Hi All, update for tim(wanna play guitar) diagnosis Tonsillar cancer (right) HPV +16 T2N1M0 Last year. Completed treatment 5/3/21 with 6 x Chemo. Cisplatin plus 30 rads.
I’m Week 15 post treatment.
It was all going well, albeit very slowly but then had a phone call out of the blue on Thursday morning to go to the hospital on Friday for a PET/CT SCAN.
Alarm bells started ringing as WHY? I had a scheduled telephone consultation with the Consultant the next day for MRI results. So I now had a very apprehensive 24 hrs wait for the call.
The Consultant had scheduled the scan because my MRI was “inconclusive” and needed the 3D view at cellular level that a PET/CT scan offers so she look at it in detail. But then said she was “ fairly confident “ that there was nothing there and it was scar tissue from previous neck surgery and radiation. I’ve previously had a neck dissection on the left side along with two full anaesthetic biopsies to remove tonsils etc. Plus the radiation which all leave scar tissue apparently.
She also explained that an MRI has difficulty in telling the difference between tumour and scar tissue. So I was a little bit relieved about that but now it means I could be on another treatment scenario with biopsy/surgery!
So, another months wait for results/MDT etc for an appointment. My only thought why I wasn’t given the Pet scan in the first place? After a bit of research on the inter web it became obvious that MRI’s are far far cheaper than a PET/CT scan.Your thoughts are welcome on this.
Anyway, here’s my summary for this week:
1: FATIGUE. This seems to be definitely receding thankfully as I’ve not had a period where I’ve had to go back to bed in the day. Excellent.
2:NEUROPATHY. Not a great deal of change. I know this is a long term repair. It only really effects me at the end of the day when tired.
3:TASTE. Definite change this week! I do have some taste returning, estimating about 10-15% which is encouraging. It still doesn’t last for a whole plateful though but I’ll take any improvement.
4:MIND. Obviously it’s taken a hit this week with more unknowns/fear of what might be happening. But I know sitting around mulling it over constantly is no good. Must keep busy and active.
5:XEROSTOMIA. (dry mouth) This is something that hasn’t changed for me although I’ve got better at managing it with regular drinks, chewing gum and use of Xylimelts at night. Hopefully, time will change this. I do have some saliva but it’s insufficient to eat dry food- bread, chicken, biscuits etc.
6:MOUTH. Have taken the recommended Fluconazole which nailed my oral thrush almost within 48 hours( thanks for tip off from Dani and Hazel) As most people will attest to, your poor old mouth is what suffers most.
7:LYMPHODEMA. I’ve been doing the exercises and massage. These do work. I informed the Consultant and she’s made an appointment at the Lymphodema clinic for me. So progress there.
Well folks, that’s me for this week. A bit of a roller coaster few days with the scan but it is what it is. As usual any advice, observations on any or shared experiences is most welcome. Have a peaceful and improving week!
Best wishes Tim
Tim. Don’t stress too much about the PET. I had a tiny blip on my MRI at 12 weeks. It wasn’t routine but oncologist ordered it because I still had quite a bit of throat pain. I then had a hot spot on my scan. My oncologist said that there is a perception that everything avid is cancer but that is not so He assured me that treatment failure at this time in early disease is extremely rare. He was right.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I am Tim. Looking forward to a few days away. Hoping track and trace won’t catch me like it did last time 
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
