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Kazy #173898 11-13-2013 12:15 PM
Joined: Jun 2007
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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If you have younger siblings that are between the ages of 12 and 26, you may want to talk with them (and your parents) about the Guardisil vaccine. This is a series of 3 shots given over a few months that will protect them from the bad strains of the HPV virus. So when you have your "talk", dont forget to include some informative info that will hopefully help protect them from ever dealing with things like cervical cancer, anal cancer, penile cancer, genital warts and oral cancer. I doubt your cancer was from HPV as its location doesnt fit the usual base of tongue and tonsil area tumors. Ive seen several young former smokers who have gotten OC (all under age 30). Their doctors told them they didnt cause their cancer either. In my opinion, the doctor is being kind to their patient and helping them to not feel the guilt of causing their own illness.

You have no idea all the junk that is put into tobacco. As a flavor enhancer, urea is added, more commonly known as the major component of human urine. I lost half of my lower jaw from my smoking habit. By continuing to smoke you are only making things harder on your body. You will not heal as easily and you sure dont need the added chemicals in the tobacco or in the smoke. The electronic cigs are slightly better but still only a substitute for the real thing. Help yourself and make the decision that you are going to fight then do it.... throw out the cigs! I know its not easy but you need to have this sink in and then follow thru. You CAN do this!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Kazy #173904 11-13-2013 01:52 PM
Joined: Oct 2013
Posts: 24
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Posts: 24
My sister was just diagnosed in early October. She turned 18 in August. She's never even had a cigarette in her mouth. From what I understand, this use to be a cancer that mostly affected 50 years old and older, but there is an increase on the diagnosis of young people. The most important thing for you to do is follow the treatment plan your doctors agree upon. You have to fight fire with fire, and oral cancer is often very aggressive. Best wishes and prayers for you and your family.


Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13
Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only)
Forearm flap reconstruction
Trache and NG feeding tube after surgery (both removed now)
Tumor 6.7 cm
All lymph nodes tested came back negative for cancer
Radiation- 30 treatments (ending 2/18/14)
3/20/14 Recurrence- tumors in both lungs; likely metastasis
ChristineB #173945 11-14-2013 06:14 AM
Joined: Nov 2013
Posts: 11
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I know cigarettes are bad and was aware of the risks before. But it's just kind of crazy to think that three years of social smoking only when I drank and then three years of regular smoking ruined my life THAT FAST. I guess it can happen. If my doctor was being nice, I appreciated it, anyway.

I never knew before, but many of my family members had cancer fairly young (found this out when I finally told my grandmother I'm sick). She had cervical cancer when she was in her early 30s. So at least I'm not alone, and most of them survived.


Age 27, mother of 4 year old girl
SCC(a)left side of tongue
Stage 3
DX 11/11/13
CAT scan 11/4/13 - biopsy 11/6/13
PET 11/18/13
Partial glossectomy/radial forearm flap/PEG tube/trach 12/12/13
Radiation/Chemotherapy 1/14
Currently NEC
RebeccaH. #173948 11-14-2013 06:15 AM
Joined: Nov 2013
Posts: 11
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I'm so, so sorry about your sister. frown The only comfort I have in this is that at least it's me who's sick and not one of my siblings, or anyone else in my family. I think that would kill me. I'm praying so hard for you and your sister right now.


Age 27, mother of 4 year old girl
SCC(a)left side of tongue
Stage 3
DX 11/11/13
CAT scan 11/4/13 - biopsy 11/6/13
PET 11/18/13
Partial glossectomy/radial forearm flap/PEG tube/trach 12/12/13
Radiation/Chemotherapy 1/14
Currently NEC
Kazy #173949 11-14-2013 06:26 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Joined: Sep 2006
Posts: 8,311
I doubt you will ever know what caused your cancer but it's VERY clear that smoking can cause all sorts of cancers including oral so the easy part is to eliminate that from your list of cancer concerns.

We do see many, perhaps 1/3rd of the people that have come here say within the last 6 years with a Dx of oral cancer that are neither HPV+ nor smokers and so far no one in the scientific community has offered an explanation.

Try not to beat yourself up over having the cancer, million and millions get cancer. The most important job now is to focus all your energy into doing everything possible to rid your body of these maliginant cells. I'm certainly not suggesting it's easy to brush aside all these negative thoughts popping up in your head right now but just realiize this is a normal part of the progression we all have to go through and the sooner you get past this stage the sooner you can focus on the real important stuff like curing you.


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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