#79024 08-20-2008 10:57 AM | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | There has been a lot of posts and information about HPV here and I personally have wanted to believe very much the reports that survival rates and treatment outcomes for HPV are better than smoking or alcohol related BOT. (my insurance does not want to pay for HPV testing of the biopsy from last year saying it's "moot") Like David, I wondered whether I really needed such an agressive treatment (although absent definitive clinical studies, I would opt for it all over again). Here is a link to a study I've seen mentioned before but suddenly it has moved up in my Google news retrieval as it gets cited more and more. Presence of Human Papillomavirus Infection Has No Prognostic Value in Tongue Cancer Patients 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | This article describes the conclusions of one researcher that studied the charts of 87 patients and tries to dispute the study published in the Journal of Clinical Oncology, Feb1, 2008 which studied over 45,000 SCC patients. I think proper weight should be given when weighing the 2 conclusions. Certainly a lot more information is missing about HPV and perhaps early conclusions reached may change over time. In November the NCI's Head and Neck Steering Committee will convene a "state of the science meeting to help identify and prioritize research needs and to lay a platform plan for the development of future clinical studies to advance the field". My RO, Dr Andy Trotti (Moffitt)will share a panel with Dr Maura Gillison (Johns Hopkins) and HPV will be a hot topic.
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Likewise my Insurance does not pay for HPV testing of the tumor and my Doctors tell me currently HPV (or EBV) does not change anything. Never-the-less it would be nice to know the cost for this test. Last week, my ENT basically said that at this time the review ("study"?) of 45K old cases (1972-2004) is an interesting statistical exercise but has troublesome limitations. He noted that the conclusions must be collaborated by significant studies from known HPV linked cancer case. The small study (cited) by Roswell Park Cancer Institute, Buffalo, New York was unable to collaborate those conclusions and I was told U of T - MD Anderson is also now trying but to date is also coming up well short. Hopefully they will publish something soon.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | As someone who lectures to doctors about this subject a numerous professional society meetings, and at university cancer programs I can tell you that the lack of CURRENT understanding and knowledge of the HPV issue in the treatment oriented (not research) sectors of the medical and dental communities is mind-boggling. Whomever is questioning the impact, and the long term issues related to HPV16 is behind the curve knowledge wise. I have recently been to two HPV conferences at which everyone acknowledged the severity of the issue, and the CDC is in the process of assembling a white paper on what we know today. While this is in pre publication stages, I have seen the H&N parts of this and the conclusions are not in question. If anyone doubts the impact of oncogenic HPV, they are oblivious to the the concern that it is reaching outside the realm of oral and cervical. The article that was linked to in this thread was already in the OCF news section. It takes about 1 minute to sign up for the OCF RSS news feed and you would get all this stuff in a timely manner if you are interested. It is true that what we know is far out paced by what we do not know. And insurance companies are not going to pay for a test that does not change treatments, it's an academic point at this stage of things. We are years away from clinical trials that can elucidate if different treatment modalities for HPV+ lesions at specific stage could be altered with success. When that question is answered they will likely then do them.
Last edited by Brian Hill; 08-20-2008 06:50 PM.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Brian
Thanks. I just signed up. Much better than using the Google news feature topic selection although that does alert me to when articles are getting more play in MSM. More reading to do. Tom 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Brian, Related to the case review in question: Incidence Trends for Human Papillomavirus�Related and �Unrelated Oral Squamous Cell Carcinomas in the United States Are you aware of a study in progress that will collaborate the assumption the HPV link SCC has a significantly higher prognosis?
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Two years ago my insurance company paid for my HPV test which ran about $600 if I remember correctly. I have United Health Care. Brian, On a side note and you can PM if you would rather...Do you have a current list of all the certified testing sites for HPV in the U.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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | My Ins for the HPV test, LOL But sure did ignore a lot of Hospital Charges. I owe Ohio State alone over $17000 and that doesn't count the others. I think Ohio State should have ate that bill for making me worse instead of better. Loss of teeth and tongue rad implants for saying I didn't need rads or chemo. But I have to live with it.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I know I typed paid in that statement . LOL Maybe my puter keyboard is messed up. Maybe too much coffee for it. got the caffiene blues now.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Brian and Dave THANKS for the reassurances that this particular study is an anomaly. Having had time to wade through the OCF RSS reports, I feel much better about my prospects. EZJim THANKS for putting the HPV reimbursement issue into perspective. While my insurance won't pay for that, it did cover over $250,000 in bills from the Lombardi CCC with just $4,000 out of pocket for me. (not even three root canals which are not covered) 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
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