Advice please

[N-A-58]

Hi all. I hope you’re all as well as can be.

I’m looking for some advice please. Bit of a long story so here goes

Mum, 60, diagnosed with stage 3A OC Jan 2019. 6 round of chemo and finished in July 2019 with ca125 of 13.

It has bounced about from 13 to now 19.

Anyway in Feb she had a scan because of some abdominal issues and pressure in her head and it was clear with a ca125 reading of 17.

My mum went back to the gp about the pressure in her head who wrote to the oncologist and a neurologist.

The oncologist said all was good but she would arrange another scan. My mum left it, this was April time, having only had a scan in Feb.

Anyway the scan place rang today and booked her in for this scan. It will be 3 months since the clear one in Feb. My mum is feeling the same as she has been, nothing getting worse.

What would you do? Go for the scan anyway or leave it and wait for the neurologist?

She is conscious of the radiation from the scan but doesn’t want to ‘look a gift horse in the mouth’ by refusing the scan?

Thanks in advance.

[candyapplegrey]

It's a tough one. I am wary of scans generally although the oncologist tells me it's fuss over nothing. Is it worth trying to chase the neurologist? Is it going to be a scan from the neck down or will they scan her head too? Perhaps book the latest date they can give her?

Sorry not to be of more help.

C xx

[N-A-58 in reply to candyapplegrey]

Thank you for your reply and your help.

We have the referral for the neurologist for the 26th July. I think that’s probably the earliest.

I think the scan is just of the abdomen.

Her 3 month oncologist appointment is 17th June so might get her to push the scan back a week so the results are back in time for that.

[Neona]

I have a scan every 8 weeks on my trial and doctors don’t seem to be concerned. I would get it done.

[N-A-58 in reply to Neona]

That’s good to know. Thank you for your reply. Hope all is going well.

[Floss74]

Please get the scan and ask them to include head and neck. I don't want to be alarmist but my mum had sickness and pressure and became increasingly confused. We thought it was food poisoning and/or dehydration. However, it was fluid build up from brain mets - quite rare with OC but possible these days as more and more people live longer through treatment. Her CA125 has stayed low and there is no sign of disease elsewhere in her body. We've gone through full brain radiation, a round of carbo/caelyx and now navigating niraparib. I'd urge you to go for nothing more than peace of mind. Good luck and I hope it's nothing!

[Cumbrianlass5]

I would go for the scan. It is a long time to wait and worry until July x

[Cropcrop]

I’d be inclined to have the scan, the neurologist will then have a fuller picture (no pun intended) when they see her. Whilst I agree that too many scans can be problematic they are an important diagnostic tool and the neurologist may want one doing anyway so being proactive may be a good thing and speed things up. It’s a bit of a balancing act really but hindsight and regret can be powerful emotions. I’d suggest your mum goes with her gut instinct. I hope all this rigmarole turns out to be nothing of any great significance. Take care and stay safe ❤️xx Jane

[N-A-58]

Thank you all for your replies. Spoken with my mum and she is going ahead with it on Monday.

A little weary because she had her last dose of the Covid vaccine last week.

I will update you all on the outcome.

Thanks again.

[Ruebacelle]

Get the scan