Good vibes

Hi Brandy Girl

your husbands experience sounds very similar to my husband in relation to the treatment. 
I asked a while ago for a pet scan for my husband but they seem very reluctant even though many centres seem to be doing PET scans as a normal part of the process. As you say it seems very much a post code lottery which is disappointing given the NIce guidance that is available. 
hope you get the scan and the results show good news for you both. 
Hope we both get good news in the New year!

L

Thanks Rob , always helps to hear others experience 

L

Hi Hazel

thank you! Will keep positive thoughts ! I’m very hopeful!

L

Hi Brandy girl

so sorry your consultant was off hand it isn’t fair ok they may see people daily but at that moment in his day you are his patient. 

My oncologist was brilliant at Leeds cancer centre on first day he explained everything that would happen even that we would be waiting 16/7 weeks for final pet ct  scan as he didn’t want false positives showing if it was done too early. So if mri with contrast is what yiu will get do try and get it done later rather than sooner if waiting a few weeks longer gives you peace if mins it’s worth it. 

Pleaes hubby now at 10 weeks m remember the h o v diagnosis does give us head and neck patients that extra positivity, 

if any consolation my local ent appointment last week ( now back  at local level ) consultant wanted to see me 11 Feb next year ok I though . So imagine my surprise this afternoon when postman delivers nhs letter Cancelling my 11 Feb appointment with comment we can’t offer you any further appointments At this time. .Ummm git anither 4 years of this !!

Best wishes and keep positive 

Hazel xx

Hi.

My husband got his PET scan results today. Not entirely good.  His lymph node has gone but tiny hot spot where his primary was (L tonsil - which was removed) He still has a very sore throat.  ENT surgeon did a scope and said nothing looks suspicious but to be sure they will have to do a biopsy after Xmas as it was a bright hot spot.  The Consultant said he  has a lot of ulcers in the throat on the scope.  I asked if it could be a 12 week false positive and he said hes quietly confident it is.  But if that's the case why did they not just suggest a further scan in a few weeks!  He said they have to be sure but if it was cancer it would still be curable.   We had pinned so much on a clear result and I so wish it had been done a few weeks later.  My mind is in overdrive and I dont know how we will get through the next few weeks.  Has anybody else had this?  

Hi  don’t stress , I haven’t but my oncologist did say it’s quite common if pet ct scan done too early. With mybscan date being 4 January we did ask if it could be done earlier prior to Christmas and to be honest he was right it out for that very reason I was 17 weeks. By the time mine was done. Going from memory the figures he quoted to me was 60% come back if done early . So take comfort from his words quietly confident. Just remember how far yiuve come since the early dark days. 

Sending hugs Hazel xx

False positives are really common at 12 weeks. Some hospitals are now routinely doing PET/CTs at 16. 
I had mine at 16 and it still showed a hot spot. There is a protocol in place for this and taking biopsies is part of this protocol. Wait and watch is too risky. Having said that I was in exactly the same position as your husband. I reacted badly to the radiation and my throat being badly ulcerated took a long time to recover which is why it still took up the radioactive glucose. On the scope my throat looked good. My biopsies were all negative. I’m sure your hubby’s will be too so try not to worry.

Good luck. 

Hi. Sorry this is proving to be so stressful. I had the same - a hot spot in tonsil area on 14 week PET (after an indeterminate MRI for neck at 12 weeks), but I was strongly reassured that this was likely to be scarring from the chemoradio. They didn’t offer a biopsy and said they would just evaluate the hot spot area at each appointment - I then pretty much insisted on a repeat PET 3 months later which was entirely clear. I think the docs are in a difficult place - if they scan everyone later than 12-14 weeks, the occasional patient who has not responded to treatment and still has cancer will be left with disease for longer, risking their overall survival. But by doing an earlier PET they know they will have many false positives in area of original tumour which causes a lot of anxiety to us the patients. What’s the right answer? So please be reasssured that hot spots in tonsil region are common and will almost always resolve - you have the additional reassurance that there is nothing to see that is suspicious.

Easy for me to say, but relax and look on the bright side -its highly likely to go away as the scarring heals, you will not do any good by dwelling on the small chance that there is more disease, and you cannot change the outcome. They do know what they are doing ( mostly). The neck lymph node is the real issue at this stage - and that has gone Hooray! Dwell on that and enjoy Christmas as much as you can. Get zopiclone for sleep if needed and maybe try to access some counselling or talking therapies - I was never one for such stuff.....until scanxiety set in and a counsellor was very very helpful. That 3-4 month post-treatment time was a horror for me so you have my sympathy. But now I’m more than 2 years post-treatment and leading a pretty normal life, punctuated by the odd treatment effect!

Best wishes to you both,

Hilary

Thank you all so much for your reassurance.  The consultation was pretty rushed (end of day at 5 45pm) and we were not shown the scans or able to ask many questions.  Husband has done so well throughout the treatment and we were quite confident of a good result.  We didn't see an Oncologist - just the ENT surgeon, and one we had not seen before.  OHs throat still very sore and ulcerated so maybe this is why there was a take up there?    In any case nothing we can do now but wait, hopefully 2020 will bring good news  x

Morning all

I wanted to update with our results and have just read all the posts above and can't believe how poor some of the experiences are. We sometimes feel rushed at NNUH and MDT appointments are often late but they are always kind and take time to answer questions.

We have been very fortunate and OH results are all clear. They'd like to see us in 3 months fora review but this is not possible, so the ENT chap has told us to let him know where we are in the world at that time and he'll try to hook us up with people he knows for a quick check up, which is amazing.

The day after our appointment, as planned, we started our journey south. On Friday we took the Eurotunnel and we are now working our way across France to the Alps where we will work the ski season. It's been touch and go but we were determined that we were going to return to the mountains for the winter.

OH is still experiencing a dry mouth and taste issues but the soreness has gone and he has more energy day by day. 

For those of you still in the midst of treatment, try to stay strong, make sure you have something to look forward to, and use this site, friends, family and anyone who offers for all the support you can get - we have always been very independent but cancer certainly changes that! Good luck to all those awaiting results, I'm sure they'll come good over time. We'll be lurking around the boards and pop in for a chat from time to time but the next 6 months could be very full on!

à bientôt!

Ricoshay

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