#49518 02-26-2004 06:51 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Yesterday at lunch, I saw another survivor! He had all the signs: a certain facial hair pattern, a slightly reddish skin on the neck and a slightly drooping left shoulder (only one of us survivors would have noticed.) The radical neck scar was on the side away from me so I couldn't be 100% sure. Then when he got up to leave I had to ask. Sure enough Left tonsil SCC, radiation and 2.5 years doing OK!
That makes 4 people I have met locally that have this Cancer and I know there is a 5th because she posts here at OCF from time to time.
What I want to know is what is in our drinking water! The person I met yesterday never smoked. I want to know how the statistics are collected for this cancer. I want to know if we are having an epidemic of this crap. 5 people counting me in a population of 80K seems in the last 3 years like we have a much bigger problem! (I am sure there are more besides)
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#49519 02-26-2004 07:08 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Dec 2003 Posts: 116 | Mark, I have wondered so many times why this cancer seems to be invisible until you get it or know someone who has it...then you start noticing folks, like you did, with the tell-tale signs. This really lights a fire under me. I mean, I'm a fairly intelligent person; I pay attention to things; I am aware of medical and scientific news as much as I am of political and social issues. I've been thinking, how have I totally missed this? Have I been too busy and too self-absorbed to realize this cancer is such an agressive threat? No, I've decided that oral cancer may just be the red-headed orphan of cancers that nobody wants to be associated with (no offense to red-heads: I'm one!) Where are the warnings, the public service announcements, the billboards, the nurse-made bulliten boards in dentists' offices? I guess it takes Oprah to give attention to issues these days. Maybe we should give her a call. Sorry I'm ranting. It makes me want to start an advertising campaign on my own! Christine
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
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#49520 02-26-2004 07:46 AM | Joined: Feb 2004 Posts: 40 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2004 Posts: 40 | Yeah I'd like 2 know how I got this cancer! My dentist said when he was in school that this type of cancer may only happen once in his lifetime of patients - yet shortly after me some1else got oral cancer.
My surgeon said that he has seen an increase in young (I'm 40-not that young 2 me) women. They didn't know the cause.
BTW I felt kinda left out since there so much promo 4 those w/breast cancer. You know the pink ribbons & walks. Odd grrl out, that's me. :p
Dig.7/03 3cm+ lymph nodes & base of tongue tumor. Radical neck dissection w/removal of one neck muscle, laser removal of tumor. 47 sessions of radiation, 2 doses of Cisplatin & PEG tube 40yrs old non-smoker/drinker
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#49521 02-26-2004 08:00 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | It's all in the numbers Christine. 30,000 new oral cancer cases a year is relatively small for a disease (cancer) that overall kills 550,000 a year. Many consider this to be a "sin disease", i.e., a result of vices such as tobacco or alcohol abuse (although don't tell this to the folks who neither drank nor smoked) which are reported to be about 25% of the diagnosed population.
Certainly the poisons we have put in our food supply and environment must play a role as well as genetics. Unfortunately the science just isn't there yet with definitive answers.
Statistically, according to the ACS, the new case number has declined slightly.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#49522 02-26-2004 08:56 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi all Interesting thought clusters... my Dentist has 3 of us in two years... he said he would expect to see no more than one in his whole lifetime... But I have smoked stopped 6 years ago.. and I still admit to a glass or two of red wine... Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#49523 02-26-2004 10:02 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Dec 2003 Posts: 116 | Well, my husband takes complete ownership of his tobacco and alcohol use. I know there are many with this disease who never smoked or drank (or who did so on a very minor level). He smoked a pipe for 29 years and was a social drinker. He knew the risks, yet like so many continued with a tobacco habit that was very hard to shake. He did not realize that you don't have to be an alcoholic for the mix to increase your oral cancer chances so significantly. Would that have made him stop sooner had he known? I don't know. But, the point is that it seems to take somebody famous to raise awareness about any kind of disease these days...I'm thinking Michael J. Fox and Mohammed Ali. Roger Ebert had a salivary gland tumor a while back and noticeably has a speech defect because of it, but I haven't been able to find out much about his experience. Sometimes when I'm cleaning my husband's trach tube with a pipe cleaner I think about how often I saw him clean his pipes with one. That's a juxtoposition I'd like to see on a billboard.
Christine
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
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#49524 02-26-2004 10:23 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Christine Suppose the hardest thing about any cancer is that sometimes there are no answers... We all drive or travel in cars.. some will die... some will get hurt... my brother his wife and 11 year old twin boys escaped death by a whisker... life is precious.. but as fragile as crystal... heavy thoughts tempered with a glass of wine... God loves a gambler... Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#49525 02-26-2004 10:41 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I don't think that many of us think that our vices will kill us - the other guy maybe! Moments ago I just heard Dr. Dean Edell (on the radio) talk about the relationship (and sensationalism of the news media) about the so-called link between oral sex (caused by HPV) and oral cancer. (the actual rates are infintesimally low). He stated that 90% of all oral cancers are caused by alcohol and/or tobacco. So where did he get his numbers? And where does the 25% number fit in (non-smokers/drinkers occurence of oral cancer). 15% is a pretty healthy variation. I smoked and drank at one time in my life and always worried about lung cancer not oral. About raising awareness - look at the way gays handled HIV. Hepatitus C is a much bigger killer than HIV yet it doesn't get the notoriety(or the funding - not to mention that they estimate 4.5 million cases of undiagnosed Hep C in the US today). But they got a disportionate amount of funding for HIV research as a result of their efforts (not that it won't have long term benefits for us all). This is a major part of Brian's behind-the-scenes plan of attack to get the message out. He has enlisted celebrities. All of this takes vast amounts of money so don't forget to donate some tax-deductible dollars for the cause. Regular monthly donations would be greatly appreciated I am sure.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#49526 02-26-2004 11:50 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2004 Posts: 162 | Indeed. We just lost a guy from work a couple of months ago to metastatic oral cancer. I think cancer, like other diseases, has been highly politicized. Which is why some get the all the press at the expense of others. You can bet that as the news of the HPV link to oral cancer is publicized more and more folks will be looking down on it's victims. Not that I really give a damn what other people think of me. Like other folks, when I was practicing my vices I was more worried about lung cancer and heart disease. I would have never dreamed in a million years that at age 40 I would wind up with a tumor at the base of my tongue. -Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003. Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#49527 02-26-2004 01:28 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Sep 2003 Posts: 139 | Well, folks, for those of you feeling left out......I have had breast cancer and oral cancer. Guess what? Neither is fun! Breast cancer may get a LOT more publicity and funding to be sure but it didn't make the diagnosis or treatment any easier to bear. I HATE all cancers.....my past habits contributed but let he who has no sin........well you know the rest. God bless Judy U PS Really bummed out with Packer's passing so am angrier than usual!
Judy U Stage I SCC floor of mouth, left radical neck dissection 8/03
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