I knew I should have had surgery

Hi Pamela

I went down the surgery only route and my last PET scan (6 months post surgery) does still glow, but the MDT are not concerned about it.  So surgery may not have left you with a different outcome, but with a different set of side effects.  I did not progress into radiotherapy as I was primary site not found...

As to PET, well not everybody gets one as the scanners are not that common; especially if you live away from major cities.  It is a really useful diagnostic tool and supplements MRI and CT in helping them make decisions, but it is not the "be all and end all" of sorting things out.

My hospital team have always been on top of any issues really quickly so I am sure yours are not that concerned given the time frame that are talking about.

Hi Pamela

I was going to reply to your original post a couple of days ago but everyone seemed to have covered your concerns.  However having read your recent post in which you're sounding quite anxious I felt compelled to reply and just reiterate that the concerns you've highlighted do have explanations and may not be as worrying as you think.

Headaches can be a result of neurological damage from treatment, especially if there is some fibrosis of tissue.

Chest pain can be caused by reflux issues which is not uncommon, especially after treatment.

The MRI may well be picking up a hot spot after treatment which again is not uncommon.

It is only natural to be worried/concerned about these things, especially after a cancer diagnosis and treatment but do please be reassured that they're all side/late effects that have been documented and known to occur in some people unfortunately.

I'll keep my fingers firmly crossed in the hope that your scan will be clear but in the meantime please do mention all your side effects to your team so they are aware.

All the best.

Linda x 

Just a quick post to thank Hellebore1  for her information it is very reassuring to me as another one not offered surgery. Thanks again

Thanks Linda and everyone else who has given reassurance and the alternative, common sense reasons for all my ailments which my paranoid side had taken control of.  I am feeling much more positive now with only the occasional niggle creeping back in.

its a mixture of fear and upset at not having a cuddle with my mum who I’ve not seen since Feb, the isolation of COVID can be so overwhelming, all the time I’m trying to protect my kids from anything worrying and bottling it up, but I’m hopeful I and positive it will all be worth it 

Pamela x

Hi hope everyone had a nice Christmas and new year.  I’ve not been on for a while again as iPad went missing and I still cant access the site on my laptop. Just wanted to give a quick update, in that scope done just before Christmas was clear, I’ve been doing really well eating everything and occasionally feel like I have more saliva but it comes and goes, hopefully one day it will come and stay. I think this is partly due to anxiety waiting for results of MRI which I should get on Thursday, I do have a raised area on the roof of my mouth which is on the opposite side to original, cant see anything when I look but my tongue won’t leave it alone. My app was meant to be telephone but now face to face so they can have another look. Did anyone else have this? Also still having jaw pain though not enough to take pain relief, more annoying /worrying.

HinPamela Let us know how Thursday goes good that you are eating and saliva slowly returning.

Hazel x

Just want to wish you good results on thursday pamela, its good that is saliva improving

Oh and i have and still do have tonnes of ailments that worried the hell out of me, but my scan was clear.

Trev

Thanks guys, will keep you posted, so glad your scan was clear Trev. 
im just about holding things together, they did confirm that most of my throat pain is caused by silent reflux, 5 tablets per day for past month without much change but at least I have a reason so not overly worried about it.

im hoping the raised area on the roof of my mouth has always been there and just more noticeable because of reduced saliva, it’s keeping me positive for now.

Pamela

Hi Pamela, thanks as always for the update, it sounds as if you are making good progress, I know what you mean when you say "my tongue won't leave it alone" as i was always using mine to prod around. Mine was floor of the mouth cancer so was always feeling that area, let's hope the MRI scan comes back with clear results, even better you are getting a face to face appointment so your consultant can actually see what's happening and check your jaw at the same time. All the best for Thursday, take care.

                                                                             Chris x 

update - MRI was clear, I slept without waking up for the first time last night, not sure if it was the completely empty head or the couple of glasses of champagne.  They have said no more scans needed and telephone appointment in 2 months time. I still have my PEG in which hasn’t been used in 3 months, they asked that I keep it till March at least as the hospital is a hot spot for COVID, fine by me, it’s not causing any trouble.

A huge big thank you to everyone on here That has given me support and advice over the past year, you are a wonderful bunch and I couldn’t have done it without you in this group.  Good luck to everyone on their journeys 

Pamela xx