Charting my journey to get cured of HPV16 tonsil cancer.
At some point in the summer of 2019 I started to notice a feeling of something stuck in my throat. Having a look in the mirror was a bit tricky and although my right tonsil was swollen i didn't pay much attention. I should say I suffered from bad tonsil infections in my youth and when I saw it swollen again I didn't pay much attention. I gargled with salt water for a week or so, then had another look.
This time there was definitely something on my tonsil - something that could only be called a lump. Well you don't think the best do you - even though at this time I knew nothing about HPV16 (well very little) and the risk to men my age from this type of cancer.
I didn't stick my head in the sand, instead I went and made an appointment with my GP. This took about 10 days and so on the 25th June I sat down in the surgery and explained the issue. Basically she took one look at it and immediately referred me to the local hospital, under the emergency cancer referral guidelines.
That was obviously a bit of a shock. I'm young (ish) healthy, never been in hospital or even had a serious illness before.
I was speedily referred to the hospital within 3 days - so did not have long to worry. Or so I thought....
Hi Bedrock 66 that is exactly how my cancer started in December 2012 i had a tonsillectomy to remove it they took both tonsils out and the lump removed from my right tonsil was cancerous, have had radiotherapy 30 doses then right side neck dissection then left side neck dissection and just had a 9 hr op to remove my soft palate but i am still here cant talk very well struggling to swallow had a peg fitted when i had my first big op but may have to have another one fitted but life is sweet keep ur chin up there is a light at the end of the tunnel rgds Alan good luck if u want to no anything just txt me...
Anyone know about cancer back of tongue
what treatment can I expect? Should I go private as I have health insurance that covers cancer. When asking NHS they say this could cause problems and delays. I don't understand as my Private does not have a cash limit.
So far the NHS has taken since July , now nearly into October.
Sounds like you've had a tough time. I'm hoping to avoid getting tubes and pegs, medical team haven't really mentioned them so far. Did your cancer return?
Your sound like it's not getting you down however, which is amazing.
I'm only at then end of the first week of radiotherapy, so a while to go yet.
Geolind, have you had an urgent cancer referral?
What investigation has been done so far?
In general I'm not sure going private helps speed things up once they are diagnosed. Before you get a diagnosis maybe..
Mouth cancers have to be treated quickly oI' suggest chasing anybody and everybody TODAY.
Personally I've been very impressed with the speed and efficiency of my treatment - I don't think you should have been waiting since July!
Get on the phone this morning!
I had the urgent referral back in August, I was sent for a CT Scan of my said I had something at the back of my tongue. chest and body, this showed my nodes were clear as was chest liver kidneys, I pointed out the glands in my neck were swollen, the following week I had an appointment for biopsys of my neck on a Friday called by the respiratory nurses and asked to attend hospital for a meeting on the Tuesday, Told I had Sqamous cell carcinoma. 2 weeks later taken in and had a camera down nose into mouth. The ENT Consultant told me there was something at the back of my tongue. The following week I was admitted as a day case under general anaesthetic, biopsys taken of nose throat and gullet. TA week later I had an MRI of my neck and head. Now 2 weeks later they have had the team meeting to discuss my results and any treatment. I now have an appointment with ENT on Tuesday 1st October.
Hi i had exactly your cancer. Sqamous cell carcinoma which was primary in tonsil and back of toungue and secondary in lymph glands on neck. Initially it was very distressing but after multiple tests i was informed HPV cancer responds better to treatment. the treatment was hard, and the recovery took several difficult months but slowly i got better, im now 3 months since being given the all clear. I had full private health insurance but after discussion with my consultant we agreed NHS had access to all major kit and had far more experience with cancer. I must say the NHS were amazing and everything happened when expected, the McMillan support i found superb. As said earlier its a tough treatment but they are very good at managing this type of cancer.
I have 5 tips
Stay away from internet and just use this site to avoid bogus info
take a trusted friend to every consultant meeting as you will hear what you want to hear
if your tired ...rest as fighting the fatigue is pointless
Get fit if possible , i walked 6 miles a day all through the winter as its the only thing i controlled, the rest is in the hands of your consultants
Staying positive is hard but it works wonders for your recovey
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