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#148262 - 04/14/12 12:42 PM Newbie  
Joined: Apr 2012
Posts: 32
KenEggman Offline
Contributing Member (25+ posts)
KenEggman  Offline
Contributing Member (25+ posts)

Joined: Apr 2012
Posts: 32
VA, USA
Hi I'm Ken, a 48 yr old, scared, recently diagnosed with SCCA of the tonsil. Four days post-surgery, waiting on PET results and treatment options. Do not have the staging yet.

As I learn where SCCA of tonsil comes from, I attribute my 20 year of smoking (which I stopped 14 years ago), and alcohol consumption to cause. Maybe the cause is HPV, I have not found out yet.

I want to learn how I can fight cancer, what I can do to stop continuous growth, and try to reverse and effects.

I want to hear from those with similar circumstances to understand what they are doing to fight cancer.

I have a lovely wife and handsome son who I want to live for.

Ken


48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer
#148264 - 04/14/12 01:24 PM Re: Newbie [Re: KenEggman]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Hi there and welcome. - sorry you have to join our group! Try not to freak out too badly. I'm assuming they know it's cancer via biopsy of the tonsil they removed?the PET will tell them if there are lymph nodes involved. If there aren't then that's a good thing. lowers the staging and means you caught it fairly early. But if there are the number can make a difference... Regardless it is what it is - knowing exactly will put you n a better position to fight it.

From what you say it sounds to me that it's HPV related. Most tonsil cancer is. This is a good thing - as HPV related cancer responds well to chemo and radiation. I'm sure smoking and drinking could have an impact but you quit the smoking a long time ago... Regardless those two things would and can irritate the situation now, even if it's HPV related - so try to stay away from the drinking.

There are others here who've been through this and they are well versed in tonsil / HPV related cancers. They'll definitely be along. Post surgery. The next step is likely radiation and chemo, NOT fun, but doable...

So want to give yourself the best chance? Get yourself to a CCC where they deal with this all the time, (they have a protocol in place for these kind of cancers and a team that works together, plus they have a tumor board that is there in case anything unusual pops up. And they have clinical trials) Secondly nutrition, eat healthfully - lots of fresh fruits, veggies, lots of protein... And not necessarily from animal flesh, or dairy. (I'm a veg head... Have a super power protein shake every morning and I'm one year post treatment... Protein helps you heal - nutrition gives your body the best shot at fighting and healing... ) Plus if your going to go for rads and chemo, you need to bulk up starting now. I know people will say eat all your favorite foods - etc.. And do but verything in moderation.. Eat a lot of calories 2500-3000 or more - but try to make it healthy calories too. And educate yourself on this disease... Knowledge is power. Know what treatment to expect - so you can ask your dr. informed questions.

A couple of things - if they tell you they got it all and you're fine - keep a very close eye on your neck and mouth what sometimes happens is they'll remove the original tumor and then send you home but a few stray cells that may be hiding in your nodes could eventually pick up steam and grow - swollen lymph nodes is good indicator. If this happens then high tail it back ASAP (nodes respond to inflammation etc... But I believe in the better safe than sorry adage.) Secondly
Try not to despair... We're here to help, and everyone here has their own story... You may share some similarities with all of us, but never be exactly like someone else. Some stuff here is scary - but it can prepare you, and just because someone with the same cancer is having a super hard time doesn't mean you will. Hugs and good luck!


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
#148273 - 04/14/12 07:01 PM Re: Newbie [Re: Cheryld]  
Joined: Jun 2007
Posts: 9,648
ChristineB Online content
Administrator, Director of Patient Support Services
ChristineB  Online Content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,648
PA
Welcome to OCF! Im impressed by you adding a signature already, thanks! It helps us to get to know you and your situation and makes it easier to answer questions.

OCF is a great place to come for info and support. There is tons of important info on the main pages besides here on the forum.

Was the PET done prior to your surgery?

Wishing you all the best with your recovery.

Last edited by ChristineB; 04/14/12 10:25 PM.

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
#148291 - 04/15/12 01:29 AM Re: Newbie [Re: ChristineB]  
Joined: Jul 2009
Posts: 1,369
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,369
Los Angeles
Ken, adding my welcome and sorry you're here.... but it's a wonderful place with the best people in the world. Please keep us informed as you learn more. The HPV plus or minus status (and I'd agree with Cheryl that it sounds likely) will be an important piece of information, for the reasons she cited.

Getting the best medical advice possible and keeping a positive attitude are the best things you can do at this point. And we're all here to back you up.

Courage!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 8 years all clear in 6/17
#148325 - 04/15/12 07:05 PM Re: Newbie [Re: Cheryld]  
Joined: Apr 2012
Posts: 32
KenEggman Offline
Contributing Member (25+ posts)
KenEggman  Offline
Contributing Member (25+ posts)

Joined: Apr 2012
Posts: 32
VA, USA
Originally Posted By: Cheryld
Hi there and welcome. - sorry you have to join our group! Try not to freak out too badly. I'm assuming they know it's cancer via biopsy of the tonsil they removed?the PET will tell them if there are lymph nodes involved. If there aren't then that's a good thing. lowers the staging and means you caught it fairly early. But if there are the number can make a difference... Regardless it is what it is - knowing exactly will put you n a better position to fight it.

From what you say it sounds to me that it's HPV related. Most tonsil cancer is. This is a good thing - as HPV related cancer responds well to chemo and radiation. I'm sure smoking and drinking could have an impact but you quit the smoking a long time ago... Regardless those two things would and can irritate the situation now, even if it's HPV related - so try to stay away from the drinking.

There are others here who've been through this and they are well versed in tonsil / HPV related cancers. They'll definitely be along. Post surgery. The next step is likely radiation and chemo, NOT fun, but doable...

So want to give yourself the best chance? Get yourself to a CCC where they deal with this all the time, (they have a protocol in place for these kind of cancers and a team that works together, plus they have a tumor board that is there in case anything unusual pops up. And they have clinical trials) Secondly nutrition, eat healthfully - lots of fresh fruits, veggies, lots of protein... And not necessarily from animal flesh, or dairy. (I'm a veg head... Have a super power protein shake every morning and I'm one year post treatment... Protein helps you heal - nutrition gives your body the best shot at fighting and healing... ) Plus if your going to go for rads and chemo, you need to bulk up starting now. I know people will say eat all your favorite foods - etc.. And do but verything in moderation.. Eat a lot of calories 2500-3000 or more - but try to make it healthy calories too. And educate yourself on this disease... Knowledge is power. Know what treatment to expect - so you can ask your dr. informed questions.

A couple of things - if they tell you they got it all and you're fine - keep a very close eye on your neck and mouth what sometimes happens is they'll remove the original tumor and then send you home but a few stray cells that may be hiding in your nodes could eventually pick up steam and grow - swollen lymph nodes is good indicator. If this happens then high tail it back ASAP (nodes respond to inflammation etc... But I believe in the better safe than sorry adage.) Secondly
Try not to despair... We're here to help, and everyone here has their own story... You may share some similarities with all of us, but never be exactly like someone else. Some stuff here is scary - but it can prepare you, and just because someone with the same cancer is having a super hard time doesn't mean you will. Hugs and good luck!


Hi Cheryld, thank you for the warm welcome. During surgery conducted before PET, they did a frozen dissection (while I was under the knife or recovering) and the Dr. says it SCC. He did say it had good lines and there were no tails. I don't know what that really means but know it is good.
I am suspicious of the lymph nodes. Since Dr. did not have PET prior to surgery, left them alone. Since they are swollen (and he did a needle biopsy during surgery), I think they are a problem.

I don't think it will be hard for me to give up alcohol. 14 years ago I took a position that tobacco was going to prevent me from seeing my son grow up and to see his grand-kids. Not drinking to live longer is an easy decision.

Eating. Sore throat has made it almost impossible to eat. Started eating yogurt. Now beginning to be a blender master. Everything blended. Starting with fruits and veggies and soup.

Wondering a good source of high protein to add to liquid meals?

I am getting medical care at Walter Reed-Bethesda National Navy Medical Center. The have care manager and integrated teams. I believe it is the best care I can get.

Thanks to all who share their experiences on these pages.

Ken
Ken


48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer
#148346 - 04/16/12 01:37 AM Re: Newbie [Re: KenEggman]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Hi again! If it's HPV related then they'll radiate your neck to clobber the nodes. We're split 50 50 here on neck dissections. For my type of C - non HPV - they generally remove them, and any other tumor. For HPV, they may remove or debulk the tumor - but leave the nodes... If they still hang around post treatment then they sometimes go back in, but HPV does respond well to treatment.

The FNA (needle biopsy) will give you som answers. The clear margins are good.. Tails is new to me I have to look that up.

Proteins - well I'm a veg head - sooooo - I use a combination vegan, or vegetarian protein powder - usually they are a combination, hemp, chia, rice, pea... That gives you all the protein requirements found in a meat protein. One scoop generally has 16-25 gms of protein. So add a scoop a few time a day to whatever you blend (most are berry, vanilla or chocolate - but some are unflavored.) it's smooth so it should go down okay... my morning shake has one scoop of Sunwarrior (chocolate) pea protein, and one scoop of vanilla vegetarian (only because they don't have chocolate) hemp, pea etc... Mix. I get 56 gms of protein, when you include the cottage cheese I toss in. That's my protein for the day.. I do have a little in the evening but if I don't I know I'm not lacking. I personally don't do the whey, or soy proteins, - whey is animal (milk based) and soy is far too manipulated. I pretty much eat what I want but generally stay away from sugars, white flours, and dairy. (cheese is my occasional sin) and ice cream. smile the sugar thing is another reason I don't do whey, or soy powders most have it. The vegetarian news I use have stevia - a natural non glycemic sweetener.

Good luck, treatment is not easy but you will get through it. Have faith.


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
#148351 - 04/16/12 02:00 AM Re: Newbie [Re: KenEggman]  
Joined: Apr 2012
Posts: 2
me.shirl Offline
Member
me.shirl  Offline
Member

Joined: Apr 2012
Posts: 2
Missouri
I too am a newbie as of today. ready notes and formums and trying to getthe hang of thissite. You all are great and this will be very helpful.
I am HPV-16 tonsil, neck diagnosis with a trach and g-tube starting rad & chemo 4/25 at Siteman Cancer Center. Scared, but a fighter. Reading everything I can and want to be a part of thissite. Looking to get involved and learn and wave off depression too

me.shirl

#148355 - 04/16/12 04:30 AM Re: Newbie [Re: me.shirl]  
Joined: Jan 2012
Posts: 42
MikeM Offline
Contributing Member (25+ posts)
MikeM  Offline
Contributing Member (25+ posts)

Joined: Jan 2012
Posts: 42
California
Hi Ken, At four days I hope the pain meds are working well. Still in Hospital? The next week or so is painful but improves quickly afterwards. Once you get the test results and decide on next steps we can compare notes... Grape Popsicles the vanilla pudding got me thru it.


Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
#148550 - 04/20/12 05:20 AM Re: Newbie [Re: MikeM]  
Joined: Apr 2012
Posts: 3
kaitlynpropp Offline
Member
kaitlynpropp  Offline
Member

Joined: Apr 2012
Posts: 3
Arizona
Hi Ken!
I am a 19 year old girl and I was diagnosed with SCC on the tongue back in December of 2011. Luckily I didn't need radiation or chemo, but I did have my lymph nodes removed and part of my tongue. My mom has been encouraging me to change my diet inorder to boost my immune system. She found an amazing book called, Anti cancer, a new way of life (version 2) that has helped me a ton! It gives you not only different diet tips on healthy cancer fighting foods but it also works on your mental being. It is a great book and if you are still looking for something to help you fight your cancer definitely check this book out! Even if it is all gone, it will help you live a healthier life style though!


Female. 19 years old. Non smoker/drinker. HPV negative. Stage 3 Squamous cell on the side of the tongue. Had lymph nodes removed and part of the tongue.
#148555 - 04/20/12 12:29 PM Re: Newbie [Re: kaitlynpropp]  
Joined: Sep 2006
Posts: 8,311
davidcpa Offline
Administrator, Senior Patient Advocate
davidcpa  Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Gulfport, Florida
Kathy,

I am really surprised with your presentation that radiation and chemo were not highly suggested. Non HPV oral cancers, whether or not linked to tobacco, have proven very difficult to treat. Please watch carefully for any changes in your oral cavity and seek immediate competant care if you see something.


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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