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I am just curious what the general consensus is on this question. Did getting a diagnosis of cancer make you take a hard look at your lifestyle, such as eating habits, exercise, stress etc. or have you maintained as per norm (other than what treatment itself altered)?

I have found I am eating healthier and taking vitamins and supplements and trying to reduce stress and get better rest ... I have realized how hard I was on my body, eventhough it did not seem that bad, until I looked closely ... I figure I did not "CATCH" cancer from anyone, so I had better pay attention to my body saying it was weaker than i thought.

I have been really surprised that none of my doctors through this have mentioned anything to do with living healthier to try to reduce chance of recurrence? I read it everywhere but do not hear it from them... I guess their focus has to remain on getting you over the diagnosis, and worry about prevention on another day? But hey, we are adults and can figure it out ourselves when changes need made.

I would sure like to know the stats on how much better people fare after treatment if they make changes needed for healthier lifestyle vs those who go on after treatment as per norm ... as in less chance of recurrence ... anyone ever read anything on this? i can't find actual studies on it to get real stats.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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During my treatment I always said that if God had meant for me to have cancer, then He wouldn't care if I ate cake or green beans (I've always had a bit of a sweet tooth). That was just my way of looking at things.

I got cancer and I had none of the risk factors - I exercised a lot, didn't smoke, hardly drank, and the only guy I've ever kissed or done anything more with is my husband (and I'm the only person he's done anything sexual with as well). So, I figured I just got the short straw this time and it was nothing that I could have avoided. I had a conversation with one of my doctors about environmental causes since I grew up in "cancer alley" (I was born around the time that the term was dubbed so who knows) and that is one theory for my cancer but who knows really and I'm not losing any sleep over it. So, I haven't really changed anything in my daily habits. I eat less meat now, but that is just because it takes to long to chew. I actually exercise less at the moment because of my blood pressure and heart rate issues that I'm trying to get under control. So, I guess I'm trying to carry on normally. Basically now I'm just more aware of changes in my body.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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I never worry much about my life style, a few things have changed, I sure gave up smoking, I have no teeth now, would love a good old fashion STEAK, I eat way too many varietie of ceral now, but i have put back on 30 of the 70 lbs I lost. THe way I see it is, it must be in Gods master plan what happens to us and with us. I am stll a happy go lucky person tho.


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
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Rita,

That was one of the worst things I had to deal with when I was Dx'ed since I had devoted my entire adult life to exercise and eating what I was told was healthy. My weight never deviated more than 5 pounds up or down since high school. If I read something was good for you, I started eating it and like wise if I read something was now bad for you, I stopped eating it. I was a casual smoker in high school even though I was on the wrestling team but I stopped all together in college where I also wrestled. I was at best a casual drinker after college. So when I was told I had Stage IV cancer from tobacco I flipped out. I was embarrassed to tell any of my employees or even friends since I preached daily about the benefits of exercise, good food habits, not smoking, etc. I was like look at me, I'm 58 or whatever and I ride my bike 100 miles a week, never been sick, blah, blah, blah and then I'm told yeah that's OK BUT you have a 60% of dying!!! That's why I felt vindicated when I tested positive for HPV.


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.
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Rita,

Currently, my lifestyle habits had been forced upon me. Liquids, liquids and more liquids! Of course, I just finished tx November 4th and I have a long slow road to recovery. Since my diagnosis I haven't really thought of a lifestyle change but I have gotten away from cooking and tend to get back to cooking some fabulous family recipe's! I haven't thought of changing my life but I have thought about appreciating life more that I have to stop worrying about others. I have always loved great food and I can't wait to explore those tastes again. I never did anything too much--I was not a typical person for OC...a very casual drinker, non-smoker and very good oral hygiene. After my OC, I have realized that I am the fourth person in my family with OC/neck cancer...the fourth. I assume we have a weak gene in there somewhere. I am not going to limit myself...But, am I going to smoke a cigar? No. Am I going to have a beer or glass of wine? Maybe...Am I going to have a drink a week? No....I am going to go back to my life and try to appreciate it more...One can do everything right in life but things happen. There are no guarantees in life.

When something happens in life whether it's good or bad...embrace it, learn from it and then pass it on to others in a meaningful way.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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Hi David,

Excuse me for butting in on this conversation however I'm really curious about your diagnosis being attributed to smoking. How exactly was this ascertained as was it just an assumption?

Thanks.

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David,

I was told by a MO who follows likely HPV cases at my Cancer Center that your Dx, if you understood it correctly, was very unprofessional and troubling coming from a NIH CCC like Moffitt.

She pointed out that is normal to discuss the risk factors with patients and point out any that might be probable, but casual smoking in high school and college some twenty or more years ago isn't a likely much less definitive risk factor.

There are still about 20% of OC cases without risk factors and no known cause.

Have you ever spoken to the department head at Moffitt about this?



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

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Rita,

The biggest changes I made after my lymphoma diagnoses was to reduce stress. My diet, as compared to a lot of people, was never so bad, but my stress level was terrifically high. As I went along, I tried to position myself so that my career wasn't always so tentative and that I wasn't always waiting for the other shoe to fall. Of course, since then I've been treated for two additional cancers - but my stress level has been much, much lower!

Moving forward from here, I'm trying to make some really positive changes to my diet. As a matter of fact, I'm right in the middle of reorganizing my kitchen to make it more "chef-friendly" so I can easily prepare foods at home with the ultimate goal of dropping another 25 pounds or so. My nutritionist and I came up with a plan so that I don't drop too much weight too quickly, which would be really easy to do right now, so that my body continues to get the nutrition it needs to keep healing from my treatment.


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
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First off let me point out that I was Dx'ed over 2 1/2 years ago and they told me that I had "what they called the Old Foggies (sp) Cancer" and they went on to tell me it was called that because typically the people that get are old and have been sitting in bars and smoking and drinking all their lives. Their description, not mine and I believe this came from the nurses in the room and not my RO or MO. I said back to them that I hadn't smoked for over 35 years and I was a casual drinker. They responded, "what difference does it make, you still have the cancer." I mention 2 1/2 years ago because HPV's connection to H & N cancers was not to well known even at all the CCC's so I continued my own quest to find out what was trying to kill me and I was pulled to this site and it was here that HPV was first mentioned by a CG to her husband being treated at John's Hopkins and he was a non smoker, casual drinker, similar age and he had tested positive for HPV. What's that? I posted and I eventually made Moffitt send my slides up there to be tested and they confirmed HPV. Since then I have told everyone that posted non smoking that they need to be tested for HPV. I had to do this a lot more then than I have to now as HPV awareness is spreading.


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.
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Where I grew up, the old FOGGIES as David calls them, sat around with a cold beer continually, and played dominoes. I used to watch them and loved to hear them laughing and joking with each other. You know what? Not one of the dies of any kind of cancer... Old age got all just about all of them wore their bodies out by working too hard.Yep, the ones that didn't smoke chewed Mail Pouch.


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
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