Any info on Stage IV base of tongue/lymph nodes and PROTON THERAPY?

Why no neck dissection to remove lymph nodes? I had both radiation types. The IMRT did not affect a lymph node that was cancerous. I had two neck dissections to remove cancerous nodes, then rads to clean up.

Swabby8428,

Welcome to the H&N forum, sorry that you are here,but  I am  glad you are studying your options.  My choice was for surgery first to remove a lymph node and a ulcerated portion of my tongue followed by 35 rads and 7 erbitux and here I am all fixed up and 5+ years down the road.

Get as many opinions as you need, listen carefully to the recommendations and select a plan for success.  IMRT is good, Proton Therapy is good, Da Vinci Robot is good, etc.  Once you select a doctor they will help you decide.      

The scary side effects described on the H&N forum do not happen to everyone.  Some do very well, others have a rough time.  It was hard for me (at first) to get my head around “you are going to lose your taste buds”, but you do.  Eventually they did return with a new idea on flavors.

Good Luck, you will be on the mend around Labor Day.

Matt

No surgery, no Lymph node disection, no port, no feeding tube, 3 lots of Cisplatin chemo day 1, 22 & 43 and 35 IMRT rads (3 left to do now).

Still getting 2400 calories of liquid food a day, 10 lb weight loss over full course of treatment.

This is the standard treatment in Ireland.

My husband also had HPV positive base of tongue (oropharyngeal) cancer that had spread to two lymph nodes on left side of his neck. He had 35 proton radiation treatments and 7 weekly Cisplatin (chemo) last summer at Scripps. They gave him a lower dose of proton radiation on the right side of his neck even though there was no evidence of any lymph nodes having been impacted on that side. Radiation oncologist said that because primary source was somewhat centered at base of tongue it was possible that the disease had spread to right side even though nothing showed up on CT or PET.  He also programmed the proton beam so that the areas around the primary tumor and the lymph nodes were also radiated. BTW the chemo's role was to make the cells more receptive to the radiation.  My husband never got sick from the chemo.

He had no evidence of disease four months post treatment and currently has no evidence of disease 10 months post treatment. He did not have a feeding tube. He did not have surgery. 

His radiation oncologist started him on Gabapentin the first week of treatment and increased the dosage until he was at "full" dosage when the pain would have started during week 3. He continued the Gabapentin until a month or two post treatment and never had a sore throat. After first four weeks of treatment he had difficulties eating due to everything tasting terrible, dry mouth and swallowing was uncomfortable (but not painful). He was able to start eating regular food one month after his final treatment. He had been drinking liquids for two months. He still has some dry mouth but is eating and gaining weight. 

Everyone is different so find out your options and trust your doctors. One of the reasons my husband chose proton was because he is a harmonica player and he wanted to minimize the impact to his salivary glands as much as he could. They still were impacted (except for the one in the front under the chin) but he has been playing harmonica since six months post-treatment. 

good luck to you and your husband!  Feel free to send me a private message if you want additional information about my husband's experience  

Nancy

My husband was also diagnosed with SCC.  He originally wanted to get the proton therapy, but changed his mind once we spoke to the oncologist at a very well known hospital in Maryland.  He was told that the proton therapy is SO PRECISE, that if there is any cancer lingering just beyond the beam, then it may miss it.  My husband had the 35 radiation treatments and 5 chemo sessions.  He had a very rough recovery... lost 85 pounds (he did not have a peg tube). 

He just had his PET scan last week, and it came back that he is currently cancer free!

Although the radiation and chemo kicled his butt... we would go with this method again. 

Good luck to your husband.

I had 35 Proton treatments at Scripps also like Nancy24's husband. I believe the side effects were quite a bit less than with IMRT, I did not have a feeding tube and lost 20lbs by the end of treatment. I'm currently 4 months post treatment and overall doing well except that I have very little saliva. Taste came back quickly but things do taste a bit different. I also started Gaberpentin early and only had a little throat pain, swallowing was not effected at all. I did have a bad reaction to the chemo and only had 4 of the 5 scheduled.

I had BOT tumor only and did not have lympth node involvement. But Nancy is correct, they can control the Proton beam to radiate a wider area if it's necessary. Please research both types and make your own informed decision, but I highly recommend Proton treatment. So far two scopes and no sign of disease!!!

Don