Tonsil Cancer - Had TORS and Neck Dissection and current status on radiation

stickmanfob

T2 N1 M0 - surgery performed on July 18th and radiation started 8 weeks after surgery. Plan is to do the traditional 30 radiation days. On day 18 of radiation and it is tolerable. No chemo since surgery was performed. 12 more radiation treatments to go. It does suck but feel like all of this is worth it since the percentage of this coming back is low. I think the problem with this discussion board is that there are so many people cured of this cancer on this board but you don’t hear all the good stories since they are done with their treatment and fully cured and they don’t post here anymore.

wbcgaruss

stickman, congrats on only 12 more radiations to go.

It is difficult but it is absolutely worth it as a follow-up to surgery to clean up cancer cells at the microscopic level with the prescribed radiation treatments.

I would say the problem you mention on this discussion board is a good problem, that there are so many people cured and they don't hang around and tell their stories. They are back to enjoying life and counting their new found Blessings being cancer-free and cherishing each day they have been given. Praise God that so many are cured.

This is true, you mostly have to be on the board when they are going through treatment and discussing it and asking and answering questions. I think the majority of people don't want to come back here and relate stories and visit because it is a reminder of one of or possibly the most difficult times of their life. It causes anguish and is upsetting to them.

If you want to read good stories of treatment and the foibles that go with it you can search the site for whatever aspect of treatment situations interest you and find treatment stories that way or find a posting and click on the person's profile and read their story if they posted one.

Wishing You The Best

Take Care, God Bless

Russ

scoleh

https://csn.cancer.org/discussion/327143/tonsil-cancer-had-tors-and-neck-dissection-and-current-status-on-radiation

Hi there. After posting my reply to your reply, I came across this thread and see that you are receiving the full radiation load. Best of luck to you as you complete those treatments. Are you eating and able to swallow? I'm told the effects of radiation are cumulative which may be a reason to use a G tube for feeding. Are you using?

stickmanfob

No feeding tube. Usually not the case for those who have surgery without radiation. Still eating and swallowing. It is cumulative but don’t know many who have done surgery that require having a feeding tube without chemo.

stickmanfob

Five left and still feeling ok. Sores in my mouth and just tired but knowing that this is going to help ensure that this thing won’t come back is keeping me going. I think staying positive is a huge plus while going through this.

wbcgaruss

Agreed, stickman, staying positive is huge as hard as it is sometimes, yes sometimes extremely hard when we are deep in treatment and feeling terrible. But the trick is to look ahead, get through each day, and keep our eye on the prize, completing all our treatments and being cancer-free.

If the sores in your mouth are bothering you a lot see your care team and get them checked out. You could try the salt and baking soda rinse also and see if that helps, it may make your mouth feel better and refresh it. Feeling tired is an effect also that goes with this I remember I got to a point where if I sat down I would soon fall asleep so if I wanted to get anything done I made sure it was done before I sat down.

Five left means you should be finished Tuesday, wonderful hang in there.

Wishing You the Best

Take care, God Bless

Russ

PKDTV

https://csn.cancer.org/discussion/327143/tonsil-cancer-had-tors-and-neck-dissection-and-current-status-on-radiation

In fact you are a little bit right. I had to admit, that I didn't post a lot since my treatment was completed. I informed under my first post here about being cured but I didn't post a lot since then. Anyway, I am more then a year now since completing the treatment and all is fine with me. I feel great, I am back to normal life completely now. I had three checks post-treatment and all were clear. Last one was from just 4 weeks ago 02/10/23. In fact I got one side effect which is always confirmed during my checks - it is narrowing of the esophagus. I need to be careful while eating, need bite food properly otherwise all can stuck in my throat. If you are aware how to eat, how to bite the food this is a minor side effect especially at the price of being healthy.

My cancer was HPV+ and as far as I remember (I have no medical documentation with me now) it was T2/3 N2 M0. I had two chemo Cisplatin and 33 radiations - 70Gy in total, no surgery. Treatment took almost 7 weeks.

wbcgaruss

PKDTV, I think the trick is to chew the food a lot smaller now to be sure it is a size that will go through. I had the same issue and got a piece of Turkey stuck and it wouldn't go down and no matter what I did I couldn't get it to come out.

You may be a good candidate for Dilations, I had 4 of them after that, spaced out over a period of time and it helped quite a bit.

You would want to see a A gastroenterologist for that and they can determine if it would help you.

It is a pretty common procedure.

Take Care, God Bless

Russ

PKDTV

Thank you Russ, I will get in touch with doctor and check if he do anything about it. I though that it will be coming back to normal as the time passes, but since few month I did not see any improvement. I try to chew the food smaller then in the past and drink more water while eating and it is helpful but still need to be very careful.

stickmanfob

So another update….finished my radiation four days ago. I did six weeks, bilateral (right side), at 60gy. So a recap of my six weeks. Listening to many others it seems people who do surgery and the neck dissection then the radiation usually have an easier go of it then the people who do chemo and radiation. By easier, I mean to say it seems less common for someone with my procedures to have a feeding tube. Not to say it doesn’t happen but it seems the majority that I have spoken to do not.

I’m not sure if that it’s the preparation that helped me out but this is what I did before radiation. I had eight weeks between surgery and radiation. I forced myself to eat whatever I could eat. I ate anything and everything and thinking of food as medicine. I gained 20 lbs. My goal was to lose as little of that 20 lbs during radiation as possible. I also religiously did the baking soda and water everyday and five times a day.

These are the things that I did everyday beginning the first day of radiation. Salt and baking soda rinses five times a day, manuka honey morning, noon and night , ice packs on my radiation neck and face three times a day, excessive amounts of radiation lotion all throughout the day on my neck and face, neck stretching exercises and swallowing exercises at least three times a day.

The first two weeks were not so bad for me. Remember the radiation you are receiving is cumulative so I was doing six weeks, which equates to 2gy per day.

Week 3 is when the sores started for me and continues to today. This effected my eating since the sores were on my tongue and where my tonsils used to be. Magic Mouthwash is your friend. I could not have eaten without that. Still no weight loss.

Week 4-6 we’re tiring and along with the sores in my mouth, I was just feeling lousy, red face, red neck and a sore throat in week 6, along with some mucous and obviously some changes to food taste. Not the metal taste that some people express but more that I could not taste it or the food was bland. I also was often left with a sour taste in my mouth.

So six weeks completed but I heard the real fun starts in week 7 and part of 8. Same symptoms from week 6 but my skin was starting to peel slightly but really believe all the prep work that I put in was worth it you can barley notice any peeling, more mucous but not crazy and a little dry mouth. I lost about 7 lbs during this time so in my mind I am still plus 13 lbs. I can eat soft foods but hard foods are too difficult right now.

wbcgaruss

https://csn.cancer.org/discussion/comment/1710016#Comment_1710016

Also, I forgot to add to my original post on this that after getting the piece of turkey stuck and I couldn't get it to move either way I determined that it was not something that was going to dissolve anytime soon and I had to get something done about it. So I went to the hospital and they put me under probably mild sedation and took it out. I was a bit embarrassed but the doctor saw me after I came to and said he now had someone with a piece of ham stuck in their throat he was doing next. From chatting with him I found it is somewhat common that this situation occurs.

If you get dilations they can only do a little at a time stretching your throat because too much could cause a tear. So they will do a little at a time with time in between. You will notice a little soreness and discomfort though not all that bad for 2-3 days and then be back to normal after that.

Take care, God Bless

Russ

wbcgaruss

stickman, I sincerely believe that your weight gain and preparation and getting into a routine and mindset helped you get through this with minimal problems so far. Plus all the research you did ahead of time as to what to look for and what to prepare for and how to do it.

As for treatment methods, I think the people who get surgery and neck dissection then the radiation have it easier is because with just the radiation and chemo your cancer has to be eradicated with those two modalities and I believe it leans heavily on the radiation side of it which makes treatment and recovery more difficult and long term effects and issue. When surgery is involved a tumor is removed instead of burning it out with radiation.

But there are a lot of cases where radiation and chemo can be a real blessing as in my case with throat cancer where surgery would have been invasive and disfiguring.

I am so glad you are getting through this and doing well and staying so positive.

Wishing You the Best

Take care, God Bless

Russ

stickmanfob

Making the turn on seven weeks and entering week 8. Week 7 was difficult but am making the turn for the better headed into week 8. Sores are starting to heal and able to eat more solid foods. Still can’t eat without MM and still on pain meds but never more than Tylenol. Mucous is reducing and don’t believe skin will “peel” off. Neck is getting a little stiff since I haven’t been able to do stretching exercises because of my neck skin and not sure how my swallowing will be since I haven’t been able to do those as well due to sores for a few weeks as well. Taste is still off and really haven’t experienced the dry mouth as bad as others.

wbcgaruss

As you have found out stickman, you are very thankful for even the smallest improvement. You are headed in the right direction-Wishing You The Best

Take Care, God Bless

Russ

stickmanfob

Hoping this thread gives some ideas of the radiation process. Neck is starting to peel and makes wearing clothes slightly difficult. Sores are healing in mouth and starting to eat without magic mouthwash. Throat is somewhat sore and food taste is off. Off all pain medication. Being able to see the light of the end of the tunnel is a great feeling.

wbcgaruss

stickman I am glad you are progressing and are starting to eat without magic mouthwash and are off all pain medication. Pelling neck, yeah like a real bad sunburn but this time it's Radburn. Glad you are coming out of the tunnel.

Take Care, God Bless

Russ

stickmanfob

Hello everyone! Haven’t been on this site for awhile now. It’s been one year that I had surgery. My guess is that many of us who survive this get PTSD reflecting back on a time that life became confusing and full of fear. This site was extremely helpful for me to get through this process. Reflecting back on my posts - they were full of fear, questions and trepidation. Stuff was going on with my body that has never happened before and the information on websites are so outdated.

I honestly forgot that this a year went by my surgery. I’m not out of the woods yet (I think you need to hit 5 years for that) but like my chances and think the overwhelming majority of this cancer does not have a reoccurrence so try not to think about that and live and appreciate each day more so than before I had this. My doctors seem nonchalant about this and tell me that doing scans are now unnecessary.

For those if you who have this, it’s going to suck for awhile but there is light at the end of the tunnel and it will get better. Hang in there guys. You got this!

wbcgaruss

Well, Stickman glad to hear you are doing well and glad you are checking back in.

I just want to say that the 5-year mark is sort of a cancer standard probably because of the test of time of most people that go through this that the majority of them that get to the 5-year mark do not get cancer again.

So I think if you get to the 5-year mark you can relax to an extent hitting that established precedent.

We all know the possibility of cancer and figure it's always someone else who gets it, that is till suddenly we have it.

But in my mind and many others on here once I got cancer that idea was shattered for good. It seems now that we are vulnerable like any other person to get cancer but we didn't think that way previously. Personally, I am not concerned about what year mark I get to I know cancer can show up again, OR NOT. But that doesn't mean I live in fear and anxiety all the time, I just set my sights to live as normally as possible and shove bad ideas way back in my head so they are outta the way.

Don't count on a day or a set time just live and don't hold back.

I say this because I was just shy of my 5th year and I got my second cancer and then about a year later my third cancer. There was a lady in our local support group at Ann Barshinger Cancer Institute who was post-treatment for 8 years and her cancer came back.

So you just need to hit a balance of healthy caution with not too much time spent on thinking of the negative. As far as I am concerned since my last episode I am done and if cancer shows again, well it's a new cancer and a new challenge and a new journey, and may God's will be done.

One thing Stickman, I would question your doctors on is the follow-up scans, you say they feel they are not necessary. In direct relation to the 5-year cancer-free concept, it was also a normal thing to follow an H&N cancer patient and probably other types of cancer patients also do for the 5-year period with follow-up appointments and scans. And many times, not PET Scans but at least CT Scans, with or without contrast. At the bare minimum a H&N patient should probably at least have a chest x-ray once a year because any metastasis of H&N cancer usually goes to the lungs. I have never heard of someone having no follow-ups in their post-treatment environment.

I tell you all this not to upset you or anyone else just use good caution and enjoy life and your reprieve from cancer. Enjoy each day, each minute to the fullest and if you are like me they are more meaningful now in so many ways.

Wishing You The Best

Take Care, God Bless Russ

NEGU (Never Ever Give Up)