Previous Thread
Next Thread
Print Thread
Page 9 of 9 1 2 3 4 5 6 7 8 9
Joined: Jun 2014
Posts: 86
ak123 Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jun 2014
Posts: 86
[quote=davidcpa]Make sure you understand I'm not a doctor but IMO I would get another opinion before this surgery.[/quote]

Hi David,
Both NCCC in MI recommended the same surgery. do you think we should get a third opinion?


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Not if you are satisfied with your due diligence.

RE the picked at random statement, I have observed during my time on this site that we have 3 large groups of patients, 1. HPV positive, typically non tobacco users and Primary usually found in BOT or tonsils, 2. HPV negative, tobacco users with Primary usually found in the forward part of the tongue and 3. HPV negative, non tobacco users with Primary usually found in the forward part of the tongue. I have asked docs at Moffitt numerous times over the years what do they think cause OC in group 3 and the only answer I have ever gotten (not universal) is perhaps another virus or another undiscovered strain of HPV. Back when I was Dx'ed with OC I was told that the typical OC patient "was an old man who sits in a bar and smokes and drinks all day"! Since I was in otherwise perfect health and didn't use tobacco and only drank socially I pushed Moffitt for a cause to my OC only to be told "what difference does it make, you have the cancer and there's only one way to treated so gets get started". This response really ticked me off especially coming from a teaching cancer center but what else was I to do. I went thru Tx and I also didn't find this site until my Tx was over so it was then that I renewed my quest to find my cause. When I first went on this site there was no mention of HPV, EVERYONE was a tobacco user. I did happen upon a "study" being done by a Dr from Johns Hopkins, Maura Gillison who thought there might be a connection between OC and the HPV virus. I
called her (she answered her phone herself) and after we talked she asked me to send my cancer slides to her (Moffitt tried to talk me out if doing this BTW) and a month later she said my slides tested positive for HPV16 meaning my cancer was not tobacco related but caused by a virus. Ever since then I have been on a mission to make sure the world knows that HPV causes OC.


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.
Page 9 of 9 1 2 3 4 5 6 7 8 9

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5