PET CT scan results.

Ffi said:

I did at around the same time as the scan appointment card receive an appointment letter for a telephone consultation with my new oncologist, original one now left, but this is for mid January! They're not going to make me wait till then are they?

They might unless you push it.

Covid seems to have forced us into being even more proactive than usual.

I had to wait five weeks for my results but in retrospect I could have done something about it......and that was last year.

You could do two things.

Ring your new oncologist's secretary and ask her to expedite things and contact your CNS by phone rather than email.

Whereabouts are you being treated?

Oh my word Dani that was what I was fearing most as if there is something going on still I sure don't want to have to wait such a time to find out. I'd be a mental case before then. 

Surely Covid cannot be the ONLY thing that matters now! Granted it is very very important but a phone call?! 

I hate to make myself a nuisance to these people as well as not least I suspect this would be held against me somehow. Sorry state of affairs. 

I am based in Snowdonia so Betsi Cadwaladr!! Went to Wrexham Maelor for the scan which was situated in a touring mobile unit. The staff were so lovely. 

I tend to email as I often have issues with using the phone at the moment plus I do find the tracability of an email somewhat reasuring usually but yes I shall contact oncologist's secretary now. Good call so thanks! Xx

Ffi said:

I hate to make myself a nuisance

That is the single most thing I meant by being proactive. We have to take these issues into our own hands or we can be left behind. Not all health boards are the same. Swansea are exceptional and I have had nothing but excellent care from The Morriston, The Singleton and my oncologist but I have been lucky and I have heard some real horror stories.

Let us know how you get on.

I know, my brother and family are also over there and they can be amazing. They have nothing but good things to say about them.

That said ours can be equally amazing I'm sure, it just seems that certain areas, backup services in particular in this instance perhaps, don't always cut it which can make all the difference to patient experience and wellbeing. 

I realise now, much to my consternation just how nieve I've actually been during this whole affair. For despite the trust now being in their 6th year of special measures with huge amount of money just announced again coming their way, I must have had this rose coloured view of how things would be.That I shouldn't worry about a thing other than getting on with things, getting better, getting stronger.

Stress and having to do battle was not something I had bargained for but things have certainly changed since the last time I needed to access services. Sign of the times. (Sigh)

Thanks again Dani, you're very, very kind you know! Xx

Hi Ffi. Even in these Covid times they will not expect you to wait until mid-January for your result. I was booked my scan (a useless MRI which didn’t give an answer)and I already had the appointment for the result, 10-14 days later. Sorry that’s not the same for you. Scans have to be reported and then must be discussed at the MDT meeting before you can be given the result. This makes sense as, although the vast majority of scans are clear, the ones that throw something up (often a false hot spot) need to have that something discussed by the Team and a plan agreed on. They are more likely to be responsive to you once the scan has been discussed. So I would advise, as Beesuit says, to contact the CNS and/or sec, but after about 10-14 days from the scan. You may find they have contacted you by then.

A note of caution - many PET scans at the 12 week mark show a hotspot at the site of the original tumour - the scarring from treatment, not yet completely healed shows up. This is very common and will resolve - it’s treated differently by different teams. My team ignore it and tell you it will go away, but others want a biopsy to check. I don’t tell you this to worry you any more, but to be reassuring if that happens to you. Many on this site have had to go through a biopsy after a PET - to find it is just scar tissue. This is a truly awful waiting game that you are now playing, knowing your result is out in the world, but you don’t know it. All I can advise is to keep really busy and be positive. We dwell on the bad what-ifs, when we should dwell on the most likely outcome - a clear scan. If sleep is a problem, don’t be afraid to ask GP to help. I took sleeping tablets in the run up to my scan result as I coped really badly, didn’t really keep it together!! All good in the end and here I am 3 years later....

Ask to be informed of your result, once discussed by MDT, and sorry it’s such a jittery time

Hilary

Hellebore you are spot on. Lots of us have hot spots. Mine was biopsied. I haven't heard of anybody have treatment failure that early but the worry can be so overwhelming.

I think a lot of trusts are edging towards 16 weeks now to try to avoid it.

Talking to lots of folk I have come to the conclusion that the worse your reaction to RT the more likely you are to take longer to heal and the more likely you are to have residual activity on PET/CT

Ffi said:

Thanks again Dani, you're very, very kind you know! Xx

Awwww shucks!

Just trying to help out 

I can't speak for the Welsh NHS, but in England they do seem to be on top of it right now, and for some months previously. 

As already said I would expect the PET/CT scan to be discussed by your MDT before you get the results.  My last one went to the local MDT then the tertiary MDT and then I was called in.  About 2 weeks in total.  Like you I have to travel long distances so I would like to have had a phone consultation to be told "nothing to worry about".  I still have a hotspot 9 months late that they are sure is an infection as a result of the MDT discussions.

I have found my clinical teams to be proactive, rather than reactive, in calling me in for a check when they have seen something going on with my clinical care elsewhere in the hospital - just to be on the safe side!

You will never be regarded as a problem patient if you want to nudge things along a bit by ringing up and asking.  Sometimes the "system" lets the hospital down and you need to get things back on track.  This is YOUR treatment so you have the right to take control of it (working alongside your clinical teams, of course).

Give them a call and here's hoping everything is clear.

Ahh thank you ALL, Managed to lock myself out today from using a different device! Still waiting for a password reset email, it's been hours.  Sister borrowing my phone (where I'm auto logged in) again now as hers is caput and she needs it for late shift care work.  I'll reply in full, as is my wont , at some point tomorrow. Hope you have a good evening xx

Hi Fi as Daninsays Ben pro active I ve just had to battle to be put back on the cancer clinics due to a bean counter demoting me.I did it by email like yiunsay it leave a paper trail. My scan was 4 January 2019 and results 14=January 2019 ,once results are in a m d t meeting will be arranged and yiu will be discussed. Know my hospital is now doing results by zoom not ideal at all.I was obviously pre covid and the oncologist had the joy in putting his arms round me and showing me a piece of paper that said the tumour has completely responded to treatment it was a surreal meeting. Everything crossed for you but please chase them up.which ever way makes you feel happier doing but do it,

Hazel xx