One Side Vs. Two

I was recently diagnosed Stage 1, T-1, N-0, M-0 of my left tonsil, 1.5cm tumor. I consider myself very lucky indeed to catch it so early. No Chemo, no surgery, 7 weeks of radiation on just the left side. My Radiation Oncologist is using IMRT/IGRT and says he is going lateral instead of horizontal. He cliams this will minimize the side effects and not damage the glands or tissue on the right side. Said there is only between a 3 - 10 % chance I'd get it on my right side and if so I'd have to be retreated on the right side.

Has anyone had a similiar treatment and if so, were the side effects less??

Looking for feedback.

Thanks,

Rick

I had a 2 cm tumor in my left tonsil. T2N0M0. The first opinion was radiation one side. My second opinion(at Dana Farber) said radiation both sides, a feeding tube, and chemotherapy(for a surgical margin that wasn't quite clear). They gave me all the stats regarding recurrences and I went with the second opinion. I am now 6 months out of treatment, doing fine.

 

On 12/24/2007 Girlcat36 wrote:

I had a 2 cm tumor in my left tonsil. T2N0M0. The first opinion was radiation one side. My second opinion(at Dana Farber) said radiation both sides, a feeding tube, and chemotherapy(for a surgical margin that wasn't quite clear). They gave me all the stats regarding recurrences and I went with the second opinion. I am now 6 months out of treatment, doing fine.

 

What were the stats? Both MD Anderson and my local guy suggests one side w/ a 3 to 10% chance of recurrence.

Thanks

My tumor was discovered during a routine tonsillectomy. They had no idea they were going in after a tumor.

Surgery alone---30-40% recurrence rate

Radiation one side---10-15% recurrence

Radiation both sides---0-10% recurrence

Upon a second look at my pathology slides by a different lab(Dana Farber), they discovered my tumor margins were NOT clear as reported before. This would mean I would need chemo too, to clean up anything microscopic.    When my tumor was dicovered by Dana  Farber to be HPV+, I got a smile from my doctor for the first time and he said 99% cure rate. HPV+ tumors respond much better to radiation.

In retrospect, if my ENT had been aware of the HPV link, I would have probably had my tumor removed before it reached stage 2. And if I had an Oncology ENT surgeon remove the tonsil there would have been a greater likelihood of clean margins.

Good luck to you, and I would be happy to answer anymore questions you have to the best of my ability.

How did they find out it was HPV related? I haven't heard how I got it, or when I got it. I'm really confused about this HPV thing and how I would have contracted it (if that is what mine was caused from). I've been married for 21 years.

Dana Farber tested my tumor. They are a comprehensive cancer center. They do tons of research and clinical trials, so it was of interest to them to see what caused my tumor, as I was young, fit, and otherwise healthy. That being said, if I had been treated at the hospital where I was originally diagnosed, they would NOT have done the testing on my tumor. Ask your oncologist if they test the tumors where you are being treated. As far as a specific test for HPV(such as a blood test) I do not believe there is one. MD Anderson has a great reputation and I would be surprised if they did not test your tumor.

Thanks, I'll check w/ MD Anderson. I'm sure they would have interest in mine too since I've never used tobacco and am otherwise healthy. I also don't understand that since my path. report says 1.5cm isolated to left tonsil, T1, N0, M0 that they just don't cut the tonsil out and radiate the area. Plus MD Anderson said that they believe my cahnces of it moving to the right side is so slim they are only doing one side. While I like the idea of less discomfort in recovery, sure don't want to miss anything. How was your recovery?

 

On 12/25/2007 rick51 wrote:

Thanks, I'll check w/ MD Anderson. I'm sure they would have interest in mine too since I've never used tobacco and am otherwise healthy. I also don't understand that since my path. report says 1.5cm isolated to left tonsil, T1, N0, M0 that they just don't cut the tonsil out and radiate the area. Plus MD Anderson said that they believe my cahnces of it moving to the right side is so slim they are only doing one side. While I like the idea of less discomfort in recovery, sure don't want to miss anything. How was your recovery?

Hi, Rick---From what I understand, you have not had your tonsil removed? I think some doctors like to shrink the tumor first with radiation, then go after it sugically if there is any tumor left. I think my tonsil was removed primarily because they did not realize it was a  tumor. Since you are at Stage I, I am sure the advice of one side only is on target. Initially, with my stage II tumor they were only going to do one side. As Dana Farber investigated further, they decided to throw everything at me. I responded very well to treatment. I only lost 4 lbs. during treatment, and continued to eat solid foods. I never required narcotic painkillers, only some advil here and there. I actually went rock climbing the day before my last rad and chemo. I never got any mouth sores, and didn't need to use my feeding tube. My doctors called me the "Phenom". Six months out of treatment the biggest problem I am having is scar tissue in my neck, which I am receiving physical therapy for.

 

 

On 12/29/2007 Girlcat36 wrote:

 

On 12/25/2007 rick51 wrote:

Thanks, I'll check w/ MD Anderson. I'm sure they would have interest in mine too since I've never used tobacco and am otherwise healthy. I also don't understand that since my path. report says 1.5cm isolated to left tonsil, T1, N0, M0 that they just don't cut the tonsil out and radiate the area. Plus MD Anderson said that they believe my cahnces of it moving to the right side is so slim they are only doing one side. While I like the idea of less discomfort in recovery, sure don't want to miss anything. How was your recovery?

Hi, Rick---From what I understand, you have not had your tonsil removed? I think some doctors like to shrink the tumor first with radiation, then go after it sugically if there is any tumor left. I think my tonsil was removed primarily because they did not realize it was a  tumor. Since you are at Stage I, I am sure the advice of one side only is on target. Initially, with my stage II tumor they were only going to do one side. As Dana Farber investigated further, they decided to throw everything at me. I responded very well to treatment. I only lost 4 lbs. during treatment, and continued to eat solid foods. I never required narcotic painkillers, only some advil here and there. I actually went rock climbing the day before my last rad and chemo. I never got any mouth sores, and didn't need to use my feeding tube. My doctors called me the "Phenom". Six months out of treatment the biggest problem I am having is scar tissue in my neck, which I am receiving physical therapy for.

 

 

I am amazed! What a success story. Good for you, all I ever hear is the horror stories of the side effects. To what do you contribute your lack of all the side effects? I'm trying some pretty odd things like eating red bell peppers (heard that helps mouth sores). Even looking into accupuncture. I am impressed and encouraged. No, my tonsil is still there. They feel it will be destroyed in the radiation process. I just want to get started. Originally I was set to start on January 2nd, now January 7th. It bugs me to know I have a growing/spreading cancer in my body. I want it attacked!!

Your story is quite the inspiration. I hope I'm as lucky.

Rick

Hi Rick---I agree, it's completely nerve-wracking waiting for treatment knowing what is in your tonsil. I felt good after my surgery until they told me there was probably something microscopic left behind. Then I was freaked out. I lost 7 lbs after my tonsillectomy(down to 111lbs.), so the first goal was to beef up a bit before treatment(as losing 30-40 lbs is the norm during bilateral radiation). So I regained the weight. The first thing I read re:tonsil cancer was a very positive story by a woman with stage 4 tonsil cancer. Reading this would color the way I handled my own treatment. This woman had done very well, and I wanted to as well. I refused to allow my doctors to tell me what my side effects would. They didn't like that, but for my own mental health, I knew it was best. I stayed off the internet. So before my treatment began, I had no horror stories to contemplate. I was not allowed to take supplements, so I complied with that. I was never nervous getting bolted down for radiation, and used the opportunity to meditate and use guided imagery. I never looked upon the chemotherapy as poison and instead imagined it doing a search and destroy on whatever cancer cells were left behind, while leaving my healthy cells intact. I had a minimum caloric and fluid intake that had to met each day. The day was not over until I had 1,500 calories in me and 80 0z of fluids. I had acupuncture every week, as well as reiki and massage therapy. I thougt of my treatments as an afterthought each day--just another errand. Left the house at 6:30 to go treatment, then stayed busy all day 'til about 6PM. I did not work during treatment, because I had moved an hour from home to get treated, staying with extended family for 2 months. I religiously did mouth, throat, and neck exercises, starting immediately after my tonsillectomy. My neck did not get burnt from the rads, but very, very tan. I applied Aquaphor as often as possible during treatment. My neck peeled 1 week post TX, then looked normal. At my one month post TX check up, my doctor looked in my throat and said "It doesn't even look like you got treated!"

My tips for you would be:

Stay hydrated

Keep up the calories

Think positive

Use every complimentery therapy that is okayed by your doctor.

Do throat and jaw exercises whenever you can--multiple times a day

That's all I can think of for now. There are a lot of horror stories out there, but I believe it is important to tell my story, to give others a little hope. It is not a fun treatment but with the right mental attitude you are going to come out of this just fine!