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Fran B. Offline OP
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Yesterday I had a visit with the oncology dentist and heard some interesting news. She deals almost exclusively with Head and Neck Cancer patients, so her experience is valid. She is an advocate for the early detection of oral cancers by the family dentist and has done some real work publicising this in our community and at national conferences where she speaks to dentists and oncology profesionals.
As a non-smoker I was taken aback a little to hear that "generally" the form of SCC developing in my group was the more aggressive kind. Does anyone have links or info that would lead to some more illumination on this very puzzling situation?
The frustration that she and other Onco professionals have with smokers who refuse to quit despite their diagnosis has lead to a debate about whether they could ethically withdraw tx from someone who continued to contribute to their complications. (They can't)
Where we live in Northern Ontario, there are still alot of smokers, athough smoking is not permitted in any public places, including restaurants and coffee shops, I still see folk lighting up outside the Cancer Center. Their dangerous and insensitive behavior is maddening and insulting at the same time. That's my personal rant; but I am still curious to see if there are stats anywhere that might support the posit that SCC is truly more virulent in non-smokers. Thanks for your time in reading this long post.
Fran B.
P.S. I told her about OCF


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
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One of my husband's ENTs said the same thing based on his observations. He said something to the effect that with smokers if they quit they have removed what probably caused the outbreak of the cancer to their system. With nonsmokers, what ever triggered the cancer is still there. He didn't have any studies to substantiate this, just personal observation and his best thoughts.

My husband had a biopsy this week. I know that Dan Bogan says it ain't cancer till they say it is, but the new flash on the PET scan for no reason and a mass just showing up after clear scans 2 months ago sounds and looks ominous to me. This will be his 4th go around with SCC.

It would be interesting to see a study of the types of patients with recurrences and if the form in nonsmokers is more aggressive.

Bless your dentist for preaching the early detection to her collegues. I'm always on my soapbox about this. Dentists and hygenists look into the oral cavity way more than doctors. I'm convinced they are the first line of defense in an early diagnosis.

Lowanne

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Hi Fran,
I always thought smokers were on the wrong side of the fence with this cancer, but I haven't really looked that far into it. I have heard on this site that patients outside the risk factors seem to have a tougher go of it. I smoked off and on from the time I was 28 but quit after my diagnosis. I understand the people you see still smoking, even after a cancer diagnosis. That would be me but for something within my will power that helped me to quit. I thank my God for that power as I believe it will help me stay cancer free.
You know, I used to secretly smile at my coffee drinking, non-smoking friends that would say to me "I can't imagine being addicted to ciggarettes"..........mind you these were the same women that would say they couldn't even BEGIN to start their day without a cup of coffee and would get the shakes without it!! I realize coffee drinking doesn't carry the same risks as smoking, but when discussing an addiction I see no difference between the two.
I say a silent prayer for anyone who has battled oral cancer and cannot seem to find the way to become smoke free. I know what my fear of the cancer coming back is like, I can only imagine that it's twofold for the ones that continue to smoke.
Let us know what you find out on this subject, I would be interested to hear it.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Fran
There are so many maybe's in this disease. Bob smoked a ton since he was 11 years old but reality is was his cancer caused from me or him or from someone HPV positive we met early in our lives??? We are both positive now and know it's when and what is what happens?? I think everything has to be aligned to make this get you...You can't be angry at others...or judge thier behavior just be true to yourself and how you want to conduct your life. smoking is not the only risk factor and you can not control someones addiction....D


Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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Fran B. Offline OP
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Point well taken about addictions...I think we all have things that have overtaken our lives at some point which we wish we could change. In my working career I was very involved with helping folks conquer addictions through group therapy.
The real purpose of this thread is to find information about SCC being a more aggressive cancer among non-smokers and if there are any facts to support that notion. I'll descend from my anti-smoking soap box smile
Fran B.


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
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Tim Offline
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Please stay on the box! From someone who is in the forum because of smoking, and who has subsequently stopped, please keep pounding on the awful nature of the habit! We aren't bad people, really . . . :-)


SCC Right Tonsil, T2N1M0, Dx 12/04, Tx 40 radiation (180 rad), 8 Chemo (carbo), Tx ended 3/15/05, Selective neck dissection 5/24/05, 22 nodes, 4 levels, no evidence of metastatic malignancy!!! :-)
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My two cents worth, I smoked from age 18 til about 26. At age 44 I developed the sore on my tongue which was finally diagnosed as SCC. BUT, I heard over and over from my dentist and first oral surgeon, it can't be cancer, you don't smoke! (they both knew I had smoked when I was younger) Many months were wasted. Wellll, it was cancer! I have been tested for HPV and it came back negative. Not sure what any of this means, just thought I would throw it out there. Thank God the second oral surgeon only needed one look at it and knew. He scheduled me for surgery within two weeks! Have a great weekend everybody! Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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The HPV Connection worries me. I was diagnosed with HPV after my first son was born 11 years ago. I had a hysterectomy 10 days before Harry was diagnosed. I had an abnormal pap test 8 years ago and I just never went back to take care ot it. At 7 years I went in for my first woman exam since my second child had been born. Once again it was abnormal. I waited yet another year before going to find out what it meant. I was on the borderline for cervical cancer and I guess I was lucky. It was the HPV that apparantly caused the displasia.

After Harry was diagnosed (his being a non-smoker) I joined this forum and it was here that I first read about the HPV connection.

I have given myself grief ever since. I know that everyone will say that I should not blame myself, etc. etc.... but I cannot shake the feeling that his cancer is because of my virus. We haven't had him tested for HPV but I would guess he probably has it.

I was told that HPV doesn't have a treatment although my doc did offer interferon treatments which I flatly refused. He did say that it is very common and it does spontaneously disappear.

I know that speculating never gets anyone anywhere but I guess it is just nature to wonder.

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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I wish a few of you would read the great deal of information there is on the site, and links from that information to scientific articles about HPV. Start by doing s search right here on the message board since we have discussed this before. There is a great deal known about HPV. I disagree with your doctor: and published studies, not anecdotal evidence, suggest that patients with oral cancers which have HPV as their origin, have slight better survival rates. The main reason for this is an issue which has been discussed here before in detail related to field cancerization. I am traveling back from NYU to California, so I do not have the time right now to address this fully again, but the old posts are there in the search engine. Remember that we have a separate search engine that runs the main site and news section, which also contains great information about HPV.

Here are some quick facts that should hopefully spur you to read further. I have to work at the OCF booth at the dental convention in California with my wife and Mark (who flew out at his own expense to donate his time helping) this weekend, but if you are still confused about it all email me on Monday and I will go through it with you.

Smokers contaminate many other parts of their bodies when using tobacco; this "field cancerization " causes different types of cancers to appear at different times, in different physical locations, but all from the original source. It would not be uncommon for a person at various times of their lives, after a long period of smoking, to develop an oral cancer, lung cancer, or even esophageal cancers at different points in time, but all based on an original prime mover event; X amount of years of tobacco use. Hence their reduced survivals from oral cancer manifestations, since they have other subsequent cofactors and contributing disease that add to the issues leading to morbidity and death.

HPV in tobacco users can be a facilitator and a cofactor, besides being a factor unique to itself. For reasons, which are not understood at this time, some people are able to shed the virus. There are no symptoms that you have it, and there is no good test for males to know if they have it or not. But during your PAP/cervical examination for only 40 dollars an HPV test can be conducted, since the area being tested (the cervix) is small and well defined unlike the oral cavity. Many people have HPV 16/18 and do not develop cervical cancer or oral cancer, (even though it is well documented as the cause of 98% of all cervical cancers) so as with all cancers, we know that it is a certain subset of patients, with a certain genetic makeup, that are susceptible to it. What that genetic make up is, is still under investigation. But just like we found that the targeted cancer drug Irrisa worked 100% of the time in a 10% subset patient population of lung cancer patients, we will eventually define that subset of patients that will develop HPV related cervical and oral cancer SCC's from it as well.

Note please the Many news article on the new HPV vaccine soon to hit the world and that will greatly reduce the incidence of cervical cancer, and while the definition of which head and neck cancers it will affect is more obscure, it will have some positive impact here as well. There is no currently protection from the HPV virus, and the best that you can do is limit the number of sexual partners to lessen risk of contracting it. Condoms etc. are not effective means of avoiding transmission. There is much more to say about this, and I have read hundreds of scientific articles on the subject as a non-smoking HPV positive oropharyngeal stage four cancer patient myself, with a wife who is also positive. We are luck to have on our advisory board one of the most published HPV authorities in the world, Dr. Maura Gillison at Johns Hopkins, who has been a weal of information to me and via her many publications in peer reviewed scientific journals. Do some reading, and Monday/Tuesday we can continue this thread with more questions and the answers that I do have.


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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