Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I'm sure each of our situations can be different and I can only speak to mine with any degree of authority.
When I found my lump in my neck shaving one am I told no one since it didn't involve pain. A month went by and I finally said something to my wife and she screamed, "my God, you have golf balls in there, ARE YOU STUPID!!" Guess so....anyway, she called our neighbor, plastic surgeon, who saw me and referred me to a neck surgeon (doctor #1) who said he didn't know what they were but regardless they should not be cut out.
My wife wanted those suckers out so she got me another appointment with another neck guy (#2) who said regardless of what they are they need to come out. He scheduled an operation and I got my blood work done and was to come back in 2 days. Confused I told my wife I needed to see another doc so she called another neighbor who is a MO. Went to see him (#3) and he put me on antibiotics saying it couldn't be cancer as I didn't fit the profile. Was told to come back in 3 weeks to see if they had shrunk. They did shrink.
She wasn't happy so she told me I had to take her mom to an ENT because she was having balance issues. When he (#4) finished with my MIL he turned to me and said "so I understand I need to take a look at your lumps". Man was I unhappy with my wife because she just wouldn't let this thing alone! Anyway he did a FNA and after 10 horrible days he confirmed that I had SCC. he gave me a 60% chance of survival after a radical ND and chemo and rad. Sensing that I was not happy with his recommendations he referred me to Moffitt.
I was due to go back to Dr #3 the next day and he had already talked to the ENT and said he would only recommend a partial ND, just removing the 2 positive nodes and then chemo and rad and he gave me a 70% survival rate.
Next day I went to Moffitt, a CCC (#5) and after their tests, Primary biopsy and team evaluation they recommended no ND but chemo and rad and they gave me a 80 to 90% chance of survival.
What would you have done?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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