Hello everyone, I just wanted to do a short follow up regarding my experience. I was diagnosed with P16 positive squamous cell carcinoma at the base of my tongue T2 N1 M0 and received 6 weeks of radiotherapy and also chemo at week 1 and week 4.
It has now been 4 weeks since I completed my radiotherapy and now starting to feel a bit more comfortable. Obviously feeling quite apprehensive about what the future has in store, has the treatment done what it was hoped for etc. I won't have a scan until early January so that will be nervous times. I think the term SCanxiety sums it up quite well.
The treatment itself was fine, the chemotherapy was ok but then I only had a couple of short bursts. I felt really tired a couple of days afterwards but no particular side effects. I was given anti nausea medication and didnt experience any sickness. No hair loss but in fairness I didnt have much hair to start with.
The radiotherapy was painless, wearing the mask was uncomfortable but bearable although I can imagine that people suffering from claustrophobia would have a challenging time. The radiologists were fabulous. Really supportive and constantly explained what was happening. all the staff were brilliant. After about 3 days the receptionist seemed to be on first name terms with everyone and gave a friendly greeting. Seemingly little things like that go to make a big difference. After about week 4 My neck was quite sore and externally I developed quite an inflamed area to the point that I had to wear a dressing. I was also given Flamigel lotion to apply. I still use this daily but there is no obvious sign or feeling of irritation. However I have hardly needed a shave for a number of weeks. I felt really emotional on my last day of radiotherapy. My wife asked me how I intended to celebrate. That would normally involve food but that was out of the question as the swallowing difficulties. My response was to just sit down and cry. Whilst the treatment itself was painless the whole experience was exhausting, especially the daily hospital trips with traffic issues, parking etc was more than enough. I have since read the experience of the actor Stanley Tucci who has undergone similar treatment but with radiotherapy for 7 weeks. Interestingly I mentioned this to the oncologist and said 6 was enough, I couldn't do 7. He told me that the therapy was 7 weeks but they found that if they increase the dosage but reduced the timescale to 6 weeks it had a similar effect. His personal opinion was that they wouldn't increase it further though as it would be too much.
I still have a feeding tube fitted but have not had to use it for over a week now other than the daily cleaning routine and putting water through it. I am able to eat most things now, other than spicy or particularly hard foods. I always have a glass of water handle when eating as this helps. Over the course of treatment I have lost about one and a half stone but in honesty I'm now probably the healthiest weight I've been for years so will be a little more mindful of my daily food intake as I get more confident with my eating. I'm hopeful that the oncologist will arrange for me to have this removed when I see him again in December.
I am encouraged with regard to how things are progressing. No doubt there will be a few bumps in the road ahead but I'm trying to be optimistic, which is easier some days than others.
My very best wishes to everyone else on this journey. Hopefully better times ahead.
Thanks Andy. That is a very helpful and encouraging update. Well done and best foot forward.
Dont worry about having just six weeks RT. The dose you get depends on how far advanced the cancer is. A T2, which is what I had, doesn’t warrant 7 weeks.
The fractions remain similar but a 7 week regime supplies more radiation.
I had 63Gy or 65Gy ( I never remember exactly). Folk having 7 weeks got 70+
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
So far so good though.
Ace!
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
