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I am a 37 year old (yes 37) male from the Chicago area and am 2 days away from what I fully expect will be a positive diagnosis for right tonsil cancer.

After a few months of dealing with symptoms and going through tests to rule out causes, I am sitting here in a state of shock and disbelief that I have thrown my life away due to smoking. Everything that I took for granted in life is now gone (girlfriends, sports, career, etc)

I am trying to deal with this in a logical manner by researching the condition, choosing a hospital, getting my affairs in order, etc but realize what I need is support and someone to reach out to.

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Welcome to OCF! You will find all the info and support you need right here. Glad you have found the forum! There are also many pages of excellent info on the main OCF pages too. Please take some time to read the main pages about diagnosis, it will help you.

Hopefully your test comes back that its nothing serious! Its NOT cancer til the biopsy says it is.

Hope you have quit smoking! If not now is the time to do it. I was a smoker too and it took cancer for me to throw out the cigs. While smoking was the worst thing I could have done to my body, quitting was the best.

Please dont be so hard on yourself!!!! If (and that is a huge IF at this point) you have cancer then whats to say you cant have a decent life after you get treated? One thing cancer does to people is force them to face their own mortality which is a real eye opener. Another thing is guilt, especially if you had been a smoker. Do yourself a favor and think positive about the good things you have going on in your life.

Good luck and please keep us posted.


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
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Greetings, Mark - if it does come back as positive (and it hasn't yet) your life will change, but it doesn't mean everything is gone. You have youth on your side, and since you mention sports, likely health as well (but please ditch the tobacco0!
Take care, watch out for that Chicago traffic, and let us know your results.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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My husband was a smoker...quit 10 years before his diagnosis. His cancer was stage 4 but he is here almost 5 years later and just watched a terrific fireworks show with me.

I know you are scared and I know this all seems so overwhelming but you need to take this one day at a time and know that you have a good chance of coming out on the other side of this in pretty good shape.

Yes, read, read, read all parts of this site...it will truly provide you with the support and information you need should your biopsy prove positive.

Stay with us,

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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I didn't think Rob and I would be here either. April he had a sore on his tongue, went to his internist in May, ENT in late May and June 6th he was diagnosed with right lateral tongue cancer. We chose University of Chgo., he had surgery 6-21, a partial glossectomy and bilateral lymphectomy (61 nodes removed). He was out of the hospital in a day and has recovered well. We return again tomorrow for more info regarding future treatment. Our life is not back to normal , but we are confident in our path forward. Good luck, it can be a frightening ride, but support abounds. MaryAnn

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Mark,

We have a saying on these forums, it's not cancer unless a biopsy says it is, so before we start jumping to a cancer conclusion let's wait for the path report.

No doubt this stuff is freakin scary, trust me I was there at 33 with a 28 year old wife, a 7 and 4 year old son so I know the fear factor. If I've learned anything is to just take one step at a time and not look too far ahead or even worry about the "what if's" and deal with things as they happen.

Thankfully I found these forums and the angels who are the survivors and caregivers that continue to plug back in year after year. The've helped me deal with this cancer experience every step of the way, and we'll be here for you as you need my friend.

Keep your chin up my friend, let us know what we can do to help

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.
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Mark - you've already done the best thing for yourself in coming here. You will find the latest and best information available anywhere plus the experience and compassion of people who have been where you are. You are already taking steps to get in control of your health and that's good. The waiting to find out anything is absolutely the worst - so try to focus on all the good possibilities and don't allow the negatives to take over. My son was only 33 when he was diagnosed - he had lost everything too, but years later he is doing better than ever! Hang in there and check back here often!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Mark, welcome and hopefully you will not really have a reason to be here and your biopsy will be negative.

However, I am in suburban chicago, so if you can get to either the University of Chicago or Loyola (where I was treated) for a 2nd opinion -- I would go there ASAP. I lost 75% of my tongue, and I am living proof that you can survive a Stage III diagnosis. I am doing very well now 18 months post-surgery.

Let me know if you would like to chat on the phone. I would be happy to talk to you live. Just send me a private message.


DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
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Welcome Mark. 1st let me say you have not thrown away your life. Odds are you will have a great life ahead even if it is (BIG IF) cancer. I had stage 4 cancer on the right tonsil and finished tx 4 1/2 years ago. Aside from dry mouth and being unable to enjoy some of the foods I used to, I am doing great. In fact, I'm looking forward to a back packing trip next week. Also, at your age, unless you were smoking like 3 packs a day, it is probably not (or at least not entirely) tobacco related. Get testd for the HPV virus. Most of all, it bears repeating that it is not cancer til a biopsy says it is, and if it is, it is treatable. The tx is brutal but doable. Bedst of luck.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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Hi mark
As everyone has said you don't know yet! Whatever happens know that you will get through it. You have youth on your side I was told this helps:) I'm a year out and was diagnosed at 45.
Everyone here is so supportive and knowledgable so you came to the right place!
Jayne


Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
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Hey there! deejers beat me to what is was going to say - granted smoking can very likely kill you - if not from oral cancer - then from lung - however its very possible your cancer is HPV related based on your age and location. That said quitting smoking is very beneficial. I since it will increase your O2 level during radiation which is a benefit to healing, and has a direct impact on survival - studies show that the survival rate for people who quit smoking and increased their oxygen levels by walking once a day during radiation are higher over 5 years.not only that radiation (the standard treatment for HPV related cancer) sucks big time so once it's over picking up a cigarette not only might be quite painful but probably dangerous.

Try not to freak out.... It isn't cancer until the biopsy says it is - as everyone here has said. But if it is we're here... And definitely look to be treated quickly and at a ccc - take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Thanks all for the support, I find out results tomorrow.

Assuming the worst, is it possible to have dental implants for extracted teeth put in at the time of removal prior to radiation treatment? Or are crowns a better idea? I have a number of molars that have fillings and do not want to loose them all.

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IF you have to go through radiation, your oncologist will probably send you to a dentist to get any issues with your teeth taken care of before tx starts. The dentist will give you a flouride gel and trays to use to coat your teethe. The gel made me feel sick and I didn't use them as I should have and have had 2 teethe break off since my tx. Hopefully your teethe are healthy enuf to withstand the rads, But that's getting a bit ahead of things, hopefully this is much ado about nothing.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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Dear Marc,

I'm keeping my fingers crossed for you! We are all here for you, no matter what the results say. You life will not be over, either way. Here's to hoping that this is just a scare for you to put down the tobacco for good and to help others, as well.

I had oral tongue cancer (non-HPV) and never smoked and rarely drank in my life. I'm doing well 16 months later. I just hit a little glitch in that I need my tonsils removed. NOT because I have cancer, it's just a coincidence that I need them removed now at the age of 38...go figure! That might be just what you need, as well!

Please keep us posted. Do yourself a favor and call Ingrid, too! She's an amazing lady. There are lots of amazing folks here!

Best of luck,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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Good luck brotha!!


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.
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Results were negative, I found out this afternoon. I could not stop the tears afterwards. Biggest wake-up call of my life.

Thanks to all for the support, all of you are truly remarkable in my eyes.

I will never smoke again, who knows what the future holds but if I have people like you for support, anything is possible.


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Yea, Marc! I am SOOOO happy for you! I'm glad that you're taking this as a wake up call. You will make a huge, positive change in your life by quitting smoking.

I'm glad that we could help. Please come back any time to check in and let us know how you are doing smile.

Enjoy your good health!
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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Awesome news! Soooooo happy for you!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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EXCELLENT news!!!! Congrats on the negative results!!!! So happy you have given up tobacco usage smile


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
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WHEW!!!!!!!!!!!!!!!!!!!


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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That is so fantastic!!! smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Truly great! Hope you go your whole life without another scare like that.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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