Hi all. Hope you are all staying strong.
Had my big MRI results yesterday. Wasn't what I wanted to hear really. Turns out they were inconclusive. Specialist said there is still an area just inside my back passage that is showing a different colour. They are undecided as to whether this is cancer or just scar tissue but obviously I'm expecting the worst. I need to have a proper investigation and a biopsy taken under general anaesthetic. A further pet CT scan is required too. If it turns out to be cancer then they have said I'll need surgery where they will cut everything away including a chunk of my large bowel. This will mean I have a permanent stoma which can't be reversed. Not sure how I feel about this. Could be a life changing thing. Not even sure I'll be able to do the job I do anymore either. Still need surgery to take half of my thyroid away as my windpipe is obstructed and now I'm on bone strengthening medication to try to help my fractured spine bone caused by the radiotherapy!!
A lot to take in. My head is in a spin. I'm trying to think positive but I'm convinced they believe some of the cancer hasn't responded to treatment. They just wouldn't say.
The part I don't understand is that many people here say that they aren't totally clear of cancer until the next scan. If that's the case why aren't they offered a biopsy and corrective surgery? They seem to just wait until the following scan to see if it's gone. Any advice would as always be much appreciated. Michelle x
Hi there Michelle (Michelle75300),
I’m really sorry yesterday’s results weren’t what you were hoping for. You’re correct that some people do have inconclusive results at their first scans & as you probably already know the radiotherapy continues doing it’s thing for some time following your last treatment I think this is why many oncologists have the wait & see approach, also scar tissue showing on scans is really common! I think it’s probably just differing approaches by different oncologists as to whether they go straight to biopsy or not, it seems pretty commonplace in other countries for almost everyone to be biopsied following treatment for AC regardless of suspect areas or not. I think going straight to giving you information about surgery etc., was jumping the gun a bit, unless you asked about the ‘what ifs’ but that’s just the way some Dr’s are! Regarding the stoma as I’ve mentioned in other posts many, many people continue to live full active lives with a stoma. As for the surgery, I know it’s really difficult as with me as soon as something is put out there I need to find out as much as possible about it, but I’d be tempted to sit tight until the biopsy etc., is done, this might be a whole lot of worry for nothing. Has your oncologist put a timescale on the PET scan, biopsy etc.?
The whole journey following a cancer diagnosis and subsequent treatment truly is an emotional rollercoaster isn’t it? 3 years on from treatment I’m still on it & wonder if I’ll ever feel the security with my health as I did prior to this! Most days I manage to push it into the background & cope well then something happens, a painful BM, a bit of blood, maybe a new ache or pain & that worm is in my ear again.
We’re here whenever you need us, even if it’s just to let off a little steam.
Nicola
