Hubby with tonsil cancer with lymph node involvement

Welcome.  the waiting is hard, but you will start before you know it.  I had left tonsil and 2 left nodes...T2 N2.  The chemo is hard, the radiation is terribly hard and then it gets better.  I have been NED for 13 months and am doing great.  I went back to work 6 weeks after my last radiation.    It will get better!

Jeanne1278 said:

Husband with tonsilar cancer with Lymph node involved

My best friend and husband was just diagnosed with tonsilar cancer and wefound out yesterday it has spread to right lymph node. We were so sure it was just something stuck in his throat. This has been such a blow. Seems oUr whole world is about to change. I am glad I found this blog as I too went online and scared myself to death and naturally didn't share this info with him. We have been given a choice of dissection ofneck to remove tonsils and lymph node plus radiation, or radiation and chemo. I read a lot about the stronger radiation destroying taste buds and salivery glands, so we are leaning toward surgery. Any support would be greatly appreciated from those of you who are going thru this now or who have come out the other end.  

I had very similar, both symptoms and Dx..., but no dissesction.

I wouldn't base your decision onloss of taste and saliva..., it most cases that is inly temporary... It does take awhile to get back, but killing the cancer is the main thing.

As for a stronger radiation...., sorry to bust your bubble..., radiation is radiation. It's going to hit taste and saliva...

Myself personally and becasue that is what I went through, I'd opt for the tonsils comig out and chemo and rads..., dissection as a last choice if the other two didn't dissolve away the tumor.

Either way, go for what they suggest of having the best chances of a one time cure...

Best,

John

Jeanne1278 said:

I may be confused

John, thanks for your comments, I do think I may be confused as to what "neck dissection" means. Dr said lymph node surgery would involve opening from bottom of ear downward toward collar bone. I took that to mean neck dissection. If I am wrong could you explain what neck dissection is?

How long were your taste buds and saliva glands affected? Did you have a feeding tube and for how long. I am so scared forhim right now. 

Man, I need to quit drinking so much before replying..., LOL..., just kidding... I get in a hurry and forget to check my spelling apparently...No, I think you have the dissection about right...

By completely affected, two years..., as for severly affected, a few months.... By six months post rads, I could definitely eat, drink and taste enough to survive if it never got any better..

It probably took a good year for a large majority to be somewhat recovered...some things lagged for nearly two years though.

No feeding tube....

Don't be scared, he's going to make it through... Deal with the complications as they present themselves..., and be pro-active on the ones you  can.

Best ~ John

I go in next Tuesday for a full body Scan and more test, As of right now they are saying squamacel cell carsanoma/(SPELLING) on right tonsil.  Reading some on internet but keeping in mind most is old or blown out of proportion. This forum so Far has been awesome and I have only read a few threads. 

It's scary and i'm keeping positive, just way too many questions...

Will reply and get on here more.

Tony in Oklahoma.... advice welcome..    k7iss@k7iss.info just mention from CSN cancer survivor network.

robswife87 said:

Welcome to the newcomers

Sorry you had to come join us. 

We just finished treatment last Friday. Rob is going through the worst now that it is over. 

He had no surgery. They said last resort if chemo and rads did not work. Do as others have said, come here only the rest of the internet will scare you to death.

I did nothing but cry for 2 weeks after the diagnosis. Rob got me out of the funk by saying he was here today, will be here tomorrow and has no plans on leaving me anytime soon. 

I got on the horse with him at that moment and we plan to be survivors of this BS disease. He wants to apologize constantly for putting me though this and I have to tell him he didn't ask for this or will this to happen. It is just another bump in the road that will soon be gone and we will be on a smooth path again.

You will soon find yourself to busy to worry about anything. This time will go fast and soon you will be cancer free.

Sandy

Only research is more the medical, what each part plays in the body, always new lymph nodes helped clean body but no clue past that.  I'm just playing a waiting game until tues to see first oncologist and full body scan.. that's the scary thing of waiting.

I have a huge family and friends for support.

Tony

Tony.K7ISS said:

Just found out, this week from biopsy.

I go in next Tuesday for a full body Scan and more test, As of right now they are saying squamacel cell carsanoma/(SPELLING) on right tonsil.  Reading some on internet but keeping in mind most is old or blown out of proportion. This forum so Far has been awesome and I have only read a few threads. 

It's scary and i'm keeping positive, just way too many questions...

 

Will reply and get on here more.

Tony in Oklahoma.... advice welcome..    k7iss@k7iss.info just mention from CSN cancer survivor network.

Hi Tony -

I am in Oklahoma also.  I am now 7 weeks out of treatment and feeling quite good.  I have sent you an email to the address above with more information.  (I don't post here very often, as I have a bit of personal guilt since my treatment seemed so much easier than others have had it - 35 rads over 7 weeks plus 3 Cisplatin every three weeks - but read posts daily.  They have really helped me  along this journey)

Becly

patmac11 said:

We've just joined this lousy club too.... just starting out

I hate to say it but we've just joined this club too. We are at the beginning and I am on the internet just trying to find out alittle and get famliar with terms and stage some questions.  Memorial Day weekend we noticed the enlarged lymphnode.  Went to primary for check up on diabetes/heart stent issues he confirmed "ya that looks too big".  Sent hubby for ultra sound, then CAT.  Next see the ENT.  He set us up for needle biopsy. Diagonsis:  scc  hpv positive.  Now we look for primary.  Lymphnode tumor about 2.5 cm.

Now we set up for triple endo to find primary but they abort due to a funky stress test and of course has been on blood thinners for a year.  Now we finally get a PET and as the ENT suspected, found it in right tonsil. 

Now, this week coming up have appt with both the radiation oncologist and the medical oncologist.  Have not idea what to expect, they are talking radiation with some chemo.

He is only 52 and was in good health, we thought, until last year when on his birthday he got a heart stent in the LAD, and I mean ON HIS BIRTHDAY!  He had a widow maker blockage and then was discoverd to be Type II diabetic.  Just when we have all this under control and are rolling along..... here we are!

Staying positive, ENT said we would certainly be planning our vacation five years from now...... Any suggestions?  We have acess to some of the best, Dana Farber, Mass General...

Pat

 

well, you're right....this isn't a club anybody wants to join...but since it appears you have no choice, I can tell you that you've managed to find the best forum on the internet to get questions answered....to find people who have been through or are going through treatment, and can help your hubby get through this the best he can.

You might want to start a new thread here....so you get all the answers you seek....this is an older thread, and sometimes folks miss or skip them because they are older.

Your hubby is going to get through this.....it just takes some time to do so. 

p

patmac11 said:

We've just joined this lousy club too.... just starting out

I hate to say it but we've just joined this club too. We are at the beginning and I am on the internet just trying to find out alittle and get famliar with terms and stage some questions.  Memorial Day weekend we noticed the enlarged lymphnode.  Went to primary for check up on diabetes/heart stent issues he confirmed "ya that looks too big".  Sent hubby for ultra sound, then CAT.  Next see the ENT.  He set us up for needle biopsy. Diagonsis:  scc  hpv positive.  Now we look for primary.  Lymphnode tumor about 2.5 cm.

Now we set up for triple endo to find primary but they abort due to a funky stress test and of course has been on blood thinners for a year.  Now we finally get a PET and as the ENT suspected, found it in right tonsil. 

Now, this week coming up have appt with both the radiation oncologist and the medical oncologist.  Have not idea what to expect, they are talking radiation with some chemo.

He is only 52 and was in good health, we thought, until last year when on his birthday he got a heart stent in the LAD, and I mean ON HIS BIRTHDAY!  He had a widow maker blockage and then was discoverd to be Type II diabetic.  Just when we have all this under control and are rolling along..... here we are!

Staying positive, ENT said we would certainly be planning our vacation five years from now...... Any suggestions?  We have acess to some of the best, Dana Farber, Mass General...

Pat

 

I went through STGIII Tonsil Cancer (right side), with a lymphnode as a secondary...HPV+.

Sixteen weeks of four types of chemo, 35 days of radiation, after having the tonsils taken out...

As mentioned, it's a rough club to belong to, but very doable, and very survivorable. Many here have went through what you are about, and came out the other end with minimal long term side effects..., other than maybe a bit abi-normal.

I went through mine, January - June 2009..., all scans have been good since.

Check out the SuperThread, and keep the Googling to a minimum, or at least realize that there is a ton of old info out there, most not taking consideration to HPV derived cancer.

Best,

John