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Joined: May 2009
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I am new here and just wanted to share my situation and get some feedback. I was diagnosed with cancer of the tongue 3 months ago. I had a partial glosectomy to remove the tumor which was successful. I did not follow it up with radiation and it spread into my lymph nodes like my doctor thought that it might. It was only 1 lymph node that was infected and you could barely feel it but it showed on the PET scan so he gave me the choice of either radiation or a neck dissection. After visiting the oncologist and him telling me all the side effect of the radiation I decided on the neck dissection. I was thinking I should have had another opinion on the radiation because this oncologist wanted to give me 6-8 weeks everyday doing my left/right side of my neck as well as my tongue saying that the fact that I am healthy and 30 yrs old that I can take it all. I just didnt want to deal with all the side effects of that much radiation years down the road. So this past wed I had a selective neck dissection which they removed 10 lymph nodes including the infected 1 which was 1.8cm however it was burried deep in my tissue and when the pathology came back it showed signs of it starting to spread. Even though it hasnt spread my ENT now wants to do the radiation to kill all the tissue that was surrounding that particular lymph node. Does all this make sense and should I have to have as much radiation as what the last oncologist told me now after I have already had the tumor removed? We have a very good cancer center locally that I am going to check into. I am hoping that I can just radiate the left side of my neck and monitor it closely after that. Please comment if you have had the same situation or know anything. They all keep telling me that I caught it very fast which is good but it sure doesnt seem like it. It has only been 3 days from my neck dissection and the drain tube has already been removed but the swelling is extreme, my throat is very very sore and I have lost feeling in my ear and part of my shoulder which the doctor said was normal. He told me I probably wont regain feeling back in my ear but I will in my should and my lower jaw in time. Has this happened to anyone else? Thanks so much


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
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Jim,

Welcome to OCF...(Unfortunately). But, you found the best place in order to get great advice from those that traveled this rocky road before you. Before I say anything more..yes..."RUN" don't walk to the best Comprehensive Cancer Center in your area.

My cancer could have been caught a lot sooner but it didn't work out that way. When I finally got to the right crew of Doctors they literally save my life. My cancer was growing extremely fast. I had 40% of my tongue removed and 7 weeks of IMRT, no chemo due to the fact my lymph nodes all came back clear--14 of them were removed. Do I have side affects...SURE...But, I am alive and plan on being around for a very long time.

What was the prognosis if I followed suit with my other doctors that were fussing around...Terminal in 6 months...I probably would not have seen my 38th birthday.

This situation is serious business...and sometimes we have to give a little to receive a whole lot in return...

Go to your CCC and be seen by a group of doctors that deal with cancer on a daily basis...it's the smart thing to do.

Others will explain things more thoroughly with more compassion...

Stay strong!


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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Welcome Jim, even though it's a crap deal I'm glad to see someone else around my age on these forums. I agree with Ray, make sure you are getting advice from the absolute best you can, this is your life at stake here, their mistake costs you everything.

I was stage 4 with lymph node involvement and did chemo/radiation and then neck dissection. I didn't have any issues with my shoulders but I did have my facial nerve compromised which paralyzed my face on the right side. The surgeon was hopeful that I'd get function back, after a year (almost) I have been able to "twitch" my jaw muscle as of late...but who knows it may comeback.

Personally if you don't need radiation don't do it man...they don't call it "the gift that keeps on giving" for nothing around here. But don't be afraid of it either, if it's necessary do whatever it takes man.

Anyway, good luck to you, sorry you had to find these forums but I'm glad you're here. You really will get great info


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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Thanks Eric! We were in a toss up between doing the radiation and not doing it! The doctor left it up to me to decide knowing all that comes with the radiation. However since the infected node was burried in some tissue he thinks that it would be foolish not to have that radiated now! I looked into just having radiation and passing on the neck dissection for the simple fact that I didnt want to 1 have the scar and 2 have to deal with the numbness in my shoulder and face. Mostly everyone I talked to said that I should have surgery then follow it up with Radiation because I am young and healthy and can take all the treatment to the max. So I will be def doing the radiation, I just dont know if I am going to allow them to radiate the left side, right side and my tongue all at once since I already had the glossectomy and the neck dissection. I am thinking I am for now going to just go with the left side radiation and keep tabs on it closely to make sure it doesnt pop back up anytime soon. My Wife and her mother both work for the ENT that did my surgery so I have a personal relationship with my surgeon....I guess you can say I am lucky in that aspect of things! I wish you the best with your recovery and hope that you regain feeling as well. I can move my shoulder and mouth it is just very weird feeling and always feels like I need to scratch it but when I do I cant feel anything! Very irritating! Keep in touch Bro!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
Joined: Jan 2009
Posts: 253
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Jim: Just a note here.
I had chemo therapy just before I started chemo/radiation for 7 weeks. The chemo reduced my tumor and canerous surrounding tissue 70%, but I'm still getting radiaton based on the original PET-CT scan. Why? As my doctor explained, all it takes is one remaining cancer cell for it to spread. Think about it!

Also, do some research into the different types of radiation machines. The radiation machines today are very targeted, and a lot of advances have been made to spare healthy tissues. CCC usually have more than one type of machine available to their patients.

Good Luck
Sandyst


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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Hi Jim,

I understand your reservations. I think you really need to follow the advice of your Drs. Do not take matters into your own hands. You only get so many chances to beat this kind of cancer and the first chance is the best chance. From what I've seen on this board if this comes back it can be VERY hard to deal with and it can spread very quickly and agressively. The side effects of radiation and the surgery are intense but they go away for the most part. I still have risidual effects and limitations from both but I just have learned to manage them and its a lot better than wondering "what if" all the time. I know I gave it my best shot.

It sucks having to deal with all of these side effects from the radiation and surgery but keep in mind that these are teh treatments you must do to save your life. i don't mean to frighten you but this isn't a disease with any sort of logic. Its bad cells invading healthy cells and SCC in the head and neck region is a very serious thing. It needs to be dealt with swiftly and efficiently to get the best possible outcome.

Best of luck with your treatments and I'm wishing you a full and speedy recovery. I know its daunting but you can get through it. Its not fun but it is definitely manageable. You are strong and you will get through it.

Last edited by misskate; 05-24-2009 10:13 PM.

Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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Jim,

As I read all your posts I just get the feeling that you may not be taking this cancer seriously. BTW were any of your nodes positive? Stage I (depending upon the last question's answer) doesn't mean your home free. I have seen many Stage I's not make it, as in died so please be prepared to fight this cancer with everything you may need to stop it the first time.

Talking tough is fine but this cancer is not killed by tough talk.


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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David, FYI--Jim did say that one node was positive, buried deep in tissue, and showing signs of spreading beyond its borders. I mention this because your advice is so valuable always, and knowing this will help you to advise him more specifically....and in your own inimitably vigorous way! You're terrific..but you're also experienced, and direct, and with this monster, there is no other way to deal with it.

Jim...I won't comment except to say that in my humble opinion, you need to put your relationship with your ENT aside and get yourself to the cancer center as fast as your legs will carry you for some good advice. You have been left with too much responsibility for making your own decisions about your treatment, and you are not equipped. You need more information, and from a treatment center who deals with this much more often than your ENT does.

One comment about your ear: They said that my ear wouldn't return to normal, but, thankfully, it did, slowly. It was stopped up .....Nerve damage kept the eustachean tube from functioning properly....and gradually that nerve got better. I took Sudafed every four hours, to try to help with the swelling, and it is totally normal now, and the numbness in the ear itself is 95% resolved. It itches occasionally, but it doesn't feel numb any more. I hope that yours improves also, and I wanted to give you some hope about that. Give it time.....My face also mostly returned to normal. I had a droopy lip which has returned to normal, and a numb upper lip which is now normal too.

Give it time.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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Jim, I re-read your posts, and I wish I could come to you and drag you to the place where you could get the answers you need! You need to go to the cancer center, where they will have a team approach. You will meet with a radiation oncologist who will TELL you what he thinks you need, based on their experience, and he will KNOW what sort of machine you will need, and what side effects you can expect.

IMHO, you are wasting valuable time muddying your own waters, without adequate information to use for a proper decision. A positive node, especially one that showed signs of spreading, is an indication for more aggressive treatment. My doctor did not order radiation for me BECAUSE none of my nodes were positive, but if one had been positive, I would definitely have had radiation. That means that the cancer has already begun its spread beyond your mouth, and there is no way to tell whether or not other nodes have been seeded. You had some removed, but not all, by any means, and you already know that it had made demonstrable growth outside the affected node.

I know that I don't know you, but I've been reading on this forum for a long time, and I can tell you that you can't "watch" this stuff to see what it's going to do. You won't see it until it's too late. And that's a terrible way to live.

Please forgive a stranger's strong words, but please listen to the more experienced voices around you and at least go to the cancer center with all your test results and your surgical reports, and let their team give you their advice based on their experience and training as cancer specialists. An ENT can be a wonderful doctor, but his work includes cancer only occasionally. Please don't worry about your relationship with your ENT. Tell him that you feel the need for an opinion from the cancer center, and he will understand. I promise you that. I'm surprised that he didn't suggest it anyway.

Keep us posted.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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Jim --

Sorry for the bluntness here, but I have to concur with the others -- get to a CCC NOW!

Though your tumor may have been small enough to be characterized as Stage I, the spread to a lymph node makes it Stage III at best. When you say that there were "signs of it starting to spread" in pathology, I suspect that the report would refer to extracapsular extension, which increases the risk for distant spread.

Your opportunities to knock this beast out once and for all are not unlimited. I have side effects from radiation and the neck dissection, but I am alive, a full participant in life, and grateful to be able to say that. Don't let some misguided allegiance to your ENT lead you down the wrong path here. You are young, but this disease does not care -- it is just as lethal to you as it is to someone like me 20+ years older than you.

Don't play Russian Roulette with this thing. Get some doctors who know to guide you. After getting all of the options and being fully informed, you can make your own decisions. However, making decisions on less than full information on something this serious is pure folly.




Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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