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Radiation for six weeks

booklady05
Posts: 4
Joined: Feb 2011

My surgeon said he did get all the cancer out of my mouth, but I need to have
six weeks of radiation. After reading the posts about the toxicity of flouride, and dry mouth and breaking teeth, I am very worried about this. I am trying to find a great radiologist that cares about people in Southern California or the San Joaquin Valley of California. Have an appointment at the City of Hope in Duarte on Monday. I'd like your comments -- if radiation is so toxic, kills teeth, dry mouth forever, sores forever, then why six weeks of it when the doctor believes through the pathology tests during surgery that he got it all out? And toxic flouride forever in trays also.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Booklady, welcome, and I'm glad you got a positive report from your surgeon. It's great to have that going into imponderable choices.

Yes indeed, why have radiation if the surgeon says he got the cancer. The quick answer is that he can't be sure he got every cancer cell. He wants to be sure, and radiation is the treatment. I'm ten months from radiation, and have a lot of my taste and maybe 60-70% of my salivary action back. I never had mouth sores and still haven't and I had six weeks of radiation treatments. My throat was still very sore, a lots of mucous during treatment, but effects vary. No guarantees unfortunately.

There used to be a toxic thread on flouride here a minute ago . . . but I believe it's been lost. I don't want to re-stir the pot, but here's my thought. I've never used flouride trays or flouride (though my dentist who I know to be competent and compassionate) did prescribe a toothpaste type flouride treatment which I brought home. I'm lazy, and what I read of posts sounded like tooth problems happened either way. There are people here who decided not to use flouride based on their own studies of published scientific data. There is also an army of dental patients out there who use it, and I can't help but think that the doctors and dentists that prescribe them include a good number of responsible researchers and practitioners.

Slay one dragon at a time.

I have a great radiologist, my favorite oncologist, in Fresno, CA. If you decide to have the radiation treatments and would like to meet her, please use the CSN email and contanct me for her name.

I wish you the best, Hal

MarineE5
Posts: 747
Joined: Dec 2005

Booklady,

I would have to go along with what Hal said in his reply. The main reason for the radiation is to get any stray cancer cells that may be lingering. It only takes one missed cancer cell to start this all over again, so if we are going to battle this beast, why not knock the stuffing out of it...

I have been using the flouride trays and now recently switched to the flouride gel. Yes, my teeth might be a bit more brittle, but I am aware of it now. I brush often, and use the flouride daily. From what I have read and try to do, is to not swallow the flouride while it is in my mouth. After using the trays for 5-10 minutes, we are not suppose to rinse our mouth out with water for 30 minutes. After that time, I rinse pretty good. I have not had any ill effects so far.

Each of us has a choice as to whether we want to do what is instructed to us to do for our protection down the road. I choose to use the trays/gel because honestly, I fear that I might get some gum disease and then in turn damage my jaw bone and on and on. If I can prevent that from happening, I'm for it.

What works for one person, may not work for the next person. So we have to be our own advacate in this journey as well as the Doctors that try to help us.

My Best to You and Everyone Here

mixleader
Posts: 267
Joined: Oct 2010

Hi, Booklady. This sounds like a post I could also have done back in July of last year. I asked myself the very questions you are asking right now. I figured if the surgeon said he got all of the cancer, then why should I have to go through the unknowns of radiation? As has been pointed out already, there is no way to be sure. I had an oncologist compare this to a dandelion plant. Blow on a mature plant and seeds go everywhere. If one of those takes root somewhere, you have a new, pesky, plant. So, I conceded to have the six weeks of radiation and I was very apprehensive (actually, I was scared). But, with a good radiation oncologist and a supportive staff and a great home support, I was able to get through the radiation with only moderate side effects. Yes, all cases are different and I don't think anybody can predict exactly what is going to happen. The staff where I had my rads were very supportive and I was checked weekly by the radiation oncologist and the whole staff was available any time I had a problem or question. I don't think anybody is going to tell you it is easy, but many of us have been through it. I kept thinking about all of the people who had been through this before me and that gave me some strength to continue. And, there were times during the treatment when I thought I wanted to quit, but I continued on just like many other people on this board did. Stay strong and don't be afraid to question the staff where your radiation is being done. They are there to help you through it, so by all means tell them when something is bothering you so they can help. My best wishes and prayers coming your way. It is good that you have found this site as it can be a big help in getting through this. There are some very knowledgeable and caring people here. Best of luck.

Roger

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Must agree with Hal and Marine, Booklady. How can you best believe the C has been eliminated from you? The rads. Not typical for surgery to be able to completely clear one of the C, so the rads would seem to be called-for.

Your case does bring to mind a very sad history of another from southern California. Awhile back there was a case of one whose C had returned. The Drs. where he was getting treatment are at one of LA's top C places, and they thought it was confined to one side of his neck, and that's all they were treating. Lo and behold, it was also on the other side of his neck in the lymphs, and the placement of the C was problematic, as was how advanced it became while he was undergoing only rads for some time. And, by the time they discovered the C on the other side- too late. I was in private communication with the wife, and what it all boiled down to was her C Doctors at this major LA center just plain missed it, and it cost her husband the chance to survive and still be living. Place where this man was being treated is where you are being treated, Booklady.

This is the big C, Booklady, and the way it must be dealt with is to only error on the side of the aggressive. Read in your profile about your surgery, which was somewhat extreme. You have had a lot done already to rid you of the dreaded C. You've gone this far- the side-effects of the rads just may pale in comparison to what you've already endured.

kcass

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

booklady,
My surgeon removed all of my tumor with clear margins, but based on the type of tumor and the grade it was (Mucoepidermoid Carcinoma Intermediate Grade, stage IVa clinically, stage 2 pathologically T2N0M0) we decided that the best treatment option was to follow the surgery with radiation. my radiation oncologist decided on a 60gy dose given over 30 days of treatment. I had IMRT so she was able to successfully block a large portion of my brain, eyes, ears, throat, and major salivary glands. they targeted my remaining hard palate, my soft palate, my sinuses, my upper right jaw, and surrounding tissues. they were not able to block a small portion of my tongue and upper lip. I used Caphosol to help with mucositis and to help keep my mouth moist. it helped a great deal. I have very dry mouth when I wake up in the mornings on the days I forget to use some saliva replacement (biotene), but after a couple of gulps of water it isn't that bad. I didn't have to have fluoride trays, but I do have to brush my teeth after every meal or after each time I drink something other than water. My sores were mostly gone after about 4 weeks, with occasional recurrences...but these recurrences are my fault. they occur when I eat something that I know is too spicy or if I eat something at too hot a temperature. I can eat just about everything and I am 3 months out. I have even begun to eat some potato chips, just not corn chips yet. I am taking it slowly like I do when I am introducing food to my kids. a little at a time, if it doesn't work I try again in a couple of weeks. food tastes different now, some tastes a lot better, a lot tastes just off, but it is also changing day by day.
I had read the fluoride toxicity posts as well, and to be honest, anything in excess can kill us, it becomes more an issue of what level is the best level for you. for some that risk is not worth it, so they use none, for others even the greatest amount is worth it. we each have a unique journey to take here, so I can tell you what worked for me and how I am handling things now, but there is no guarantee. I will tell you that I was willing to use fluoride trays if needed, but after consultation with each of my doctors it was determined that it wouldn't be necessary as I wouldn't be losing enough salivary gland function.
I felt the risks of having radiation far outweighed the risks of not.
all the best and huge HUGS!
I hope you find the doctor(s) you need...just ask them how they feel about all of your questions.
Hugs again!

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

First, I have to admit upfront, I haven't read the flouride thread.

But I did have seven weeks of radiation (sixteen weeks of chemo also), and I have used the Oral B Flouride Gel going on two years now (post treatment).

I'll have to disagree on a few of your comments above...

***noting that everyone is different****

I didn't have any teeth pulled going into treatment (and still haven't). I have had a crown and two fillings post treatment. Not umcommon for me, as I went in with a root canal, crown and several fillings (pre-treatment).

I did have Amifostine (Ethol) injections each day just before rads....

I have regained nearly 100% of my saliva and taste (during the day), maybe 80% of saliva while sleeping...

No mouth sores ever, or thrush, or anything else...other than the raw hamburger throat for about seven weeks (end of rads and a few weeks longer)...

Like all have already mentioned, the rads are to kill anything still floating around in the general location of surgery.

Best,
John

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