3 month review - Right tonsil cancer

Hi Linda  The scope is the way we are=checked for the next 5 years sorry, I’m lucky I’m fine with them and my ent consultants are pretty slick. I did have a pet Ct scan at 4 month to confirm the cancer has gone ,but likewise I know some trusts aren’t routinely scanning. The way forward in years to come will be a scan at the end if the first year. 
It’s also routine for oncology to discharge you as imagine if everyine saw  oncologist all the time they wouldn’t have enough hours in the day to see new patients. A few trusts do keep a yearly oncologist appointment I’m one of the lucky ones I still see Dr a Sen yearly but he doesn’t see everyone. 
It’s getting more likely that it’s a case of the treatment has an excellent track record and as I’ve been told we woukd know if something was wrong before a scan picked it up. Know it’s not the best news and personally I think it’s unfair not to be scanned I woukd ask consultant when yiu see h8m don’t take the workd if the nurse. You can ask if you could opt out of the scope, but again I personally wouldn’t want to. My scope found a benign cyst on my vocal cord 2 years ago. 
In a few years time it’s possible that patients will be in a self referral and check themselves protocol. Both Dani and Inwere involved in the early planning stages if this protocol. It’s called pet neck 2 

hugs Hazel 

Thanks Hazel,

I get oncologists can't see everybody all the time, wouldn't want to really. It just seemed a bit half baked, just to have a peek and say 'yeah that's all good'. But, I will go with the flow and put my big girls pants on for the scopes ... thought I'd got away with nasal tubes by managing to eat! 

It's not like the tv ads is it, with a lovely friendly oncologist showing patients before and after pics then hugging them ...false advertising!

Thanks again. No doubt I'll be back

Linda 

Hi Linda I totally agree like I said I was lucky  my oncologist did tell me my results and he gave me a big hug.I think it’s unfair that the oncologist doesn’t get at some trusts ti tell the patients face to face that the treatment they carefully planned worked out. Son in advance here’s a big hug from me to yiu. You’ve come a long way. I did have one consultant who didn’t scope me she did a tongue yank ,which involved wrapping a piece of gauze round my tongue and yanked it to one side. She was very old school the nhs had brought her out of retirement thinking about ut brings tears to my eyes it was pretty painful !!!

hugs Hazel xx

Ooh err, think I'll put up with a scope. Hopefully, they won't be as ham fisted as the last lot!

I'm so unlucky with medical people,  and I very rarely go unless I feel really ill because after being diagnosed with Lupus at @ 20,  every GP said 'its because of your Lupus, you'll have to learn to live with it...every time! One GP after weeks of saying i had a chest infection, told me to go home,  lose weight and stop smoking,  which I thankfully ignored because I knew something was wrong. When I insisted on seeing a different doctor, he sent me straight to A&E with a letter, within half an hour I was on a ward and diagnosed with multiple blood clots on my lungs! 

I should have known having cancer wasn't going to be text book for me  

Thanks for your help again

Linda x

Hi Linda, I only saw the Oncologist once, that was with the ENT consultant, to be told what my treatment was going to be. All my check ups were with the ENT consultant. I did have a MIR scan after 12 weeks, to see if the treatment had worked. I'm sorry you feel you don't trust your team, they should be there to reassure you. Please try to have the endoscope, if you can, I'm sure it does help them to see what's going on.

Ray.

Hi Linda

Visual examination is by far the best way to detect our cancers.  The scans really only aid in planning the cancer treatment with the possible exception of the post treatment CT/PET scan sometime in your future.  3 months after treatment is probably a little early for that particular scan (and not everybody has it).  I had mine a 6 months.

When mine returned it was the scope that found it.  After the biopsy positively confirmed it, the tumour did not show on any of the planning scans.  Again a physical inspection saw me once again having a panendocopy/biopsy last October.  This time it was a false alarm.

I hope that puts your mind at ease a little.

I can only get the scope down one nostril as the other is very tight.  I find that some paracetamol about an how before helps - not that it is painful, more uncomfortable - also sniffing hard helps open up the nose and gets it down.  I know which clinicians I trust to do it and which I now tell to go and find somebody else to do it!!

Thanks Ray, unfortunately I have only had 1/4 of a team all the way through treatment and it's been a nightmare getting hold of anybody. But, I survived and found out yesterday I now have a dietician. So, by the time of my appointment next week I will have a full team again for the first time since before treatment. To be honest, I'm too shattered to care!

I will have the endoscope, I know it's for the best.

Thank you

Linda

Hi Peter,

Thanks for the explanation, it makes sense now and yes it has eased my mind as to why they are not doing a scan. I'm a complete novice at this cancer lark! . My only concern will be, watching out for signs/symptoms. Due to my Lupus, I have/get many lumps and bumps, some stay, some go. I tend to ignore them as Dr's have always said they are nothing and not to worry...it's my Lupus, get used to it. I thought this lump was another blocked salivary gland at first, a common thing for me, so I didn't worry. Thankfully, for some reason when it didn't go down after 2 weeks, I went to the GP...I wouldn't have normally, and he referred me straight away...and so the adventures began!

It was more the spray that numbed my throat that scared me, because they didn't tell me it would feel like I couldn't breathe, so don't panic. I'd rather it hurt than go through that again, so I'll be brave. My SALT has promised me custard??? I didn't ask! 

Thanks again

Linda