| Joined: Sep 2019 Posts: 2 Member | OP Member Joined: Sep 2019 Posts: 2 | 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
Last edited by andz; 09-16-2019 11:37 PM. Reason: added lPS...
HPV-related Oropharyngeal cancer / tonsil cancer ( Lymph node). T1 - N2, PN1, M0.
Treatment Surgery - Left partial pharyngectomy (robotic surgery) and Left 5 level neck dissection to remove lymph nodes. Single stage muscle flap reconstruction.
All cancer areas (tonsils and 2 lymph nodes) were removed. Pathology of the removed 5 mm margin around the affected cancer indicates negitive margin with no trace of cancer after surgery in the throat or neck.
| | | | Joined: Feb 2015 Posts: 133 Likes: 7 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2015 Posts: 133 Likes: 7 | 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
Last edited by tlc356; 09-18-2019 05:40 AM.
SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15 SCC stage 1, lower gum Mar '23
TLC356
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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!
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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