| | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | David, it occurs to me that a letter to the editor, with plenty of references, might get HPV16 added to the list next time around!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You would think that a book intended for cancer doctors would not have to be corrected or updated by someone sitting in his waiting room. JM2C's
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.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | David, Out of curiosity what was the copyright date of the book? Maybe it was a reprint of an old version. I know from Brian that HPV has been a documented path to possible OC since the year of 2000. But, when was it widely known throughout the medical community? Like anything I'm sure it takes a while for things to filter down. My family doctor knew that HPV can cause OC...So, I'm sure most medical professionals have to know this by now...I'm really surprised by this..
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | [quote]You would think that a book intended for cancer doctors would not have to be corrected or updated by someone sitting in his waiting room.[/quote] In a perfect world it wouldn't need to be, but as we all know, it's far from perfect. A letter from a "civilian" reader pointing out an error might cause them to sharpen their research pencils!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I was nosing around on the Fred Hutchinson CC site (Seattle) and found this quote about OC: "Who is at Risk? Most cases of oral cancer are related to the use of tobacco and alcohol. Quitting tobacco (or never using it) and limiting alcohol use to one drink per day or less sharply reduces the risk, even after many years of use. This type of cancer is more common in men than women because of drinking and smoking habits. Men over 40 are most at risk. African Americans are diagnosed with oral cancer more often than whites. Other risk factors include eating few fruits and vegetables and contracting human papillomavirus ( HPV), a common sexually transmitted disease." I'm guilty of not eating many fruits and vegetables! Maybe that explains why cancer came well after I stopping smoking and drinking.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | Well they got it mostly right for a change. OCF also mentions the fruits and veggies thing, but to be honest, people with a diet low in them are at risk for just about everything out there. Men 2-1 over women, black 2-1 over white, (incidence and death), smoking and alcohol are givens. HPV16, while the fastest growing segment of the OC population, is still not the biggest cause, though on it's way to that spot over the next ten years if trend lines do not change according to Gillison. The data on HPV has appeared in the NEJM, J of the NCI, Cancer, J of Oncology and even more. GP doctors only read a few mags, they only have to take so many continuing ed credit courses a year to keep their license, and they get to pick what those are on. Too many still do not know what's what, but the number is declining as the data has been out there awhile. It still has to be found primarily in dentistry as medicine really is out of touch with the mouth in general. So our best hopes right now are to tap the hygiene and general dental profession for early detection and increasing knowledge. They are the low hanging fruit, and when we get them in line (a tough job) we'll beat on the MD's harder.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
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.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | okay...that's inexcusable
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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