Hi, my name is John and I got diagnosed with left oropharyngeal tonsil cancer T2 N2a M0 P16 ( radiological was T4 however clinical felt T2) back in October 2020. I started getting a sore throat back in march 2020 as we went into lockdown. At first I thought it would clear up in a week or two but I was still suffering in May. I phoned my GP practice but was told no phone appointment,s available and to try Monday. I carried on and thinking I,ll only be wasting their time until July and was finding it quite painful to swallow. I called the gp practice again and finally got a telephone appointment. I explained to my GP that I had a sore throat from march and he asked if I could get someone to talk a photo of my throat even though I explained it was lower down. I emailed the photo and was prescribed antibiotics. After a week I phoned to say I was still suffering so I was told my sore throat must be viral as if it was bacterial the antibiotics would have cleared it up. I was told to take salt water mouth washes till it was cleared. By August my wife was on to me to get back in touch with the gp practice as I was still suffering and she. Insisted I asked for a referral for ENT. This time I spoke to a locam and explained all. He referred me to ENT but in the meantime he prescribed antacids Incase it was reflux. I got the referral letter after a couple of weeks and I had to phone to make an appointment. I think I waited around 4to 6 weeks for my. ENT appointment which was by then October. I had the camera put down my nose and straight away he told me one of my tonsils was quite large and he would arrange for me to have an MRI and a biopsy done. This shocked me as I'd had my tonsils out when I was a child but apparently roots of the tonsil can remain. I had the MRI and biopsy in November and was given the bad news I had cancer. I went in for an exploratory surgery in December but was told the tumor was attached to under my tongue so surgery wasn't an option. I was told my case would be passed to the MDT team for a treatment plan. In January I went into aintree hospital to have a peg feeding tube fitted which turned out to be a god send so any who reads this and is has the option of one take it. I began my treatment on the 25th January which was 2 cisplatin chemotherapy and 30 doses 65gy radiotherapy. This took place at Liverpool clatterbridge centre who where amazing. The last 5 days of my treatment I took a bit of a wobble due to sickness and. Weight loss and was admitted. This is were the feeding peg is invaluable as without it I don't think I'd be here today. My treatment finished on the 5 march 2021 and I have suffered a number of side effects. The usual ones like hairloss. I lost my beard and a small amount of my hair from the back but I'm happy to say has now regrown apart from a small patch of beard on my neck close to the radiotherapy site. I didn't really suffer with burnt skin as I moisturised my neck at least 3 times a day throughout my treatment with the cream they supplied. I still suffer terrible with dry mouth and loss of taste but slowly some taste is returning. I went for my PET scan in June and was told my tonsil cancer was in remission but have been told I have multiple thyroid lesions which were picked up on an ultrasound I had during the coarse of my treatment. I have and appointment on the 17th August to discuss this but the PET scan picked up subcentimetre size lymph nodes in my chest so I have been referred to the respiratory team. I still have my peg feeding tube fitted but only use it if I feel I haven't eaten enough by mouth as some things I can't eat especially with the dry mouth and some is just down to taste. I went from 98kg down to 74kg but have since gone up to 77kg. Prior to lockdown I was fit and healthy playing squash sometimes 3times a week and you think cancer won't happen to me. Now I would encourage anyone to get checked out if they have anything which trouble,s them longer than 3 week's. This is my story and sorry to harp on. I,d just like to add that the staff at Liverpool clatterbridge centre from the porters to the consultant,s and also the team at Macmillan have been amazing and will be forever in there debt.
Good evening ZeeZee263, thanks for writing this post and the fact you mentioned how important the PEG was in your case and that you still have it as a backup. Im totally with you with " it will not happen to me" but im afraid cancer is not picky so any difference in your body changes or feeling should be chased up, thankfully you kept on at them until you saw the right people to deal with it all. Yes i think we are all very grateful for the skills of the people who work for the N.H.S as i know for a fact i would not be here if it was not for a supportive a dedicated consultant, im glad you harped on as it made a good read with great meaning. Wishing you all the best with the respiratory team who will also look after you. Take care.
Chris
Its sometimes not easy but its worth it !
And Hi from me to ZeeZee. The Covid pandemic has caused all sort of hold ups but thank heavens you were seen in the end. Having a feeding tube is one of the things I pick up that a lot of newly diagnosed souls are really frightened of so thanks for your reassuring post. I avoided a PEG as hospital ;policy was against routine placement in un complicated cases, but had an NG. As you say...a life saver.
You can't really fault the NHS once you're in the system......only a few rare occasions have folk been let down.
Best of luck with the respiratory team
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
