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#169485 08-18-2013 07:48 AM
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Was Dx with SCC T2 NO 05/20/2013.
Tumor,2.5cm, Depth,8mm.
Surgery: 07/03/2013
Partial Glossectomy, and radical neck dissection.
Pathology: Clear margins, no CA in lymph glands.
Post Op:
Radiation Therapy to start 09/03/2013


SCC T1NOMO May 2013 Age,61
SCC T2NOMO 06/2013
Partial glossectomy 07/03/2013
Radical Neck Dissection
Radiation starts Sept.3,2013
Denise KC
Joined: Aug 2013
Posts: 12
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Denise KC


SCC T1NOMO May 2013 Age,61
SCC T2NOMO 06/2013
Partial glossectomy 07/03/2013
Radical Neck Dissection
Radiation starts Sept.3,2013
Denise KC
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Hi welcome Denise.... Are you still in treatment are have you finished?


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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Hi Chery Thank You. I am just beginning radiation on the 3rd of September. I had a real struggle with treatment options. I had the surgery 07/03 and still have some side effects from that but not real severe. I was ready to give up before I even began!
I am a manic depressant on medication but even with that the whole aspect of this is so scary and most of the outcomes are not very good. You have to wonder if going through all these treatments and surgery's are really worth it...I'm sorry, I am venting. No one seems to understand but the patients and survivors of this horrible cancer. The radiation oncologist told me I had to have the radiation or the cancer would be back in a year or two. After reading some of the posts, it looks like most cancer returns even with radiation within a year or two. Tell me more of side effects that you have had to go through.


SCC T1NOMO May 2013 Age,61
SCC T2NOMO 06/2013
Partial glossectomy 07/03/2013
Radical Neck Dissection
Radiation starts Sept.3,2013
Denise KC
Joined: Sep 2006
Posts: 8,311
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Whatever anyone tells you about their Tx please remember that everyone can react differently.

So no chemo is planned?

Most likely with radiation:

You will loose most of your taste early on;

Your taste wioll mostly come back but may take all of 2 years post Tx;

You will develop swallowing difficulties and must depend upon a liquid diet for your calories;

You will secret a thick mucous towards the end of Tx that can last a few weeks but will stop;

You will develop dry mouth as your saliva glands suffer from the radiation damage;

Your dry mouth will improve but, like your taste issues, may take all of 2 years to recovery to their new level;

The few weeks POST Tx are usually the worst time we all have so just be prepared;

Your recovery can take all of 2 years with the first few months being the most challenging and the first year worst than the 2nd year.

That said there are a few things I would recommend:

Get with your dentist and make sure they know you are about to undergo radiation;

Get your TSH tested pre radiation and record that number in case your thyroid craps out post Tx;

Do start eating and eating and eating everything in sight especially your favorite foods;

Do try and consume 2500 cals and 48 oz of water each and every day starting NOW;

Do write down any question you think of and ask your docs and us;

Do keep a positive attitude as you will be able to finish this Tx and you will walk out of that tunnel and you will recover from this Tx.



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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"OCF Canuck"
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Most of what David has said is correct. We all experience certain things but it is varying in degrees depending on you. If you have a high pain tolerance then it isn't as bad, but you still need to push yourself. Personally I relied on minimal pain meds... Only for a little over a week during the end of my treatment - I'm not typical - so plan for the worst hope for the best and make sure you have pain meds on hand. I know its daunting but you can an will get through it. Hopefully you have some support or care giver - it's not easy to go through alone. Try not to see the down side. I know reading here is scary it seems like there are a lot of recurrences, but truthfully we have just as many people who stay on through treatment and then move on. We have some regulars who stick around for support and of course we have recurrences it just seems like a lot because this is a forum for active cancers and cancer info. smile hugs. It's a doable thing. - not fun but doable. 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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Hi Denise,

You've gotten some good advice above from David. I'll add another tip. Start now preparing your neck for radiation by applying a cream like "Special Care Cream" several times a day. Never use it prior to a rad treatment but apply liberally afterwards. You most likely will still deal with some sunburn like symptoms but they will be less if you start now.

As treatment progresses, you'll probably develop sores in your mouth and on your tongue. A solution made up of 16oz water, a tablespoon of baking soda, a tablespoon of salt and 5g of glutamine will help with the discomfort and pain. Use it several times a day. Ask your docs to prescribe "Magic Mouthwash". There are various recipes. You want one with lidocane to help numb your mouth when the sores get bad and your throat gets too sore to swallow. It will give you a short window (15 minutes or so) to get some nourishment down. Just make sure to take any pills prior and it numbs your tongue too!

Best wishes, positive thoughts and prayers

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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Thank You so much David for being positive and for the encouragement. Where you a stage 1 then it re-occurred at a stage 4?


SCC T1NOMO May 2013 Age,61
SCC T2NOMO 06/2013
Partial glossectomy 07/03/2013
Radical Neck Dissection
Radiation starts Sept.3,2013
Denise KC
Joined: Aug 2013
Posts: 12
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Joined: Aug 2013
Posts: 12
Thank You so much. All these tips will help me I'm sure. This is a wonderful site. Thanks again


SCC T1NOMO May 2013 Age,61
SCC T2NOMO 06/2013
Partial glossectomy 07/03/2013
Radical Neck Dissection
Radiation starts Sept.3,2013
Denise KC
Joined: Aug 2013
Posts: 12
Member
OP Offline
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Joined: Aug 2013
Posts: 12
Appreciate your kindness and support. Wonderful site.
Thank You


SCC T1NOMO May 2013 Age,61
SCC T2NOMO 06/2013
Partial glossectomy 07/03/2013
Radical Neck Dissection
Radiation starts Sept.3,2013
Denise KC
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