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#176833 01-23-2014 11:29 AM
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Hello all:

I am 50 years old
I have 4 kids, ranging from 19 years old down to 8.
I have never smoked
I do not drink, ever.
I live a very clean healthy life.

Diagnosis yesterday - on a beautiful snowy day, that this thing under my tongue is in fact cancer.

I instantly went into my normal mode of - "ok, how do I fix this one".
Turns out I am not in control.

Going for CT scan tonight. Surgery next week.

1) wish I had more life insurance.
2) wish I had more $$ to leave my family.

So if I survive - am I professionally at a disadvantage?
Will I go into surgery assuming the doc will take just the thing that is the size of a dime and come out missing my tongue?

Talked to my kids last night - unquestionably the hardest thing I have ever done. Before last night I was invincible.. superman.

I am not afraid....
I am worried and sad for the other people in my life who count on me for so much.

So I don't know if this is what the forum is for. But there you have it.

for now.
Scott



Tamsin #176834 01-23-2014 11:31 AM
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Sorry to hesr your news Scott. Hope you will pull through xxx

Tamsin #176846 01-23-2014 03:12 PM
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Scott,

JMO but I would get at least 2 opinions and at least 1 from a CCC, comprehensive cancer center before I would decide what treatment I allow.


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.
Tamsin #176847 01-23-2014 03:39 PM
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Scott, welcome to OCF! You will find the best info and support about OC here. Read and absorb the info you find here and also on the main OCF pages. It will help you to understand that a diagnosis of OC does not automatically equal a death sentence, neither does a recurrence.

I LOVE the "just fix it" mode you went into when hearing your diagnosis. Thats exactly what I told my oral surgeon when he told me my bad news. If only it was that easy to fix. While it may not be easy going thru surgery and/or radiation with or without chemo it is doable and can be done. Sure it will get tough but you CAN get thru this. Even if you have after effect issues or anything that makes your life difficult after your treatments, you can still go on to live a very good full life. Its all what you make out of it.

For now, you will have a whirlwind of appointments before you settle into your treatment plan. Get a full dental check up and take care of pulling any teeth that might not get thru radiation (if you go that route?). Have a full blood workup done with testosterone and thyroid levels. Start making a list of everyone who offers their assistance, write down their name and contact info and tell them when the time comes you will let them know how they can help. Now is not the time to be proud, its ok to lean on others. I have always been a very strong, independent person and that was one of the hardest things Ive ever done, learned to lean on others. For now, eat!!!! Have all your favorites, dessert too. Its ok to gain a few pounds, if you are on the thin side push to put a few extra pounds on. If you do radiation treatments your sense of taste and swallowing capabilities may be compromised for several weeks, possibly even a few months. So eat now and enjoy all your favorites smile

One thing I learned during the wait between diagnosis and treatment, make your time count. Make memories with those who are most important in your life. By staying busy and making great memories with those you love it will help the time pass while you wait to begin the treatment phase.

It really does matter where you are treated. Here is a list of comprehensive cancer centers (CCC). They will use a team based approach with all the specialists together on the same page. A CCC usually has the brightest and most talented doctors using the latest technology along with tried and true treatment protocols.

CCC list

Wishing you all the very best with everything!!!


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
Tamsin #176882 01-24-2014 01:06 PM
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Scott,

Its not a question of "if", its "When" I get through this. You have every right to be scared. You are facing a lot of unknowns at this point. Its probably the worst part of the whole experience. Get your support team together and surround yourself with positive people. You will be able to do great things after this is done. Your life will change and you may notice that your life will be more fulfilling. Right now, hanker down, absorb the information and get a second opinion. Listen to the guys who posted before me to go to a healthcare facility that specializes in this type of cancer care. There are links on this site that list the facilities near your area. I was diagnosed on 11/7/13 and had my surgery on 12/26. BEFORE I made any moves, I made sure that I was comfortable with the treatment plan. Definitely post any questions you may have on this site. Its a gold mine of information. One last thing....YOU GOT THIS!!


SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
Scottdad #176998 01-27-2014 09:06 PM
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Scott,

Your post sounds eerily similar to my early thoughts and posts. I had a hard time early on, but looking back, I agree with the advice from fish. Go after it, stay and stay positive. Accept help from the family. My kids are a bit older, but I encouraged them to keep on with their lives as they supported me and we are close than ever. Hard to know your professional situation, but I am sure that will work itself out.

May be hard to do, but focus on getting better and you will retain your Superman title.

Best wishes.


Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin).
Tx completed 7/2013
MND 10/2013 (Pathology Negative)
Debridement for minor ORN 7/2014
Scottdad #177006 01-28-2014 09:00 AM
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Scott, your cancer sounds the same as mine. I am assuming it is under your oral tongue not down your throat (base of tongue cancer is often found there).

That said it's likely NOT HPV related and it sounds very much like your dr. is on track, however - a few things to think about.

If it is non HPV - then it can be an aggressive cancer. The NORMAL approach to this type of cancer is excision (often with a neck dissection with removal of a number of lymph nodes - often high 20s, to 40s - depending on what your CT scan says - and a clean CT does NOT mean that it is not in your nodes... this cancer can seed there and be too small to be detected on a scan - in other words - its microscopic). Often this will pop up after the primary is removed. That is why most ENTs who are experienced at dealing with tongue cancer of this type do a Neck dissection as well (this is NOT common practice with HPV related Base of tongue, or tonsil cancer)

You want to be at a ccc - this important as they have a team approach to treating you and often have other things available - dental ocology, radiation, and chemo - a hope lodge if it is out of town. I know a lot of hospitals are great and offer all three - but ccc's do cancer exclusively so they know what they are doing. Plus they also have clinical trials etc..

If it is the size of a dime chances are your dr will be removing double that size. Is he/she grafting it? My tumor was approximately an inch long by half an inch deep. They removed a third of my tongue and grafted it. I am a few years out and speak clearly and have only a small lisp at night when I am tired. I have also had radiation and chemotherapy. I had one node involved, that did not show up on any scans. My dr. told me from the outset that he was removing a large portion of my tongue, and 40 nodes despite a two clean cts and a clean MRI... and I am GRATEFUL.

I love the fact that your surgery is so fast. That's awesome...

do educate yourself. You are your own best advocate.

welcome, and hopefully your scans are good.



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
Scottdad #177013 01-28-2014 12:41 PM
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Scott,

I am sorry you are going through this. Your post brought back memories I had when I first found out I had Cancer. I also found the hardest part was telling my 5 kids and wife. As I had never smoked, did not drink, I never worried about Cancer.

You are correct about life insurance. You will not qualify.

I also felt guilt having to spend money on my own healthcare that took money out of college accounts. With a large family, I hated spending money on myself instead of the family. This guilt was purely mine, and it made my wife mad when I expressed my guilt.

Looking back over my past 1 1/2 years since I was first diagnosed with Cancer, I am encouraged. My life has changed, but in many ways it is the same. I was off work for only two months recovering from my surgery. I was able to work full-time during radiation, and post radiation side-effects. It was hard, and I hope and pray I never have to go through this again, however we all do what we have to do to beat this terrible thing called Cancer.

You will get through this. It sounds like you have a great support system. Just try to keep your Spirits up, keep positive. Do not be afraid, or vain like me, and ask for help when you need it. It may get rough, but it will also get better.

Best wishes and prayers.

Eric


SCC 9/2012 right upper right maxilla
Surgery 9/27/2012 to remove portion of right maxilla
DX-after surgery cancer cells in margin
RAD-33 TX ended 12/05/12
2/13-current-Severe Trismus and Radation Fibrosis
6/13-clear PET
6/13-Infection in radiation area of mouth, with surgery to drain infection
8/13-ended 40 HBOT treatments
11/13-Clear PET
3/14-Botox injections for severe Trismus
5/14-Clear PET/ 11/14-clear PET
Male age 53, non smoker, non drinker
Scottdad #177025 01-29-2014 12:21 AM
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Scott, Welcome to OCF, glad you have found these forums, sorry you had to my friend.

Rest assured that you are among people who have traveled a road very similar to the one you find yourself on now and are here to help you thru this experience.

I was diagnosed, six years ago as of 1/23, at thirty-three years of age, with a 28 year old wife, and two little boys, 4, and 7. The hardest thing I've ever done (and still even after treatment) was to tell my Seven year old I had cancer. His was response was "But daddy, I don't want you to die." Those words and the image of my sons face have been burned into my skull ever since.

I used it as motivation, to fight, to keep fighting. My favorite quote ever is in my signature, and my "why" is my family. My boys weren't, and still aren't ready for me to leave them�as their father I still have a few lessons to share with them. So I fight, every day.

It's a powerful motivator my friend, but my advice is to focus on what's right in front of you. The best advice anyone can give you after diagnosis is to get the absolute "best" medical advice available to you (and trust me everyone and their mother will give you advice, most of it bullsh*t).

NCI Designated CCC's have higher survival rates in cancer as they see more cases. US News & World report puts out a great guide every year ranking the top programs in the country, getting a second opinion from the top program in your area would just be prudence. After choosing your medical team, the only thing you can control is your attitude, and your nutrition, the rest is up to how your body responds to treatment.

Attitude and nutrition are just as important as your medical team. A large percentage of cancer patients die of either malnutrition, or infection..which is helped along by the malnutrition as the immune system isn't getting enough nutrients to fight them off.

Focus on hydration, and eating as much lean protein as you can ingest, as protein provides your body the amino acids it needs to throw at your immune system, and keep vital lean body mass. Keeping yourself as stress free as possible to help lower cortisol levels, which will help your immune response. You have an amazing resource in OCF's website and forums. The patient advocates on these forums have given you great advice already and are here with an ear when you need to vent�and you will need to vent wink

Surround yourself with positive people, and don't be afraid, or too proud, to ask for help. Nobody gets through this crap alone brotha.

Keep your chin up, you got this thing.

E


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.
Scottdad #177041 01-29-2014 09:00 AM
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Reminds me of the song by Allison Krause "when you say nothing at all" hope your computer gets better soon Eric smile


46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
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