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#114206 03-17-2010 09:12 AM
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Hi. John had an appointment with his ENT a couple of weeks ago. He told John that he had recently been to an ENT conference and that the BIG topic of discussion was how many young people and people with no smoking history were getting oral cancers and that these cancers might be linked to the HPV virus. He told John he was going to have his pathology re-tested for HPV. We found out today that indeed John's "base of tongue" cancer tested positive for HPV.

This might sound CRAZY to some of you but I was so nervous about finding out the results. I was hoping it was positive because I know that HPV positive cancers are more "cureable" but at the same time I felt so guilty wondering did I pass it on to him. I had some issues 17 years ago with cervical dysplasia that were linked to HPV. I have had no issues in the past 16 years. John and I have both had previous sexual relationships before we met so who knows where it came from but it's hard not to feel guilty thinking I could have passed something on to him that would give him cancer.

Last edited by slim; 03-17-2010 09:38 AM. Reason: content

Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
slim #114217 03-17-2010 02:36 PM
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Wanda

Yes, it does sound Crazy to blame yourself. Hello - it is just as probable that John got HPV from his "previous sexual relationships". Several of the HPV studies suggest that the number of previous partners is a significant factor as one partner's HPV just does not seem to do it.
The good news is that HPV Bot is more susceptible to TX.
Relax and quit accusing yourself - John's cancer is NOT your fault. Like myself, it is his own immune system that has betrayed him because millions of guys get HPV without BOT cancer.
Charm



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
Charm2017 #114219 03-17-2010 03:00 PM
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Wanda,

BY age 50 it is estimated that 80% of the female population has been exposed to HPV. As Charm says research has concluded that one is more likely to get cancer from HPV thru multiple partners but to me that's just simple probabilities.

HPV has been linked to OC especially in the Oropharynx region (BOT and Tonsils) for many years now. It has been estimated through studies that there is a 70% chance that if you have been Dx'ed with OC in that region and are a non smoker it will test positive for HPV.

Once acquired then it gets really complicated as to why a small percentage of us develop cancer but it is believed to be linked to our immune system. We also don't know why it can take decades for the acquired virus to go to the "dark side" or where it even hides until it causes us problems.

HPV is certainly not new to the OC scene. Believe me I have been preaching to the mountains since I was confirmed close to 4 years ago. Now most CCC's regularly test for HPV if the patient fits that profile but it is a shame that it still has not filtered down the food chain to all ENT's and even further down to PCP's.

Also even with a recent smoking history it is possible to have the OC caused by HPV and my experts are discounting their survival rate down from HPV non smoking but higher than HPV- smoking.

There is also a new patient that has been presenting themselves for a few years now and no one I have discussed this with has a clue and that is those that are younger than the typical HPV+ patient (< than say 50), non smoker, primary in the forward cavity, aggressive and HPV-. I have seen many here and Moffitt has as well. My RO, Dr Trotti just returned from a conference on HPV and he said this presentation was discussed for the first time to his knowledge.

Don't beat yourself up over the question of where or how the HPV was acquired because chances are 99% you will never know much less the "why" did it cause his OC. You should just be thankful that this bugger is easier to permanently kill than it's HPV- sidekick.


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.
davidcpa #114223 03-17-2010 05:36 PM
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David,

Am I reading you correctly that there are now cases of HPV+ cancers that are not BOT, tonsilar or oropharyngeal?


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
wilckdds #114231 03-17-2010 06:15 PM
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There are anterior of the mouth oral cancers that seem to have none of the current list of risk factors, and they are really aggressive. This is likely related to another genetic predisposition, but these young non smoking, low alcohol consumption, HPV negative people are surfacing. The question is are they something new, or are we just now noticing them?

You have to realize how far behind the cure the medical dental community has been in all this, and still is. 10 years ago when I went through treatment, HPV wasn't even a known risk factor. But there I was a never smoker with tonsil cancer. So it is possible that these new young people have actually been there all along, but because lack of scientific interest in the disease itself, and the lack of public dialog about it, and the amount of research (lacking) into the etiologies besides tobacco /alcohol, it is possible that we are just now seeing something that has been there all along.


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.
Brian Hill #114242 03-18-2010 06:24 AM
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Not sure about HPV causing OC in other regions of the mouth it is attracted to the squamous cells but what I was trying to say was that in 70% of the cases of OC in the BOT and Tonsil areas they will test positive for HPV which also means that in 30% of those cases HPV is not a factor.

I was also trying to say that one can get OC (in the BOT and Tonsil area) and test positive for HPV AND still have a history of smoking and in those cases Dr Trotti says they are more aggressive than HPV+ cases without a current smoking history but less aggressive than a HPV- patient.

Test in 1 hour!!


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.
Brian Hill #114244 03-18-2010 08:16 AM
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According the this article Stina Syrj�nen, Ph.D., D.D.S., in Finland is credited with formally linking cervical cancer to oral cancer and published the first evidence of that connection in 1983 (twenty seven year ago).

http://jnci.oxfordjournals.org/cgi/content/full/95/9/638

I thought Maura Gillison, M.D., Ph.D is credited with proving the long suspected HPV link to OC.


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

DonB #114257 03-18-2010 06:08 PM
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There have been hundreds of articles that talked about HPV and oral dating back decades. They were observations of single patients sometimes, small studies, or often just anecdotal, single institution's experience, publications. Gillison, put the nail in the coffin with a study that took all the words "maybe" "could be" "worthy of further exploration" out of the dialog.

Ever since the cervical confirmation, there have been many isolated findings of HPV in various incarnations (#16, 18, 33, etc.) being tied to cellular event cascades that lead to a malignancy in oral. If you look at Gillison's work, not only did she put the issue to rest, her subsequent publications in peer reviewed journals defined the anatomical sites it occurs in, demographics of those likely to have the disease, transmission mechanisms, and so much more, continually building on her early work. This continuation of unveiling more and more about the situation is what she is recognized for.

OCF is sponsoring a gathering of 14 HPV experts from around the world for two days in London late this summer, to put together some formal "what we know" position statements, that will be published and presented at the following World Oral Medicine meeting in London shortly thereafter. There is little question that as in most things, researchers from the world over, all work in concert, each elucidating a small detail that allows others to build on the knowledge base. Synergy.

Please also note that what you are linking to here is a news story, which is not the same as a peer reveiwed publication, even though it apears in a journal that has them. It contains the authors' opinions mixed with facts. That doesn't mean that his opinions are not valid, it means that they are exactly that.... his opinions and those of the people he has quotes from. The article is also two years old, and there have been many robust, peer reviewed publications since this was written, that make his statements less valid today than they were at the time. One that resonates with me is is statement that oral cancer is rare. It is not. in the last two years it has gone from a world incidence of about 400,000 per year to 600,000 per year, which hardly seems rare to me. Such is the nature of science and scientific knowledge.... it evolves.

Lastly, note that Dr. Sudbo referenced in the article, was discredited and is no longer a researcher, for falsifying data on oral cancer studies to obtain funding. His research was related to ploidy of cells, and a very promising world wide effort of many researchers working to understand the nature of this issue in being able to determine high risk patients, was trashed before we ever learned if it was valuable or not.

I would also like to state a personal bias. Dr. Gillison is a member of the OCF science advisory board, and OCF has contributed funding to her research work since 2004 at both Johns Hopkins Cancer Center and the James Cancer Center where she is now. I am grateful to have a relationship with her that allows me to learn at the hands of someone way out of my league, who will take the time to ensure that I understand the facts correctly. She is a pure researcher, she states what the science states, without personal bias related to the outcome.

Last edited by Brian Hill; 03-18-2010 08:44 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.
Brian Hill #114302 03-19-2010 01:55 PM
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Brian,
You are correct that the link I provide was to an old article that might have reflected the author's opinion.

So, here is direct link to a statement from Professor Stina Syrj�nen where in she states:
"In 1983, our group presented the
first evidence of the association of HPV infections
with laryngeal and oral carcinomas, starting a
new era in HPV research."
http://www.biocity.turku.fi/fileadmin/user_upload/BioCity/syrjanen.pdf

The author's reference to a researcher who was later discredited for falsifying data is sad, but I don't believe this has a bearing on Professor Syrj�nen's seemingly exemplary body of work.

I thought the "HPV link" could not be proven until the development and general availability of technologies (including PCR to synthesizing short chains of DNA) in the mid 90's and Dr. Gillison's work (one of several efforts in the 90's) finally proved the connection and ended the debate.





Last edited by DonB; 03-19-2010 02:22 PM.

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

Brian Hill #114323 03-19-2010 07:55 PM
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I'm not sure where this conversation is going, a Medline search will also come up with other studies (as I said before most minor observations without conclusions) that date into the 70's. I guess the point that I wanted to make was that TODAY what we know is coming out of a group of dedicated of researchers that are greatly expanding the knowledge, and Gillison is a core part of that group. Also that OCF is tied into that group, and what we put on our HPV info page, is the current thinking on the subject. Who turned over the stone first is not important to any of us today, it is what we are revealing every month now, which is expanding very rapidly our understanding of things that are important to making good choices in our lives and in treatment.

This is an article from Johns Hopkins (not a study) that references some of the work of the CDC group that OCF is part of looking at the total burden of HPV in many cancers and disease states. It also comments on Gillison some. Note OCF's credits for financial sponsorship of the work talked about at the bottom. (Thank you to many OCF donors).

http://jhu.edu/~gazette/2009/20jan09/20needed.html


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.
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