Phase Two

tommyodavey

Next Wednesday I am on board to have a radical/modified neck dissection. My surgeon will also move my left salivary gland to the center of my mouth so I don't lose it during radiation. It will be an overnight because of the 5:30pm time slot. More if needed.

There is a dilemma in my case though. I went and met with my new Radiation Oncologist and he was very amazed with my case file. He told me that even having a Mucoepidermoid Carcinoma tumor on the base of the tongue is so rare that there isn't much info on it. Plus, mine was a low grade tumor and he said it doesn't make sense how I have a cancerous right lymph node. Both the CT and PET state that it is so. A low grade tumor with clear margins normally doesn't spread so my case is a paradox. He also said that if I didn't have the neck tumor, my treatment would be over. No RT.

This is my dilemma. Depending on what the pathology of my lymph node is after my neck dissection on Wednesday, I may or may not need radiation treatment. And to tell the truth, what would happen if it is another low grade tumor and I refuse RT? What's the worst that can happen? Have another tumor come back 10 years from now? I am seriously considering NOT doing the RT unless the tumor is a bad one. I'll make that decision in a few weeks once I find out more.

I am 57 years old and had just retired for three months before diagnosis. Talk about a glitch in the get along! (I know, old phrase)

After my surgery I'll post more. It shouldn't take more than three days for the pathology report on my tumor to come back and then I can think about what to do.

Thanks All for your support,

Tommy

Pam M

Hoping All Goes Well
Wow - just overnight for a neck dissection. Perhaps my stay was longer because I had radiation to the area before the dissection (and I had swallowing issues after the procedure - nothing to worry about - my issues were totally unexpected). I couldn't begin to advise you on how I'd proceed in your shoes. Sounds like you've got some thinking to do in the next few days. Hope the surgery is boring, and recovery swift.

D Lewis

Quite the dilemma.
Tommy

Holding good thoughts for the best possible outcome for you. I haven't heard of anything like this before now. I hope you plan to get a second opinion from another major medical center or cancer research center near you before you make a final decision.

Best wishes in your quest for cure.

Deb

jeepman

D Lewis said:

Quite the dilemma.
Tommy

Holding good thoughts for the best possible outcome for you. I haven't heard of anything like this before now. I hope you plan to get a second opinion from another major medical center or cancer research center near you before you make a final decision.

Best wishes in your quest for cure.

Deb

Concur with Deb
Just my opinion, but I have been through treatment which included BOT excission, tonsillectomy, neck dissection and oh yeah....8 Cisplatin/taxol infusions and 39 Rads. I have met lots of really good people on this site and have never heard of anything like yours for a treatment plan.
I would absolutely get a second opinion prior to a final outcome.

Mike

sweetblood22

Tommy
I guess I am surprised, I was in the hospital 4-5 days after my neck dissection. My doc wanted me in, until my drain came out.

tommyodavey

sweetblood22 said:

Tommy
I guess I am surprised, I was in the hospital 4-5 days after my neck dissection. My doc wanted me in, until my drain came out.

Overnight
Actually, I was not told exactly how many days I'll spend in the hospital. The office just said to expect to stay overnight so they may keep me longer.

Yea, I have a weird case. Both my surgeon and oncologist say RT is recommended but I won't have to make a decision until we find out more.

Thanks everyone for your support. If it's days before you here from me then you know they kept me in the hospital. No matter, I'm an avid book reader with stacks on hand and a Kindle waiting so I won't be too bored if I stay. Just hoping for cute nurses!

Tommy

longtermsurvivor

tommyodavey said:

Overnight
Actually, I was not told exactly how many days I'll spend in the hospital. The office just said to expect to stay overnight so they may keep me longer.

Yea, I have a weird case. Both my surgeon and oncologist say RT is recommended but I won't have to make a decision until we find out more.

Thanks everyone for your support. If it's days before you here from me then you know they kept me in the hospital. No matter, I'm an avid book reader with stacks on hand and a Kindle waiting so I won't be too bored if I stay. Just hoping for cute nurses!

Tommy

Ha
If you're like me I always take a stack of books to the hospital with me, having every intention of reading all of them. Then they drug me up and I read the same sentence over and over again for a week:)

sweetblood22

longtermsurvivor said:

Ha
If you're like me I always take a stack of books to the hospital with me, having every intention of reading all of them. Then they drug me up and I read the same sentence over and over again for a week:)

Yeah, I used to be a voracious reader. When I got cancer, I bought a bunch of books and people gave me a bunch of books, and I never read them! First, my eyes were all weird and blurry during radiation. I couldn't hardly see! I had to zoom the computer screen way large, and type in all caps. Then when I finally could see better, I read one sentence and fall asleep. Now, I have gotten out of the habit. So many good books I have, I need to get back in the habit, but first, I need new glasses. My eyes have seriously changed since then and now I think I need bifocals.

Ingrid K

sweetblood22 said:

Yeah, I used to be a voracious reader. When I got cancer, I bought a bunch of books and people gave me a bunch of books, and I never read them! First, my eyes were all weird and blurry during radiation. I couldn't hardly see! I had to zoom the computer screen way large, and type in all caps. Then when I finally could see better, I read one sentence and fall asleep. Now, I have gotten out of the habit. So many good books I have, I need to get back in the habit, but first, I need new glasses. My eyes have seriously changed since then and now I think I need bifocals.

good luck
tommy, good luck with your surgery... glad you have some books, as I was in the hospital for 7 days after my neck dissection. In any event, wishing you the best possible outcome, prayers sent your way.

Pam M

sweetblood22 said:

Yeah, I used to be a voracious reader. When I got cancer, I bought a bunch of books and people gave me a bunch of books, and I never read them! First, my eyes were all weird and blurry during radiation. I couldn't hardly see! I had to zoom the computer screen way large, and type in all caps. Then when I finally could see better, I read one sentence and fall asleep. Now, I have gotten out of the habit. So many good books I have, I need to get back in the habit, but first, I need new glasses. My eyes have seriously changed since then and now I think I need bifocals.

Spectacles
Got my bifocals last month - sigh. I, too, used to be an avid reader.

braziliangirl82

Hope u get well soon
I had a partial neck dissection on dec 21. Still recovering... stayed with the drain for 5 days and all my limphonodes become clear. I really hope that your case is the same and u won´t need radiation!

tommyodavey

braziliangirl82 said:

Hope u get well soon
I had a partial neck dissection on dec 21. Still recovering... stayed with the drain for 5 days and all my limphonodes become clear. I really hope that your case is the same and u won´t need radiation!

Phase 2 completed
Got home last night (Friday) from my Wednesdays radical neck dissection. The pain isn't too bad but I'm pretty swollen up and sore.

My Dr. took out the positive lymph node on the right side and also 50-60 surrounding ones just to be sure. That explains the swelling. He also moved my left parotid (salivary gland) from my left side to the center so it won't get fried during radiation. Because of that, my incision runs from below my right ear, down under my throat, and up my left side maybe 4 inches below my ear. A big happy smiling scar.

Lost sensation on my right side but he said he doesn't think he cut the nerve, just stretched it out a lot. It could take as long as 9 months to return to normal and a small chance it won't. Not a bad trade for getting the cancer out. I can talk okay but my smile looks demented.

When phase 3 low dose radiation will occur I don't know. Those of you who have had this probably know the answer. I know I was in conflict on whether to radiate or not. After a lot of thought, my answer is yes mainly because it did metastasize to my neck and I don't want it to return somewhere worse like my lung. I was told there is a 25% chance of it returning if I don't. That's a no brainer to me.

Just glad to be home in my own environment.

Tommy

Hal61

tommyodavey said:

Phase 2 completed
Got home last night (Friday) from my Wednesdays radical neck dissection. The pain isn't too bad but I'm pretty swollen up and sore.

My Dr. took out the positive lymph node on the right side and also 50-60 surrounding ones just to be sure. That explains the swelling. He also moved my left parotid (salivary gland) from my left side to the center so it won't get fried during radiation. Because of that, my incision runs from below my right ear, down under my throat, and up my left side maybe 4 inches below my ear. A big happy smiling scar.

Lost sensation on my right side but he said he doesn't think he cut the nerve, just stretched it out a lot. It could take as long as 9 months to return to normal and a small chance it won't. Not a bad trade for getting the cancer out. I can talk okay but my smile looks demented.

When phase 3 low dose radiation will occur I don't know. Those of you who have had this probably know the answer. I know I was in conflict on whether to radiate or not. After a lot of thought, my answer is yes mainly because it did metastasize to my neck and I don't want it to return somewhere worse like my lung. I was told there is a 25% chance of it returning if I don't. That's a no brainer to me.

Just glad to be home in my own environment.

Tommy

Home
Hi Tommy,
I'm glad to hear you're home and the dissection is finished. When I had my dissection I told friends I would need to get an apartment with a 2nd bedroom, so there would be one for me and one for my neck. I still have numbness on the left side of my jaw and neck after about a year post, but I take a "nerve blocker" called Gabepentin that has zero side effects and I simply don't feel the numbness. That's worse case, like your doc said, very good chance that all feeling will return for you.

I'm with you on the low dose ray treatment. 25% possibility is easy to translate. A year or two from now the extra treatment won't amount to much.

best, Hal

longtermsurvivor

tommyodavey said:

Phase 2 completed
Got home last night (Friday) from my Wednesdays radical neck dissection. The pain isn't too bad but I'm pretty swollen up and sore.

My Dr. took out the positive lymph node on the right side and also 50-60 surrounding ones just to be sure. That explains the swelling. He also moved my left parotid (salivary gland) from my left side to the center so it won't get fried during radiation. Because of that, my incision runs from below my right ear, down under my throat, and up my left side maybe 4 inches below my ear. A big happy smiling scar.

Lost sensation on my right side but he said he doesn't think he cut the nerve, just stretched it out a lot. It could take as long as 9 months to return to normal and a small chance it won't. Not a bad trade for getting the cancer out. I can talk okay but my smile looks demented.

When phase 3 low dose radiation will occur I don't know. Those of you who have had this probably know the answer. I know I was in conflict on whether to radiate or not. After a lot of thought, my answer is yes mainly because it did metastasize to my neck and I don't want it to return somewhere worse like my lung. I was told there is a 25% chance of it returning if I don't. That's a no brainer to me.

Just glad to be home in my own environment.

Tommy

Rads can start
as soon as 2 weeks post op. When I had my radical neck, it bothered me a bunch that so much time was passing between my original diagnosis and definitive treatment for the cancer that i couldn't wait to get started.

Roger on the getting home!

sweetblood22

Tommy
Glad you are home and doing ok.

tommyodavey

sweetblood22 said:

Tommy
Glad you are home and doing ok.

Nice Support
Thanks all for your encouraging words and support. I am ready to finish this off and be done with it so I can start my real recovery. At least there isn't anymore surgery to remove body parts.

As that famous quote goes from The Cable Guy: "Let's git 'er done". Couldn't agree more.

Tommy

braziliangirl82

tommyodavey said:

Phase 2 completed
Got home last night (Friday) from my Wednesdays radical neck dissection. The pain isn't too bad but I'm pretty swollen up and sore.

My Dr. took out the positive lymph node on the right side and also 50-60 surrounding ones just to be sure. That explains the swelling. He also moved my left parotid (salivary gland) from my left side to the center so it won't get fried during radiation. Because of that, my incision runs from below my right ear, down under my throat, and up my left side maybe 4 inches below my ear. A big happy smiling scar.

Lost sensation on my right side but he said he doesn't think he cut the nerve, just stretched it out a lot. It could take as long as 9 months to return to normal and a small chance it won't. Not a bad trade for getting the cancer out. I can talk okay but my smile looks demented.

When phase 3 low dose radiation will occur I don't know. Those of you who have had this probably know the answer. I know I was in conflict on whether to radiate or not. After a lot of thought, my answer is yes mainly because it did metastasize to my neck and I don't want it to return somewhere worse like my lung. I was told there is a 25% chance of it returning if I don't. That's a no brainer to me.

Just glad to be home in my own environment.

Tommy

Smile
My smile is strange too. It improved a bit, but not as before.
The doc said it will take long to come back, from 6 months to one year.
Trying to be patient, my surgery was dec 21 / 2011.