Well, just shy of 4 years since diagnosis and I'm once again on the operating table. This is becoming an annual event. However this time it looks 80-90% like a tumour. A week to wait for the panendoscopy and then a couple of weeks for the histology and MDT. My neck has been feeling "different" (not painful or anything concerning) for a month. Routine check-up and not looking good. Offered a PET scan but I've opted for biopsy to confirm then scans to see the extent. Early days, but as it is in a similar location to a previous round (2) I will probably opt for surgery as before and hope for clear margins avoiding RT once again. Somehow I don't think this one will disappear before the main surgery like the last one did.
As ever - updated text in the thread below.
I know, Mo. The lack of joined up care is frightening. I think of you often and send you healing hugs whenever I do. HUGS
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I though it would be good to update as I am now 3 calendar months since starting treatment and into my 8th week post physical treatment.
It has been a long saga (see profile) but I have ended up with 6 weeks of radiotherapy (65Gy) and 5 of 6 weeks of Carboplatin chemotherapy (the 6th week was cancelled as not needed 
).
I slept most of the first 3 weeks post treatment and still feel fatigued, but I do manage to walk the dog each day some 3-4km.
Pain is controlled and now mainly associated with a nasty ulcer on the rear right of my tongue that matches with ulceration on the jaw “hinge”. Paracetamol and a slow release patch seem to make it tolerable. I am frustrated with the very slow healing, but each day I can see it getting smaller, but no less painful. The roof of my mouth is also very sensitive to temperature – hot and cold. Again as it slowly changes from a yellow damaged colour back to pink it is easing.
Taste is back and has been for around 2 weeks. It is muted, but I definitely know what I am eating and that is not just from sight and smell. Strangely salt is very subdued and sometimes I cannot taste the salt and bicarb mouthwash I use, other time it is definitely there. Other tastes remain consistently OK.
If I could just crack the ulcers then I may be able to eat more than softish foods and eat into the evening (I find post 3pm the ulcers are too painful to eat, but settle overnight). At the moment I am still supplementing the calories with Fortisips.
I still have the PEG and that will stay in until I have the PET scan and the all clear, just in case the treatment has not worked and I need surgery etc. I am not anticipating this will be the case.
I have developed lymphoedema under my chin. Not nice, but I rang my local hospital who do the routine ENT checks on me and they got me into a clinic inside 2 days. So yesterday I had a lymphoedema appointment at one hospital and then drove on to the tertiary hospital for my dietitian appointment.
There is not a lot they can do in the hospital for me with the lymphoedema – its down to using the massage techniques he showed me to move the fluid. This is exactly what I wanted to know as the oncologist only showed me 1/3 of what was needed to do when I saw him in March and I was wondering why it was not getting any better!
I adore my dietitians as they work with me to achieve what I want to do in terms of feeding and regaining my post treatment weight etc. I am pleased that my jaw opening is 45mm (was 50 pre treatment). That is a massive improvement on the 15mm at the end of treatment.
Every clinician I talk to says I have made a really good recovery. It has been tough, but I know it is not as tough as many have had to endure. It has been very much 2 steps forward and at least one back. Last week I would not have written so positively! There will be other times when I will struggle, but the trend is general improvement.
I have to give a shout out to every single person I have met on this recent leg of my journey. They have understood what I needed and wanted and done their best to help me achieve that. Understanding, Care, Compassion and Kindness is barely adequate to describe them. I despair when I see how some hospitals treat patients.
PET scan in mid May and the 21st May sees me back at ENT Oncology for the results (
).
Hopefully this thread will give those following a perspective on the treatment and recovery. I also hope that people will see that not all those side effect affect everyone and not all of the side effects are to the extremes suggested by the oncologists.
Great update. You are doing well.
Every clinician I talk to says I have made a really good recovery.
Modern targeted therapy spares so much collateral damage. My oncologist is in agreement. Considering what most of us go through we, by and large, make an uneventful recovery.
By week 12 I could eat and swallow a steak but I couldn’t taste it.
I did my exercises religiously and had no issue with my mouth opening at all.
These exercises I still do and will continue. Fibrosis in all its manifestations is a forever effect
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
