I knew I should have had surgery

Hi Pamela

lack if saliva at your  stage is usual, even now at just over 2  years mine is around 95% but in occasions I get dry mouth. As for your recent scan please trust in your team they’ve got you this far, it’s good that the tumour and lymph node is showing a marked reduction,In my case I was 18 weeks before I had my pet ct scan , your treatment could still be working hence why they are asking you to wait for another scan. it’s a difficult time for you but please try to remain calm youve  come this far. 

As for your other issues sorry I didn’t get headaches or chest pains have you told your team or contacted your G P ? Maybe a call for some anti depressants may help it’s quite common with head and neck cancer patients to have extra anxiety issues.

sorry I can’t be more helpful but as I said put your trust in your team, the chemo radiation route is the tried and tested route..

Hazel

Good evening Pamela, sorry to hear you are having issues but its surely good news that tumour has reduced in size, due to the reduction it might have made this new "something there" more visible sometimes the scanners cannot see everything that is happening. Without knowing the results of the scan and test they cannot give you a full diagnosis, so it could be nothing to worry about, fingers crossed.

    If it is proven to be something more sinister they might be able to operate due to the fact the swelling has gone down making it more assessable. They have found this early so time is on your side and short wait should not make noticeably worse. Don't give up, you have come this far with great results and I'm sure it will carry on the same way. Its seems a shame to cancel Christmas because of this,in fact, it might help you take your mind off it.

  Im like Hazel and did not suffer those sort of headaches you explained so cannot help with that one. I wish you all the best with your next scan and tests and will keep mt fingers crossed for a positive outcome. Take care.

                                                                                 Chris x

Hi Pamela

At least you have managed to get back onto the forum. Welcome back.

Saliva continues to improve for years and it is still early days so maybe try to encourage the glands to work with xylitol chewing gum? It keeps them producing saliva which I'm sure must help them recover. I can't help with the headaches but I do know stress can manifest lots of symptoms. The chest discomfort sounds like it's gastrointestinal rather than chest but I'm not a doctor so I'm not going to suggest what it could be.

Can you phone your GP?

Alternatively bring it up at your next appointment seeing as they are doing a nasoendoscopy.

I had a positive PET scan at 16 weeks. They found a hot spot at the tumour site of 8mm which is substantial, but there was nothing to see on the scope. I had a biopsy a week later and that was negative 

These scan results are fairly common so try to look on the brighter side.

Best of luck

Thank you all for the wise responses, I think I’m still in shock as I felt so good about everything, pain in throat was all gone, was eating more than pre treatment (I’ve always had issues with eating). We always go to Scotland for Xmas but where my mum lives has a very high infection rate and she has said she couldn’t forgive herself if I caught COVID there so she didn’t want me to come, which I understand but I’ve been shielding since March and not been out.

On a slightly better note I mentioned the headaches to my uncle who is a neurosurgeon who thinks it’s likely occipital neuralgia Caused my nerve damage in my neck so at least not likely to be life threatening.   The chest pain I agree is gastro, I did have it pre treatment, started on the same day as the lump came up on my neck.

I still feel if I’d been able to have the surgery pre treatment I would have felt a lot safer.  Fingers crossed next scope and MRI are clear

Pamela

Hi Pamela 

As the others have said the saliva is totally natural, i am 3 weeks behind you in treatment (not had scan yet) and my mouth is bone dry

Ive also had numerous tum issues from the meds and some heartburn (but no headaches).

Just curious about the operation? were you given a choice? 

I was never given a surgery option they basically said we are doing radio and chemo...but i have questioned it a lot since then.

Hi Trev, thanks for reply. I was told at original diagnosis that surgery was best option and transferred to another centre, I went there and they said no it was too dangerous with COVID etc and they felt I would be over treated as I would still need the RT and chemo, they sent me back to referring hospital. I was really upset at the time as I just wanted rid of it. They did say there was a 20% chance I would still need the surgery anyway, thus why I wish I had pushed a bit more. - the benefits of hindsight 

Pamelav

Thanks Pamela, i think ill ask why surgery wasnt offered to me when i see consultant (prob covid). I have been told 70-80% chance of a cure too.  Anyway i really really hope you get good news.

Trev

Hi Pamela. I can’t answer the question about headaches, but I have been in your exact position regarding scans showing ‘something left’ and wishing I’d had an op. My MRI scan at 12 weeks showed uptake in the neck lymph nodes and the Oncologist said this could be tumour still present, but probably wasn’t - likely to be dead cancer cells picked up MRI. (This is a very common occurence I found out, about 60%, but no one warned me about the likelihood) So I had a PET scan v quickly which showed NO cancer remaining in my neck - but a small hotspot in tonsil which they said was scar tissue and would resolve - it did.

Point 1 - The recommended scan at your stage is a  PET scan - I would ask why you are not having one. 

Point 2 - if they really thought you still had cancer present they would not make you wait 3 weeks for a scope and then 2nd MRI scan in 2 months

Point 3 - I thought just like you - if they are now going to need to do an op to take the lymph nodes out of TMJ neck, why didn’t they do that in the 1st place!! But it turned out fine for me,as I’m sure it will for you. My PET scan was clear, no surgery and 3 years on I’m still here!

Could you ask for another phone call from Oncologist - or ask to see them face to face for a further explanation? I think they would be happy to talk to you in these circumstances and reassure you. You need a clear understanding of what’s going on. PLease ask for more information, and try not to worry - they would have you in really fast if they really believed you stil have disease present.

Hilary

Thanks Hilary that’s really reassuring, I got the date for the mri, 8 Jan, I’ve asked the cns why not PET and they said I don’t know we expected it to be too, they thought it may be because my hospital don’t have a scanner and would have to send me to where I had the original so it would be comparable, so possibly down to COVID restrictions in some way as the other hospital had reduced capacity.  I think I will give them another call next week.

im feeling very anxious at the moment, was looking forward to going up to Scotland for some normality, now I have to have Christmas on my own with the kids, they are wonderful but 5 and 6 and I’m still feeling exhausted. I don’t know if I can do it. I can’t feel myself getting short tempered with stress and don’t want to spoil the magic in anyway. Nearer the time I will try to have a chat with them (they are upset too at not going to Scotland)

Hopefully everything will be clear and we can all get a vaccine soon

Pamela

Unknown said:

Thanks Hilary that’s really reassuring, I got the date for the mri, 8 Jan, I’ve asked the cns why not PET and they said I don’t know we expected it to be too, they thought it may be because my hospital don’t have a scanner and would have to send me to where I had the original so it would be comparable, so possibly down to COVID restrictions in some way as the other hospital had reduced capacity.  I think I will give them another call next week.

I can only add what my oncologist said. Till very recently Swansea board didn't have access to routine PET so HNC patients were evaluated by MRI and PET seems to have made little difference to picking up treatment failure or recurrence. I agree with Hilary that if they suspected anything you would be seen faster. 

And on the subject of nasoendoscopy, that in turn is not as useful a tool as it was thought as nearly all recurrence/failure is accompanied by symptoms anyway.