Hi all,

here's my story.....

50 years old, Health and fit. none smoker & light drinker. Married for the last 10 years with two kids

Started a 4 month training for Perth City2Surf marathon in June 2019. 2 months into the training my daughter got tonsillitis, I got a sore throat however I continued running and remember coughing several times one training run.
Two days later a lump formed under my jaw bone. 2 days later went to the DR and go anti bioptics. 4 weeks later the lump got bigger and I got a referral for an ultra sound and a biopsy.
Results came back that the lump (3mm) was the secondary and was HPV16 + and metastatic SCC. Got a referral to a Oncologist ENT surgeon who specialises in robotic surgery (TORS).
Saw the ENT and needed two more scans, CT and PET scan. Results found the primary in the tonsils.

10 weeks after the lump appeared, I had surgery. Left partial pharyngectomy (robotic surgery), left 5 level neck dissection to remove 25 lymph nodes and single stage muscle flap reconstruction.
All cancer areas (1 tonsil and only 2/25 lymph nodes had cancer) were removed. Pathology of the removed 5 mm margin around the affected cancer indicates negative margin with no trace of cancer after surgery.
I had a Chyle leak for 1 week. I was in hospital for 5 days, 2 weeks recovery at home and I am back at work after 2 1/2 weeks.
Throat and neck are slightly swollen and there's some discomfort.

I am seeing a radiation oncologist next week to see if I need radiation treatment. ENT doesn't think so!!!!

Some thoughts

DR says I'm 99% cured, I gracefully asked him "what does that mean?", 1 year, 5 year, 10 year survival time. He can 't say....so why tell me 99%!!!!
Limited stats in AU as cases are low (4,500 per year compared to 40,000 in the US). US stats indicate 60-80% for early detection and my age
Men do not take their health seriously. A small issue can become a major issue if not treated early
Keep a close monitor of yourself and make sure you see a health practitioner if you notice a change or feel unwell
Always get two opinions
Get informed, google stax's
Make sure you have the right insurance (Private health, TDP, IP and Life)
Make sure you spend time with your love ones
PS: I ran the marathon 3 days before the surgery

I appreciate that OZ is far far away with a smaller population therefore fewer specialized hospitals. I think I remember that some of the leading Comp. Cancer Centers (CCC) in the U.S. provide for the ability for records to be sent for review. if I were you I'd try that route and seek out a head and neck specialty in a CCC that will review your record.
From here you're on your own as I have heard this ability exists but don't actually know that it as a proven fact.
It is my understanding that the top CCC's are (in random order) M.D. Anderson, Dana-Farber, Sloan-Kettering and the Mayo Clinic. Of course there are quite a few more.
An on line search came up with this: https://www.mskcc.org/experience/be...s/requesting-medical-records-review-mail

Andz,

Congratulations on completing your treatment! You seem to have done quite well, and hopefully there is no radiation in your forecast!

Here in the states, you’re not theoretically cancer free until you’re out 5 years from your treatment! I just made 5 years after my last recurrence, even though it’s been 10 years!

Good luck with everything!