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

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!

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

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!

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

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.

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, 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.

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.

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.

I agree - been there - done this - TWICE. Get the radiation. It will save you life. And get it from a Comprehensive Cancer Center. This is an aggressive cancer and you need to react in the same manner - aggressively. Leave no stone unturned in your quest for a cure.

Donna

Jim,

If you had a positive node then you are a Stage III regardless of how small your Primary was and regardless of if they took out all the nodes they THOUGHT were suspect.

As others have suggested you need to get another opinion and going to a CCC ( http://www.oralcancerfoundation.org/resources/cancer_centers.htm ) is the best place to get the best opinion, in my opinion.

I had all the faith in my ENT, but went to a CCC then another for confirmation. This is an agressive kind of cancer that seems to have no qualms spreading to lungs, spines and kidneys. As with all tretments the choices are always yours,

Its simple really.Do you want to live with a few problems,or die?My husband was a fit healthy young 44 year old.He was diagnosed stage 1 and given a 90% chance of ten year plus survival.He had all the surgery,then rads to both sides of his neck,tongue and floor of his mouth,he wasn't offered chemo because the ENT /oncologist didnt think it was necessary,and three months after treatment he was dead.

You dont play pick and choose with this disease ,that bullet in the chamber may just be loaded.

liz

I see you making decisions based on the wrong criteria, like scars, nerve damage and even the PEG (Pour the food in the tube vs drink the food, barf it up and have to drink it again...) -- IMHO, your judgment is flawed, perhaps just seizing on the things you can easily understand.

Your ENT is just one person; likely a CCC will see more cases like yours in one year than he will in a lifetime of practice.

You are risking everyone standing around your coffin remarking "He looks great without scars"...

OK guys!!!! Just so you all know if you read everyone elses posts other than my idiotic 1st post then we can stop the ripping! lol, I have gone to Moffitt and have decided to go with the radiation treatment full blown on left, tongue and right side regardless of what my ENT says! I was very naive and trying to take the easy road thru this, I have now accepted that there is no easy road and I would rather deal with all the side effect down the road then not! I will be starting radiation in Approx 2 weeks. and most likely (still havent fully decided) concurrent treatments of Cisplatin X 3 or 6 smaller doses! Thanks for all who responded! This thread should be saved and automatically read by any new member that signs on here....lol! Will keep you all informed!

Jim:
I'm very relieved that you decided to do radiation. Although it seems like a barbaric way to treat a disease, it's still you (our) best chance for beating it.

Best of luck. Keep our posted so that we can help you through all of this...

Sandydt

Hi Jim- You are very brave. I know it is NOT easy to accept what you have to deal with. We've all been through this acceptance phase...its tough...We are here for you along your journey.

You have a great attitude!

Kate

Jim, I believe in you buddy, you can beat this thing! Good luck with tx, remember chics dig scars, pain is temporary but glory is everlasting! Conquer this sh!t, keep you chin up and good luck soldier!

Eric

I agree with you though, people on this board can be harsh sometimes (including me) but they all mean well and are all dealing with the nightmare this disease brings. If people sound harsh it's only because they care and are passionate about it. I may disagree with some people on this thread but I know they all mean well and actually care when they post so I don't let it get to me, I just see it as a testament to how much they care.

Jim It is my belief the=at you just had to think things thru. Anyone named Jim just likes to be positive about things. LOL

Jim,

Look at any scar associated with this disease as a "badge of honor". It also makes for great conversation in being able to bore others with explaining your overall "journey". You should never second guess any reputable team of providers for the proper treatment of this disease. That is why they underwent the many years of studying this disease and incurred the untold thousands in student loans! My attitude was one of "take and do what you want to with me as long as we conquer this disease. Just tell me where to go and what time to be there"!

Hang in there and meet it head-on!

Bill D.

Jim --

Ditto what Bill D. said. I had the same approach, and I now derive a perverse pleasure from sharing the history of my treatment with golf buddies . . . then blasting my drive 50 yards past them! :-)

That has been my attitude since day one in 2006 when I thought I had Cancer. Me and BarbT knew which side had the winner. I still tell the Drs, di what you gotta and they just love it.That's why they call me a one of a kind patient. Just like my dentist used to tell me I was one in a million because I even refused novacaine. He just gave my ex an extra load of it. LOL She was terrfified.