#79107 08-21-2008 12:35 PM | Joined: Jan 2007 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2007 Posts: 27 | My mother (she is in her early 60s) has been suffering from recurrent oral cancer for several years now. She has never smoked or drank. She generally tried to ear healhty food and maintained a pretty normal weight. Her test on the high-risk HPV strains came back negative. Yet, what started as white patch/leukoplakia in her mouth, has developed into cancer. She lives in a pretty old apartment building in New York City. I wonder if there are any other carcinogens that can either cause or contribute to the development of this desease. I read many web sites on the causes of oral cancer. I could not find much information on causes other than smoking, drinking and HPV. If you have any information or thoughts on that, let me know. Thank you! | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | These are my thoughts: Those of us that can't find a cause for our cancer have a choice of driving ourselves crazy trying to figure it out or try to find a way to put it to rest. I was 59 when I was diagnosed almost 3.5 years ago. I haven't smoked since I was 18 and I was less than a social drinker. My scc was on the lateral border of the tongue and there has never been a documented case of HPV induced scc in this location. I was not tested for HPV, but I can say that it is highly unlikely that it was the cause. As time goes on, I am less and less concerned about what caused it and have put my efforts into educating my colleagues so that they can perform a comprehensive oral cancer screening for their patients. I hope that you can find a way to let it go because it's unlikely that you will find the cause. Jerry
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 | Amen Jerry! I was diagnosed with an aggressive non-Hodgkins lymphoma at age 28, borderline ovarian cancer at age 42 and now oral cancer at age 45. I don't think I'll ever know what caused any of them, ever! But what I can do is take the lessons I've learned from all of this and get out there and live my life as best I can, choose to be healthy, eat right and exercise and not worry myself about things I can't change. Life is better this way and I am so much happier.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | Jerry- Very well put. You stated exactly what I've been feeling about finding a cause. We'd all be much better served in recognizing symptoms and making sure we don't blindly believe a health professional who says everything is ok.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | 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 | I am sorry but I believe that the surest way to cure something is to identify what caused it. I think it's our responsibility towards future generations. If we don't start to ask why then what are we saying to those that get cancer or any other illness after us?
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | I'll leave that quest to the researchers, David. They have my tissue and my blood work, and as soon as I finish it they'll have a whole questionnaire about my life - diet, work, where I've lived, etc. But for me, moving forward in my life, its immaterial.
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: Jan 2007 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2007 Posts: 27 | [quote=wilckdds]These are my thoughts:
Those of us that can't find a cause for our cancer have a choice of driving ourselves crazy trying to figure it out or try to find a way to put it to rest. [/quote]
Jerry - let me clarify why I am asking this question. I am not trying to drive myself crazy, but I want to understand whether something in her current environment/living conditions can be a contributing factor to the recurrence of her oral cancer. That is, if there is some evidence that if, say, old paint, contributes to the development or oral cancer - or some other construction materials (like asbestos or lead paint) used in old apartment buildgins, I would try to find her a new apartment. So, my interest is not to answer "eternal questions" or find what to blame, but to see if I can isolate what can be contributing to my mother's desease and remove that element from her life to increase the chances of recovery and, therefore, survival.
OC is not very well researched yet. And most research stadies focus on smokers and heavy drinkers as they constitute about 75% of those affected by the desease. Therefore, I was curious whether some folks here who have not smoked/drunk had any experience that would indicate any other factors that could cause it. | | | | Joined: Jul 2008 Posts: 101 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jul 2008 Posts: 101 | Did your mom have a biopsy where pathology actually confirmed leukoplakia? it could be other things like lichun planus, which can be treated to prevent recurring cancer. let me know.
FIL completed treatment 10/08. CG to father in Law in india who had SCC oral tongue T2N2M0. FIL underwent surgery, neck dissection, IMRT, and erbitux without losing weight or getting nauseated. Completed October 2008. SO far so good.
| | | | 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 agree with Margaret. We have enough to worry about, at least we that have been thru the mill and a couple of wars with this stuff , to worry about the whys. We have some life left to live and enjoy. Lets live it and if something would hapen to enlighten us as to the why we have it, then we can post it for everyone. Have an enjoyable day all. Old has to say what he thinks here. But that's just me.
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: Jan 2007 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2007 Posts: 27 | [quote=marma]Did your mom have a biopsy where pathology actually confirmed leukoplakia? it could be other things like lichun planus, which can be treated to prevent recurring cancer. let me know. [/quote]
Actually, I do not recall now for sure. Initially, it was some suspicious looking patches in her mouth that Oral Pathologist/Dentist had noticed and said that they look like they can be pre-cancerous and should certainly be removed. Later on, another dentist/oral surgeon took a biopsy and that one came back with squamous cell carcinoma, which started it all. After the first surgery, doctor thought that my mother was cured, most likely forever, since the pathology report was good, the margins clear. But it recurred again and again later on...
Last edited by NewYorker10; 08-22-2008 08:38 AM.
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