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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!
Ricoshay I have just read your “Ramblings”
Blimey! I am absolutely in awe. While I made heavy duty of what happened to me you skipped through all your problems in two short entries. Good luck to you and Rick. You deserve to be well and happy and enjoy your ramblings. Merry Christmas wherever you end up.
For some reason I cant start a new discussion - keep getting "Access denied" message, so will post here re my previous posts yesterday re PET results. I had a text from a fellow patient (same cancer/same reatment at same time), he also got his 12 week results in the same clinic yesterday. He had the same result - activity in tonsil area, but they are still deciding whether to biopsy or re-scan in his case. We are now really worried that OH has gone straight to biopsy. I did ring the specialist nurse today and said we felt we needed some more info- as the appointment was rushed and the doctor didn't explain anything. She is getting us another appointment next week with both oncologist and ENT surgeon ( we apparently should have seen both yesterday, but only saw ENT surgeon. She did say they have been considering doing 14 week scans instead of 12 because of the number of false positives.
We are in a real state over this - I know it all depends on how bright the area glows, so obviously my OH had a very hot spot. They did say yesterday that if it did turn out to be cancer it would still be curative - but how? it's my understanding that no more radiotherapy can be given? This is all so so stressful and OH is really worried about a biopsy on an area which is still extremely sore. The scope looked ok apparently. Help!!
I know it’s difficult but try not to panic
As I said earlier I was in the same position. Hot spot on PET/CT
I was in for biopsy 6 days later though everybody was saying that it was certainly a false positive. More surgery is usually what happens with a failure
The fact that your hubby’s throat is still very sore is likely an indication of why the spot was so hot and yes if my experience is anything to go by his throat might well get more sore after biopsies. I suppose it depends how many they take.
I think on balance I would rather have a quick biopsy than wait weeks for another scan. What happens if that comes back hot?
Thanks I'm trying to be positive but really having a down day as we seem to have gone back to where we were months ago. They arent planning to biopsy until after Xmasl so we have to wait whatever. How long did your biopsy results take?
I am hoping our appointment next week may answer some questions. Does the PET just show cellular activity or tumour? We would really like to see the pre and post radiotherapy scans and have them explained. I do appreciate all the support on here, without which I'm sure I would have gone completely gaga!
I had my biopsy results a week after the procedure
Please please try not to Panic
PET scans do not diagnose cancer; they show only areas of abnormal uptake of the radioactive glucose. Other diseases can produce "hot spots," such as infection and inflammation and let’s face it there’s no better inflammation than an irradiated throat.
Beesuit is spot on - a radiation-burnt throat very commonly picks up the radioactive glucose they inject for a PET scan, so shows up as a hot spot.
I would be reassured that they are happy to wait until after Xmas to do biopsy- if they had a serious concern they would be doing the biopsy now.
I had a hot spot at site of tonsil/ throat cancer at 14 weeks and I wasnt offered a biopsy or a repeat scan - they just said they would keep an eye on it! It resolved completely in 3 months (I insisted on another PET then). Have faith. The chances are very good.
That said, it is great that you will have the chance to talk to them all again next week - and I think you will come away much more reassured. I’m sorry you have this uncertainty. I believe that if they were seriously bothered your husband would be having a biopsy immediately.
Thank you Beesuit... Altho there's a bit more to come to be fair, it's very much a work in progress ️
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