Tonsil Ca

Welcome
Hello, djbxray - welcome to our group.

Many people here have undergone similar treatment - side effects vary. My primary tumor was lower down - base of tongue, so my side effects are a little different. We do have people here who underwent treatment for tonsil cancer - I'm sure they'll chime in soon with valuable info for you. I'm not familiar with the robotic radical tonsillectomy. My tonsil got taken via the flamethrower method, I think (doc took it "in case").

Will you be having amifostine injections with your radiation? I only ask because it's a medicine that gets mixed reviews from docs, I think, but it seems like on this website, the people who got the shots had better salivary function when all was said and done IN MY OPINION. For me, reduced saliva is the biggest rad side effect I deal with. Most everything else I attribute to my neck dissection (whether rightly or not) and chemo.

Do well in treatment, and keep us posted.

STGIII SCCTonsils and Single Lymphnode HPV+
I was Dx above January 2009, completed Tx June 2009.

I had the tonsils out, and then nine weeks of chemo (Cisplatin, Taxotere, 5FU) in three week cycles, then seven weeks of concurrent weekly Carboplatin and 35 daily injections of Amifostine just before IMRT radition sessions each day.

Taste and salivary function was pretty non-existant for the first few months, slowly coming back to the point that now at around 2 1/2 years out, I have regained pretty much 95% of both back.

As mentioned eveyone is different, responds and reacts differently.

I didn't have the PEG and in my case that wasn't an issue, but around week 3 - 4 through the 3 - 4 week post rads is usually always the worse with rads.

Mainly for me it was Ensure Plus, plenty of water and a few sliced peaches several times a day. The peaches were in light syrup and helped keep the throat muscles working.

As of now I have no lasting effects, took about a year for the blood work to return completely normal again.

My thyroid took a hit, but so far hanging in with no meds...I have tried Synthroid a few times (prescribed). But so far that hasn't worked out I guess because I'm right on the edge of needing it.

Welcome to the club...

Best,
John

sweetblood22 said:

I had SCC stage 4 unknown
I had SCC stage 4 unknown primary. Had my tonsils out when I was little, so it was not there. I had a neck dissection, they removed the tumor, my left submandibular salivary gland and 23 lymph nodes, three were positive. I had 7 teeth pulled before rads. My three wisdom teeth, (4th one was never there, apparently) and then the 4 next to those. There was nothing wrong with them, but I couldn't get my mouth very far open even then, and they told me, that it would get worse after radiation, and they were correct. I now have a lot of dental issues. I have hardly any saliva at all, which stinks. I did have amifostine injections daily before rads, I'd hate to think how bad I'd be if I didn't get those.

I had a peg placed before I started radiation. I sought three opinions, and all three hospitals, and the various teams all recommended I get the peg placed, I did not have weight to lose. I was refusing, at first, but I finally relented. Good thing I did, because it saved my life.

I had 30 rads, no chemo. It was not an easy road for me. My treatment and recovery were pretty rough. I have some other issues that probably contributed to more severe and long lasting side effects.

If you like, here is the link for the HNC Superthread for you to check out. It has a lot of info on getting prepared for radiation, and info on possible side effects, and things that can help with side effects, and many tips to get more prepared for treatment:


HNC  SUPERTHREAD

Good luck.

Similar
Your case and mine share a lot of commonalities. Except mine is Mucoepidermoid Carcinoma. Ended up with a tumor on the base of my tongue. Had that removed by the robot arm and my doc said the same thing because of clear margins. No chemo and will need low dose radiation. I am scheduled this week to meet with my oncologist so I am reading the same answers as you.

Diagnosed Oct 2011 SC left tonsil bed, Mets to left neck nodes
On Oct. 31,2011, I too had robotic removal of the primary site on my left tonsil bed and lymph nodes removed in my left neck. I'm starting week 4 of a 7 week radiation therapy program and I'm having all the acute side effects. So much so that I'm questioning if the treatment is worth the pain. That's emotion talking obviously but it is a great deal harder than I thought it would be.

Good luck and I hope you have an easier time with the acute side effects.

God bless.

Zorba

djbxray said:

TORS
Zorba I agree the TORS surgery was the most painful thing I have had it took me at least 2 weeks to get off the Vicodin had morphine in hospital after surgery. The neck resection was like a pinprick compared to TORS. I am hoping for the best with the RT because I have golf trip to SC planned in March.

Robotic surgery
I've been reading about this lately. Last April my husband had neck dissection, tonsil cancer stage 4 with removal of 28 lymph nodes. He underwent 35 radiation treatments, is just now starting to be able to taste a few things again, has about zip saliva still.
Who can offer info about the robotic surgery, why it is considered better than a surgeon, etc. Curious to explore

djbxray said:

TORS
Zorba I agree the TORS surgery was the most painful thing I have had it took me at least 2 weeks to get off the Vicodin had morphine in hospital after surgery. The neck resection was like a pinprick compared to TORS. I am hoping for the best with the RT because I have golf trip to SC planned in March.

TORS
I believe it would have been worse w/o the TORS. From what I've read about it the recovery time is much shorter than the human hand.

And I too agree that it was the worst pain I've ever experienced. They should have kept me in the hospital for four days. I got sent home with a script for Lortab which did nothing for my pain. At least you had morphine. All I did was sit still for 8 days until I could get some water down. Ended up in the ER dehydrated after the forth day.

My doctor said the pain is worse for tonsils. With my pain being a 10, I question how it could be any worse. I will take his word for it and offer my sympathy for your pain. Luckily I had my tonsils out as a kid.

Also, I understand the TORS isn't in every hospital. We only had one in my city and was told I'd have to go one state over if I couldn't be scheduled. I do feel grateful that I was a candidate for the robotic arm.

Tommy

tommyodavey said:

TORS
I believe it would have been worse w/o the TORS. From what I've read about it the recovery time is much shorter than the human hand.

And I too agree that it was the worst pain I've ever experienced. They should have kept me in the hospital for four days. I got sent home with a script for Lortab which did nothing for my pain. At least you had morphine. All I did was sit still for 8 days until I could get some water down. Ended up in the ER dehydrated after the forth day.

My doctor said the pain is worse for tonsils. With my pain being a 10, I question how it could be any worse. I will take his word for it and offer my sympathy for your pain. Luckily I had my tonsils out as a kid.

Also, I understand the TORS isn't in every hospital. We only had one in my city and was told I'd have to go one state over if I couldn't be scheduled. I do feel grateful that I was a candidate for the robotic arm.

Tommy

My real question is: Quality Of Life post radiation ???
Are the chronnic effects of radiation worth the pain and suffering during the treatments. My doctor tells me that the chances of my disease returning after radiaition treatments is about 10%-15%, verses 45% if you don't have the radiation.

I'm sure many of you would consider me very foolish to even ask this question, but I make my living with food and beverage and I have always considered cooking, entertaining and eating some of the greatest pleasures of life, after all I am Greek.

If your willing to share your thoughts on QOL 1,2 3 or 4 years post radiation I'd love to hear them.

Thanks

Zorba

Zorba said:

My real question is: Quality Of Life post radiation ???
Are the chronnic effects of radiation worth the pain and suffering during the treatments. My doctor tells me that the chances of my disease returning after radiaition treatments is about 10%-15%, verses 45% if you don't have the radiation.

I'm sure many of you would consider me very foolish to even ask this question, but I make my living with food and beverage and I have always considered cooking, entertaining and eating some of the greatest pleasures of life, after all I am Greek.

If your willing to share your thoughts on QOL 1,2 3 or 4 years post radiation I'd love to hear them.

Thanks

Zorba

I'd believe those numbers if it was referring to the first year or if you were Stage1, small tumor, no lymph involvement, HPV+.
Radiation is definitive treatment for HNC. Surgery or chemo or both on their own as far as I've researched offers no cure. I'm surprised your doc even gave you that stat as if it was an option.
It all depends if you will regret the decision if you get a distant metastatis later in a vital organ whereby it is no longer curable... or persevere through rad recovery and be potentially cured.

From what I've read, QOL is different for every survivor, some few remain on their stomach tubes, most eventually develop dental and thyroid issues. However, I think you would be hard pressed to find a survivor at any appreciable time where they did not have radiation although I may be wrong.

I do wish you the best in whatever decision you make.
Roger

Zorba said:

My real question is: Quality Of Life post radiation ???
Are the chronnic effects of radiation worth the pain and suffering during the treatments. My doctor tells me that the chances of my disease returning after radiaition treatments is about 10%-15%, verses 45% if you don't have the radiation.

I'm sure many of you would consider me very foolish to even ask this question, but I make my living with food and beverage and I have always considered cooking, entertaining and eating some of the greatest pleasures of life, after all I am Greek.

If your willing to share your thoughts on QOL 1,2 3 or 4 years post radiation I'd love to hear them.

Thanks

Zorba

Quality of life.
That is such a hard thing to talk about, because it's so subjective from person to person. Some people can handle adversity and pain better than others. There are some people here, that are on a peg tube, and they are happy with their quality of life. I had mine for 18 months, and ate nothing at all for 9 months, and I was completely miserable. So, for the first year, my quality of life, and my pain level seriously sucked. For quite a while, I would have welcomed death. The second year, it sucked slightly less. Then, between the second and third year, things were immeasurably better. Now, there are just brief periods of suckage. I am left with side effects, and have issues, but nothing that makes me want to leave this Earth. No, I cannot eat the same way, but I have learned to adapt. No, I cannot do things I loved to do, but I've accepted that. My side effects are a little more severe due to my unique circumstances of having a genetic blood disorder, as well as having had cancer. I had issues with swallowing, before I even had cancer, and I had a esophageal stretch before I ever got cancer. My dry mouth is probably more severe because not only did I have the radiation, but my salivary gland on the left side was removed during my neck dissection.

The thing is, how would you know whether it would be a worse quality of life for you, without going through it? There are some here, that had a relatively easy treatment, compared to others. Are you willing to take the risk of return being 45%? Idk. I had a worse shot, making it through my treatment, than I did if I did not do treatment. I had to get three opinions. One voted chemo and rads. One voted that it was too risky, do nothing after surgery. (6/10 or maybe it was 7/10, patients like me with FA died during radiation) the third opinion was to radiate, with possible erbitux. I was told the erbitux would add another 10% onto survival rate. (I was told risk of return 40% with surgery alone, 20% with addition of rads, and 10% with chemo). I refused the chemo. I weighed my risk vs. benefits, and decided that only doing rads, was as aggressive as I could gamble given my situation. I saw my brother, back in 1992, face what seemed to be insurmountable odds, when he chose to have a bone marrow transplant. He only had a 30% chance (like me) of making it. But he was already pre leukemic, and would most certainly die, if he did nothing. He went for it, but he lost the fight. These are decisions you have to talk about with family, and decide. My parents, never told my brother what to do, just as they never told me. They just said that they would support the decision. I will tell you, if I had children, especially young children, I would always go out fighting.

Sorry for the ramble, but I don't think that is the type of question I can talk about, without being a bit verbose.