HPV+ Keeps chasing me !

HPV+  Keeps chasing me !

Hi club members!  My name is Stuart, I’m 58 and was diagnosed with T4a N1, p16 Positive SCC base of tongue and lymph node on right side of the neck in October 2020 (then T2 N2 never understood the change).

I was referred to St Georges University hospital in Tooting and commenced treatment at the Royal Marsden in Sutton following teeth removal and tongue biopsy.  No surgery but six weeks of radical chemoradiotherapy beginning mid November and finishing day before Christmas eve; how delightful.

Those that have been through this treatment know what a challenge this is and suffer some serious side effects.  It wasn’t a good time for me, I couldn’t eat and refused a feeding tube.  Being a bit of a chunky fella to start with losing 5 stone in 6 weeks wasn’t really an issue for me, some would say it was beneficial!!

I had my Pet Scan at the end of March 2021 which showed NSD so I was walking on air!!  The treatment gifted me with tinnitus and lack of saliva; I felt this was a fair exchange for saving my life.

I then commenced the 6-8 weekly reviews.  All was going along smoothly until May last year when I noticed a stiffness on the side of the neck where the cancer was treated.  My NCT were superb, ordered a UUS with or without a FNA.  I was seen a few days later and examined by two Doctors for over 40 minutes with US and they could see nothing but scar tissue.  They felt it was a result of the treatment but as they didn’t have a baseline to work from they recommended an MRi.  At my follow up this conversation was repeated and I went away to wait for an appointment.  6 weeks later at me next review, the area on my neck was becoming harder and now slightly painful.  The consultant I saw on this occasion arranged for an MRi which I had prior to me next appointment due early December 2022. During this review the consultant stated they were 90% positive that this was Fibrosis but they wanted to do another MRi after 3 months to confirm there was no change. He had a feel of my neck and assured me there was nothing there and he had felt hundreds of necks.

Roll on mid February 2023 and I have the planned MRi.  My next appointment was 9 March 2023 so having not heard anything I thought everything was as suspected………. How very wrong!  I stepped into the consulting room to be met by one of the lead cancer surgeons at St Georges.  He immediately said to me that it was bad news and that my cancer had returned!

This was a hammer blow, in fact hearing this was much worse than hearing it the first time round; unsure why but it was.  He then proceeded to examine my tongue and was satisfied there was nothing there so it was looking like the lymph node.  He was talking to me but I felt I was not hearing him or even in the room.  Recalling all I’ve been through, the pain, sickness and changes, all for what?  All crazy thoughts I know.  I then asked a question, if this has shown on the MRi why has it taken 4 weeks to be telling me?  Why wasn’t I called in earlier.  To his credit he felt it was a good question which he couldn’t answer but he will be asking some searching questions.  Didn’t make me feel better but I needed to ask.

Clearly the delay wasn’t ideal but we were where we were.  He proceeded to telephone specialists around the hospital and manged to get me in for a UUS & FNA within an hour followed by a Head, Chest and Abdomen CT, again I felt I was dreaming all of this, I managed to call my wife who was waiting outside of the hospital, here was a McMillan nurse (lovely Hannah) but I just needed to tell my fellow journeywoman, needed to see that face that had looked at me throughout my traumas and treatments.

Although she was now there my thoughts kicked in from the trance I found myself in.  Asking my self futile questions, ‘ what if its just an infection and they got it wrong’, ‘how could he say it was cancer from an MRi without a biopsy?’, ‘why a CT in those areas,,have I got it in the brain, in my lungs or my stomach’.  All these thoughts running around my head non-stop.

They took 4 samples and the CT was completed and then it was home time with an appointment the following Thursday to find out what is what.  I managed to call a few people who have been very supportive throughout my treatment (big shout out to Beesuit) as we drove home.

This began what I can only describe as a week of mental torture, that night I woke every hour and thoughts were dark and scary.  I truly believe the mental challenge is one of the greatest hurdles.  I’ve never liked the phrase PTSD being thrown around as it is nowadays being a military veteran who has seen active service and 24 years police service, but, I assure you it is real for those who have to deal with cancer diagnosis and treatment.  I never realised how it had and was again effecting me.

Everyone wants to try and say reassuring things but sadly they are meaningless when you are waiting for diagnosis, Monday was the worse day for me as I actually broke down and cried, I’ve not cried for as long as I can remember, but I just couldn’t stop, then I felt better; strange isn’t it.

So Thursday comes, I’ve already rehearsed in my head what I’m going to hear (but secretly hoping he will say they got it wrong) is it curable? will I see next year? Is it another cancer? Again this Surgeon (he is a huge man, looks and sounds like James Earl Jones) gave it to me straight.  “I’m afraid its bad news”  I then thought OMG its curtains!  He followed this with “Your cancer has returned (but he told me this last week so I quickly dialled it down in my head).  He proceeded to tell me that it’s the same cancer and it was nestled in my neck muscle (the one that was hard).  He stated that he felt it was still curable dependant on a Pet Scan and MRi of my liver (no beer then for a while), if they prove clear then it would be a neck dissection, he described this and explained my neck muscle would be removed along with the cancer, not looking forward to that but I truly believe I’m in the best hands.  These incredible people have done so much for me and words could never describe my gratitude.

So, Pet Scan already arranged for next Saturday and today I will hear about the MRi today.  The surgeon said try not to worry too much; he did say it was easy for him to say because if he had it he would also worry, but not too much.

I will update in two weeks when I know more so fingers crossed (can’t believe I will may be rejoicing with just having neck cancer, what a weird time).

Stuart

‘ Love,,,,,Love is the answer’