My update post treatment

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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.

  • Hi McAndy, it sounds like you're doing really well.. I'm almost 9 months clear and I have to have a cup of tea or two to help my food go down.. the hair below my jaw and back of my neck is slowly returning, so shaving is becoming more as it was rather than just shaving my cheeks lol.. congratulations.. onwards and upwards. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • 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 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi McAndy

    T2N1M0 tonsil cancer HPV16+ finished chemoradio June 2023

    We have to be optimistic, helps us get through the hard days... I lost 3 stone in 3 weeks, had been trying for years unsuccessfully to lose that amount....then along comes Chemoradio and does it for me!!!...now have a healthy BMI and very happy with it...although I have had to ditch most of my clothes and buy new togs...most of us have few little niggles along the way...par for the course...

    Peter

  • Hi McAndy,

    Well done for completing your treatment ,and that so far your recovery is going well!

    I have the same diagnosis ,with lymph node involvement on left.

    I'm also one of them who are undergoing 2 chemo and 35 RT ,it must be the lymph node involvement that may make it 7 weeks ,not sure.

    How is your taste ? Did you lose it? Is it coming back ? 

    That's the main thing I worry about as I love my food ,but nearly totally dependant on rig now. 

    Just to say thanks for the great update ,keep up the good work.

    Thanks Mark

  • Thanks Loz, glad to hear you are 9 months clear, that's great news. I quite like not having to shave. Little wins eh!

    Best wishes

  • Thanks for that Dani. I must admit when I started treatment I had no idea about amounts / timescale. Just assumed it was a standard course for everyone. 

    I read your blog when I started and that was really helpful as I was just stunned by everything that was unfolding. I like feeling in control of things and suddenly felt I was going downhill without any breaks. 

    So far so good though.

    Best wishes

  • 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 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi McAndy

    well done on getting through your treatment I had 35 radiotherapy to chemo. I did have 7  affected lymph nodes as well .as for worrying about your scan. I take the attitude. Why worry over something that I’ve no control over you’ve done the hard part you’ve done the treatment trust in the team trust in the process lots of us on here, a testament to the treatment being successful. I’m now over six years post treatment and living a fab life. 
    yes automatically celebrations involve food and drink it’s something that’s taken away from us for a short while. You’ll get there. 

    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Thanks for the reply Mark. Yes I love my food too and after about 2 weeks of radiotherapy I lost my sense of taste almost completely. It does seem different for everyone though. I have read it being described as a metallic taste. Wasn't really that just an unpleasant background taste. A dry mouth made chewing difficult too. I could physically chew things at that stage but it just wasn't going anywhere, hence the glass of water to help things. I basically lost my appetite as a result of that which was a total change for me as I enjoyed my meals and snacking in between.

    I stopped eating or attempting to eat with my family as I was just embarrassed to be taking so long and just picking at it while they tried to eat normally. My dietician tried to encourage me to carry on joining them at mealtimes and being more social rather than avoiding meal times together. Quite often it was a bowl of chicken soup and a Fortisip for desert. Another Fortisip delivery turned up out of the blue last week which will keep me going well into next year if I wanted it!

    The good news is that about a week after the treatment finished my taste started to reappear just slightly and then progressively improve from that point. Four weeks on and I'm not there 100% but probably 80% tastewise and able to eat most things. Yesterday I had a bacon sandwich and a gingerbread latte and it was absolute bliss, I kid you not!

    My very best wishes to you Mark, definitely good days and bad days ahead but there is most definitely light at the end of the tunnel. Look after yourself and wishing you a full and speedy recovery.

    Andy

  • Thank you Hazel, I really appreciate your reply. I definitely have a great team behind me both at UHCW Coventry and even more so my wife and daughters who have been my absolute rock from day one. 

    Thank you for your encouragement.

    Best wishes

    Andy