Hello, diagnosed tonsil cancer July 2021, now 8 weeks post treatment

Hello everyone

I'm 66 years old, male, diagnosed with tonsillar cancer caused by HPV 16.  

I hadn't had colds or sore throats in several years.  On 1 June 2021, I noticed a painless swelling on the left hand side of my neck and went to straight to the GP.  Fast-tracked for an ultrasound, where a biopsy of the swelling was also taken. Then, on 8 July at a face to face meeting with an oncologist, I was told that cancerous cells had been found.   But, to my surprise, there was a suspicion that this had originated not in the neck but in the tonsil.

The biopsy of the tonsil that followed and camera footage taken at the same time indicated that I had what appeared on the surface to be a tonsil tumour that fitted into the T2 size category.  Could be worse, I thought...      Unfortunately,  the subsequent MRI found that the tumour was larger than that; it had grown in the linings of my mouth and was wrapped around the carotid artery (not good news, but not necessarily always as bad as Dr Google may tell you, apparently).   It had also spread to the base of the tongue.  But, for some unexplained reason, this new information about the true size of the tumour wasn't given to me by the NHS team that was planning to treat me.  And so, by the end of the first review after the MRI scan,  as far as I was aware my tumour was still graded T2, (and N1 for the 1 affected lymph node and M0 for no sign of spread beyond the neck). I only discovered the truth later, by chance, as explained below.   

Also at that meeting I was unexpectedly invited to apply to join the Torpedo trial at Christie Hospital Manchester, which aimed to treat 2 groups of patients with standard radiation therapy and proton beam  therapy (PBT) respectively, to compare the short and longer term side effects of the two treatments.  I'd already been reading up on PBT and was keen to participate in the trial. Unfortunately I was randomly selected for the smaller group receiving standard radiation therapy.  I decided to look into the possibility of receiving PBT privately and arranged a consultation. 

During the consultation the oncologist happened to comment that I had "a large tumour", and informed me that the tumour had grown to the carotid artery and tongue base.  And he explained that the chance of a cure for a tumour of that size was around 40-50% at best.  He had assumed I knew this already, but no.  This all came completely out of the blue and was a terrible shock.

To cut a long story short, I was able to pay for PBT with 90% of my life savings.  But first all the metal fillings and crowns in my mouth had to be removed, as they would interfere with the beam.  This involved over 6 hours of dentistry, spread across 2 sessions.  I was also advised by the dietician to have a PEG tube inserted before the treatment in case I became unable to swallow.   After the procedure I was in quite a lot of pain, which I had been told to expect due to stomach muscle being damaged by the incision, but it was more than that: the PEG had been attached too tightly and I had to return to the hospital to have it loosened a week later.  The following day I had my first PBT treatment.  One heck of a week...

Before the treatment began the oncologist had written to my GP recommending that, due to the size of my tumour, I should have 33-35 treatments.  But In fact I was given 30 sessions, equally effective apparently, and which was a huge relief as by the end of the 5th week I was hanging on....     I opted for Carboplatin over Cisplatin chemotherapy mainly because I have had loud tinnitus in my left ear for many years; Cisplatin might have worsened it.    Luckily I was able to tolerate the 2 3 weekly cycles quite well...   And possibly because PBT did less collateral damage to my mouth than standard radiation often does, I was just about able to swallow liquidised meals throughout.   With the help of protein and high calorie drinks I only lost about 6 pounds in the 6 weeks of treatment.   At one point, due to missing some meals through travel time, I was close to supplementing my diet by using the PEG feed tube, but I just about managed to do without.  It's a bit of a rigmarole to look after the PEG , but not difficult.  And I'm very glad it was there as a back up if needed, just as it often is.  

I am now 9 weeks on from the end of my treatment.    As so many other people have found, side effects and discomfort have continued for several weeks.   Taste is slowly returning.  The sores on and under my tongue are slowly easing, some light chewing is a little more comfortable now, but each meal is a bit of a slow slog to be honest.   That's one of the hardest things to cope with as normally I love my meals.     

I did have a fairly good level of fitness before treatment and, happily, was able to quickly resume my daily target of walking around 3.5 miles every day.  It's really, really helped....

Waiting now for the PET scan (probably around late January) and then the result of the treatment.   I'd really hoped that by now the swelling/hump at the back of my tongue caused by the tumour would have noticeably reduced.  It may have shrunk a little bit, it's difficult to say for sure...  But it is still "early days" apparently...

Thank you for such a supportive and friendly forum

GR10