sorry I cannot offer any more advice
Thanks for replying. It's good to talk to someone with experience. Interesting (?) that biopsy results can be inconclusive.
My hubby and I are very different..I totally trust people he needed physical evidence so it was a shock that biopsys can be inconclusive .
Cliffs consultant could tell by the shape and appearance that the tumour was malignant and was very upfront but gentle about what this meant.
Hi and welcome
Of course you have questions that have occurred since your appointment. You weren't expecting this turn of events and during consultations it is a bit like squinting when watching horror films...your mind squints as a defence mechanism so its hard to take in, challenge and recall all that is said.
Things are moving quickly which is good but hardly gives you a chance to re-group...so advice such as yes, take someone with you to appointments, have a notebook in which to jot down what is said and your questions that occur outside appointments may seem a bit redundant.
Also...who knew that living without your stomach is a thing...but it is and you can live long and well and enjoy your food.
In your case it sounds like a partial gastrectomy...and the good news is that where a portion of stomach can remain, those people do better more quickly, so again good.
Rather than write war and peace here, may I suggest you search using key words such as gastrectomy which will bring up posts by me and others with lots of tips re recovery and eating.
Good luck and do keep us up to date with how you are doing, or other questions or when you just need a hug or rant.
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