Any medical folk around? Worried and confused:-(

[sprigatito]

My beloved auntie has been unwell for months, her appetite has disappeared and she is living on meal replacement drinks, she is tired all the time and has lost a lot of weight. She has been quite resistant to the idea of seeing doctors etc, mostly because she is so anxious and can't face it. She did eventually agree to see her gp a few weeks ago who immediately referred her for scans, which she had this morning.

I've just had a message from her saying "sadly the tests were positive, it's bad news". I called her and she couldn't really explain what the tests were for or what they were positive for?! She said she had several scans including one that involved injecting her with something first, which sounds like a PET scan to me? Can anyone shed any light on what is likely to be going on here? I've never heard of anyone going for scans (presumably for cancer) and being told the same day that "the tests are positive"?

Sorry this is rambly, I adore this woman and want to support her, but I live 4 hours away and it's really hard not being able to understand what she's telling me.

That’s not enough information. They inject for a ct scan too. Sorry, you’ll need to wait until she gets the official results

I don't know but could she give you access to her medical records, or does she have children with access? 💐

Could be an mri scan where inject you with a dye first? Seems odd getting a ‘positive’ result for whatever it is so quickly though?

Did she definitely have scans or could it have been a scope? That would give immediate results.

If you go for an MRI scan it's usually several scans and whilst you stay in the scanner they usually talk to you through the headphones and say "the next scan will be x minutes" and then there's a short pause before the next one. If they need to inject dye contrast then this usually happens about half way through the scans.
I wouldn't expect to get results the same day though as it's different people who do the scans to who analyses the results (radiologist / radiographer i always get them confused!).
Would it be possible to get someone such as yourself listed on her medical records as a point of contact/ power of attorney type thing then they can include you in conversations if she's so confused?

That's what I was expecting - for her to have the scans, then get the results later when they've been reviewed. But she insists "the tests were positive", and isn't able to tell me what for! It's frustrating. And she lives alone and has no children, so there's really nobody supporting her through it all.

Also, it depends how she’s interpreted positive.
” It’s really positive news”
“This is positive for cancer” ( unlikely to be worded like that), are very different responses.

Would she give permission to her gp to speak with you or attend any follow ups, wither in person or facetime

She probably would, but I live 4 hours away and don't drive for medical reasons. I also have other caring responsibilities and very little spare money, so it would be difficult for me to make a major time commitment like that.

What help do you want to offer, the hospital won't share the results with you maybe best wait till she gets the results so she knows what they found. What does she want you to do.

How old is she? Does someone take her to the scans who you could ask or does she make her own way there?

Also bloody good point from @Maybeicanhelpyou about ‘positive’ being interpreted in very different ways!

I hadn't thought of her misinterpreting the word "positive", that's a possibility! She's just messaged me to say she's seeing her gp on Thursday to get the results...that's also weird to me, both because it's so soon and because she's adamant that she's been told the tests were positive.

I know a friend takes her to appointments, but I don't know them or have their contact details.

It can be incredibly frustrating, especially with you are so far away. Maybe it was 'positive' in seeing 'something' but not an actual result? Did she have biopsies done?
Does she have a follow up with her GP or a consultant? If face time can't be organised, could you arrange to call her, or she calls you during the appointment, so you can listen in/ask questions/support her that way?

Maybe ask your aunt if you can have their number? It’s hard to take everything in when you’re at hospital appointments so having an extra ear listening in is very helpful, they may remember something your aunt hasn’t. (If indeed they do sit in with her and don’t just wait in the car park).

I had tests for swallowing problems and they told me the results straight away. The first was an endoscopy and the nurse went through the results before I left. The next was a barium swallow and the radiologist told me the result, I also had a Manometry and they told me the result so she might have been told. They then emailed the results to the consultant

Ask her if she can call you during her gp appointment so you can listen if she wants that and gives her consent

My Mum’s initial scan results came back the same day - the full results the consultant phoned her with about 3 or 4 days later. I do hope that its a positive outcome for your Aunt xx

That's really encouraging, thank you. Hopefully she's just got the wrong end of the stick.