| Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | I didn't read anyone asking "why me" just "why". For those that know the why, alcohol, HPV, tobacco etc...it's a peace of mind thing. I've never cried "Oh sweet baby Jesus, why me!" but I have asked the question, WTF caused this so I stop doing whatever I did. I totally agree with JP in the fact that Dr's and the medical community spend the majority of their time treating symptoms and conditions rather then getting to the core of the issue or the "why". If there's doubt in that at all, just take a quick trip to your GP and tell him a symptom you are having and see how fast they write you a script to address the symptom and not the cause. Personally, I never pitied myself for getting this disease. I stood there while my ENT doled out the stage 4 diagnosis and just asked "How did I get this? What are my odds? and how much time do I have?" so I could make the decision to either go through the treatment/surgery or spend the remaining time I had left making the best memories I could with my wife and sons. What dissappoints me is that most Dr's don't have the sack to tell you upfront and honestly anything really in fear of malpractice suits. Spinelessness annoys the hell out of me. Good thought JP, and good luck Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Well, true to my Catholic upbringing, I have to confess that I have wallowed in self-pity, asked "Why me" and that was even before I had the recurrence. When the cancer came back, and I had to have surgery so I will never eat again, I even echoed Jesus's words on the cross and cried out to God [quote]" From the sixth hour until the ninth hour darkness came over all the land. About the ninth hour Jesus cried out in a loud voice, "Eloi, Eloi, lama sabachthani?" ["Eli, Eli, lama sabachthani?" in King James Version Bible] -- which means, "My God, my God, why have you forsaken me?" (Matthew 27:45-46, NIV) [/quote] That's why I am always amazed and astounded at heros and heroines like EZJim & Christine, and even more impressed with the youngsters like EricS and Suzanne who actually have every reason to bitch & moan at getting this "old persons" disease. So for any OCF posters who read all the uplifting positive posts, don't feel bad if you are depressed or angry or self-pitying, I have been there and done that. One of my New Year's resolutions is to just limit my self-pity to 15 minutes a day, but do it the entire 15 minutes in the hope that it will get boring and I move on. Oh, and just to stay on topic with this thread: I think it is environmental. DonB has posted several links to a noted Cancer researcher who attributes his cancer to pesticide in his childhood France. I rode engulfed in veritable clouds of DDT spraying from a truck in New Jersey for mosquitoes on my bike, pretending to be an airplane in the sky. But I no longer care where it came from. I just hope it stays away this time. 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
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | I was 58 at diagnose time. Led a good life no flags. my daughter is a bio-engineer at MIT. She said it was just the way it is and get over it. ( in a nice way) she explained that we all have mutating cells in our body every day. Remember we have trillions of cells. Almost always, our incredible immune system catches them and kills them. In my case one got away! I also has SCC of endetermined orgin. The doctor thinks that it was possible for the original site to he done away with by mty imune system after is sent a couple of cells into my lymph system
Who knows? All I knew was that by the luck of the draw I had Cancer in my neck. What mattered most was not why, but to gear up to fight it at 100% of my energy.
Hey maybe it was luck that I am clear now, I just don't know.
All I do know was I had cancer, the treatment was was way harder than an ironman, I am getting back to normal. My biggest change is that every morning when I see the sun riseI appreciate I have a nother day on this side of the green. I appreciate my family and my friends who helped me so much, I guess I appreciate life a bit more Sorry to ramble
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | 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 is no longer an old foggies cancer. For the last decade while tobacco use has declined, OC has increased and that increase is now attributed to mainly HPV. As I have noted in the past year to 2 years we have started to see a new "type" if you will of patient who usually has a Primary in the tongue but is young, non smoking and HPV-. While HPV has been found to be the cause in appx 70% of all new Oropharyneal Primaries (BOT and Tonsils) it has not been associated to my knowledge with a tongue Primary. When I asked my RO, Dr Trotti, at Moffitt if he has seen similar patients he responded yes and when I asked him what he thought might be the new cause he said he didn't know but added "maybe a new strain of HPV or another virus." I was one of the first at this site to present myself as questioning what caused my cancer since I didn't fit the "mold" and it was actually through another poster here that I was lead to the HPV test. Previously I had met with a lot of resistance in me asking why as I was most always met with "what difference does it make, you still have the cancer and we have to treat it the same way." I found that statement particularly frustrating especially coming from the medical field where one would think they would as curious as I was. I also met a lot of resistance from the posters on this site since probably 90% were tobacco users and the other 9% I guess didn't care. 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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | FYI,
Apparently all cancers have their own unique stem cells that are the basis of the cancers start and growth.In 2007 the University of Michigan identified the stem cells for oral cancer.
From the web site
In 2007, scientists at the U-M Comprehensive Cancer Center identified cancer stem cells in tumors removed from seven U-M patients with head and neck cancer. We believe these stem cells are the "root cause" of cancer - the cells that drive its growth and are responsible for metastasis and resistance to therapy.
[color:#3366FF]Because they were discovered so recently, less is known about head and neck cancer stem cells than breast cancer stem cells. UMCCC researchers are studying head and neck cancer stem cells to learn how they work and how to kill them without harming normal cells. Our goal is to develop new therapies that could help patients with head and neck cancer avoid the invasive surgery today's physicians must use to remove this type of cancer.[/color]
This research is very interesting and is targeted at the Root cause of this desease on a cellular level.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | I don't think that trying to find a link is the same as a pity party, but in case you want to know, Jon, it was probably the extra drink that links us. Or maybe it was the corn chip. Not the extra veggie burger - I've had just the right amount, never an extra.
Maybe it wasn't the corn chip. Our bodies are complex chemistry labs that don't respond with uniform results.
Happy New Year, Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | Long-time posters have heard this before, so I am responding to the "Why?" posts of the new members. None of us will ever know the causes of our or our loved ones oral cancers, but it is natural to want to know "why" so we can perhaps prevent recurrences by reasonable elimination of what may be causing the cancers, for example, "stop smoking". Poster Linda Rose and myself have wondered about the metal (esp. mercury) in fillings and crowns. She mentioned a site "toxicteeth.org" where doctors and researchers have been mounting a campaign to do further study on this possible link, keeping in mind this would be an extremely small percentage of OCC patients whom this could affect. I will use my husband as an example. He has had 3 or 4 SCC cancers (although the lip cancers are probably sun related) and they all seemed to occur right by a filling or crown, plus he had leukoplakia and lichen planus (laser treatment eliminated most of that)so there could also be a causal effect between the amalgams and the lichen planus/leukoplakia...a "bridge" between the two, causing cellular changes. He has since had all his crowns and fillings (yes, fillings!) replaced with porcelain, and has had no problems since then. I am not saying this has solved his problems forever or even if there is connection, but I do know several of his doctors have all stated in recent appts that "his mouth has never looked better". I pray this continues, and I understand this isn't the answer for most people but it seemed to help Dick, who, btw, never smoked, not a drinker, and no HPV. Hope this addresses one small part of this question-that-can't-be-answered-simply.
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hi Jon, As a non smoker and very limited drinker, I am somewhat in the same situation as you. As far as I know, there are no documented cases of oral (mobile) tongue cancers being HPV+. I have read that approximately 5% of oral cancers are of unknown origin. After almost 5 years, I guess I have just learned to live with the fact that I will never know where it came from and will continue to pray that it never comes back.
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"
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Jerry, From what I've read, there have been cases of HPV+ tumors of the oral tongue, but they are very rare - around 2% or something - so statistically insignificant, but not unheard of. - Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Margaret,
Please let me know where you read this if you remember. I would really like to see it.
Thanks.
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"
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