Hi all...I'm 4 years from my 1a IC diagnosis, full debulking etc. My ca125 has stayed between 10 and 14.
I asked my consultant if I would ever be given another scan , of any sort, as they're not routinely offered with a 1a diagnosis.
Kind of wish I hadn't now, they found lots of polyps in my gall bladder and a lesion on my liver. But nothing in the gynae area...so I'm being referred to a gasterologist now.
I know polyps are mostly benign, but what should I be asking , when I get to speak to the gasterologist? My OC consultant said the liver lesion was nothing to worry about...I think she said it was an adenoma? I wish I'd asked for a copy of the scan report now, am I allowed to have one?
Anyone had similar gall bladder issues?
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Twink333
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First, just to say yes, of course you can have a copy of your scan report, you are legally entitled to any medical information held in your records, but you'll have to request it - I usually email the consultant's secretary and ask her to email it to me.
Second, gall bladder troubles - not sure if I've got obvious polyps, but my gall bladder has a condition called adenomyomatosis and I've had it for years, well before I got OC, and often adenoma type polyps are present with that condition. Polyps, though, are not usually painful and not uncommon; 95% of them are not cancerous. However, as you've had a form of cancer already, the gastro-enterologist may want to test in some way to make sure yours are benign, or to monitor them in some fashion, I don't know what kind of tests or scanning they may use for that. Hope that helps... and try not to worry about them too much in the meantime. Worrying about them won't change the outcome, they are what they are, all it will do is keep you awake at nightand raise your general anxiety levels. You've presumably had them some time, as many people do, without them causing you any problems, so hopefully they are nothing to worry about anyway.
Thank you Miriam, that is reassuring. Yes, I wonder if there's a ca125 equivalent test for gallbladder nastiness. My OC consultant said they'd ask my GP to refer me to gastroenterology ( I swear that word gets longer everytime I type it). I wish the OC consultant could refer me directly, same hospital etc....everything goes belly up whenever my GP is involved. But I'll chase it up in a couple of weeks. I'm sure it's nothing and I feel really well.
That is annoying, that they can't refer you on internally within the same hospital,, but perhaps your hospital doesn't have a gastroenterology department... I know hospitals usually refer back to GPs to make onward referrals because its to do with money. If the hospital refers you internally, they have to pay for the referral - if the GP does it, they have to pay,and its been like that for some years now., since the last NHS shake up by the then new tory government. So much for patient centred medicine... hopefully you won't have to wait long for an appointment, but it rather depends what the oncologist says to your GP and what the GP says to the new hospital, whether its marked urgent or not. As usual, you will likely have to keep on top of it yourself and chase things up.
In respect of bloods to check a gall bladder, the only thing I know about is there's usually a raised alkaline phosphatase level in people who have, say, gall stones or the condition I've got. That blood test is part of the array of liver function tests, and mine's always raised, its the only liver reading that is, otherwise, if others in the array were raised, it would mean something different, like problems with the liver itself. There may be some other blood test I don't know about though... good luck, hope its sorted soon.
Hi. I don’t know if they would do it but a PET scan would confirm whether anything is cancerous. I have a lot of little nodules in my lungs and they did a PET to see if they were malignant and then they routinely look at them on my CT scans. I hope it’s all fine. Xx
Well, I finally got sent an appt for the gastroenterology dept. But it's May 2023....14 months after the polyps were seen on the scan. It seems a long wait? I asked for a pet scan, but they wouldn't do one without a solid reason? I'm sure there's nothing to worry about, but really didn't expect the appt to be so far away.
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