The particulars are in my signature. I am in the process of prepping for Radiation Therapy. I have an appointment early next week to talk with the Oncology doc about being part of a study that uses one particular type of chemo drug with Rad therapy for this specific type of cancer. I have honestly been vacillating back and forth about whether or not to proceed with Rad therapy or not.

My cancer was evidently caused by an incident in which I bit my tongue...it never healed due to constant rubbing on a tooth. Over a period of two years and one negative biopsy...a second biopsy finally returned a cancer diagnosis. I do not have any of the normal indicators of a cancer like this...don't smoke, don't drink, don't chew...never have.

During the Surgery it was discovered that the cancer had moved to a single lymph node and had also begun to infect the lymph tube (the reason for a stage 3 finding). The frozen biopsy's were done during surgery and the doctors are certain they got all the cancer. Radiation Therapy was recommended due to the possibility of cancer remaining at a cellular level that was undetected. The surgeon said that this is where the "science" of medicine and the "art" of medicine meet. He can't tell me that I am cancer free...and he can't tell me that I might still have cells in there. So, they follow the flowchart that helps to decide a treatment path which outlines risk factors and evidently according to the flow chart I am at high risk for a recurrence of the cancer.

I have been doing a lot of reading...trying to educate myself on this as rapidly as possible and have found that there are articles both pro and con all over the internet. I have read about all the really bad stuff to look forward to if I have Rad therapy...all the side effects including the possibility of a second unrelated cancer caused by the Rad Therapy...and the poor quality of life for a couple of years or more. I have tried to weigh that against the possibility (the gamble) of having a remaining cancerous cell somewhere lurking undetected....or maybe there aren't any!...no one knows. Could I use the fact that quite possibly my cancer was caused by the irritation and inflammation and not a biologically inherited factor as a reason to believe that the cancer was totally gone? If I take extra special really good care of myself for the rest of my life...will the neutraceuticals (vitamins and minerals) help to rid my body of any remaining cells?

It is this forum that helped to solidify my decision to pursue the Rad therapy! I read many many of the posts in here. I read of all the issues that folks are facing because of the Rad Therapy. But there was one statement that stuck...All it takes is one cell for everything to begin again. I hate this. I am not looking forward to it. I am scared. But I think it's the right decision.

Welcome to OCF! Im very sorry you have a need for our group.

The only scientifically proven ways to kill SCC oral cancer is thru surgery and radiation with/without chemo. Unfortunately, that fact wont change no matter what your diet is. It doesnt matter what caused the cancer, its there and needs to be eliminated completely or its only a matter of time before it comes back. As you have read, many have had the same dilemma weather to continue with rads after surgery or take a chance with not further treatment. Im very glad you have chosen to go with rads to make certain the cancer is completely destroyed. Living without having rads, not knowing if the cancer is completely gone, only being watched by a doctor for many is a difficult path to take. I dont think I could manage always having "what if its not gone, what if it comes back" in the back of my mind every day.

There are 5-8% of oral cancer patients who have no known cause. The percentage of those patients who have been diagnosed with oral cancer caused by trauma is pretty low, probably even less than no know cause patients.

If you've been reading then you know I always advise patients to eat as much as possible before starting any type of treatment. Eat all your favorites and dont worry about gaining a couple pounds, most patients lose weight during rads. I know its not easy to eat after having such a big surgery. Do the best you can. Check at your treatment center is there is a dietitian or a SLP available to help you learn how to talk clearer and eat with the changes in your mouth.

Best wishes with yoru continued recovery.

Welcome Mrgodguy,

I have no medical background, and just offer my insite and experience as a cancer patient, although my cancer was the tonsil in the oropharynx and lymph nodes, it's clear now.

Your surgeons are most likely following the flow chart from the NCCN Guidelines, from their experience, by the tumor board meeting, and your request and health. For your type cancer, oral cavity, basically NCCN Guidelines go by the TNM grading, meaning Tumor size (T), size and numbet of Lymph Nodes (L) and Distant Metastases (M), and others, which treatment you had was surgery route. From there it can go in several directions, depending on pathology for one positive node with no adverse features to "consider RT" and adverse features, which can involve radiation, chemo, resection or combination thereof.

I'm not sure when you mention it began to infect the lymph tube if it would be lymphovascular invasion, LVI, or Extrascasular spread, which are adverse features, and may influence the treatment, and suggestion for Chemoradiation by your doctors. This would be on the surgical pathology if you have it or can ask your doctor.

The only treatment for SCC in the head and neck is Surgery or Radiation with or without chemo, targeted therapy or combination there of. Being a 7x cancer fighter, I go for treating this cancer as hard as possible, safely, with mininimal side effects, for cure at the first try. If cancer comes back it can be more difficult to treat or maybe not even possible. Through all my treatments I never considered what may or may not occur in the future, but did consider the best treatment and how to get though it. All I knew is I just wanted the cancer gone, although age and minimal side effects do come into play it was more on the doctors advise, and usually followed their advise, although it came to a point none was offered after another recurrence, with adverse features, which is most likely to recur, and knew that, so I changed my medical teams for the better, which really saved my life.

There are a variety of caused for SCCHN. I have heard about injury where the cells go to repair it they don't stop in the right environment to go on to cause cancer. I'm not sure we're at a point to say what the direct causes are from, environmental, genetic, smoking/alcohol related, immune response, but their working on it, and have a number of findings and ideas like from HPV in the oropharynx, and Epstein Barr in the Nasopharynx, and others.

Good luck with everything!

Here are the NCCN Guidelines for head and neck cancer that I forgot to attach, and was reminded by Uptowns post regarding pocket sized guides.

http://oralcancerfoundation.org/wp-content/uploads/2016/09/head-and-neck.pdf

Hello. I'm sorry you have need to be here.
Having been around this board for 6 years now, my answer is there is absolutely no question. You must have the rads to have a chance of beating this cancer. This is a nasty aggressive cancer and you must hit it hard. Sorry if it isnt what you want to hear, but, I've seen too many die thinking they had beat this with just surgery.
I wish you all the best . Everyone here wants you to be a survivor and we will help you any way we can.
Tammy

Hi,

I would just like to propose a slightly different point of view. The members who have had major side effects post rads probably HAD to have radiation and at a fairly high dose. My husband, for instance, had 70 grays which is the lifetime maximum. I don't know if in your case you can have less radiation. Has your RO spoken to you about that? I would start with finding out how many grays you are likely to get, and, if at a lesser dose, if the side effects would be less severe.

Good point gmcraft.

To my knowledge, In order to kill squamous cell carcinoma it takes over 50Gy, but is more like 60-70Gy to the primary tumor and involved lymph nodes, and lesser for uninvolved lymph nodes. I understand there is really no maximum amount of radiation that can be given, except exposure to workers. but it's more limited to the toxicity level of the organ and nearby structures like carotid artery, brain stem, brachial plexus, etc. I've had radiation 5 times, over 200Gy to the same left neck area, which were able to be fit in by different radiation modalities, safely, although my risks were and still are higher in certain aspects.

According to the NCCN Guidelines Principles of Radiation, page 19, for oral cancer, it shows the flow chart for radiation, which either IMRT or 3D conformal radiation is recommended. There is shows 66-70Gy in different fractions, even to 81.6Gy in hyper-fractions.

Brachytherapy, either Low Dose or High Dose, in select cases, can be used, but can be more than 70Gy when combined with external beam radiation such as IMRT. If used as sole therapy, 60-70Gy LDR, 45-60Gy HDR. I've had High Dose Rate IORT.

Proton Radiation, which I had, is not mentioned. It's a very precise form of targeted radiation that limits toxicities to nearby structures, and has no exit wound due to the Bragg Peak. The concentration of radiation is to the tumor. Several years ago when I had it, it was usually used in patients that failed prior radiation therapy. but can be used in clinical trials as primary treatment. It's radiation target is not as broad area, but with pencil beam proton radiation, they can fine tune the range, and sometimes combining it with other forms of radiation like I did.

I know for oropharyngeal cancer, they are avoiding level 1 lymph nodes, and other structures to limit side effects, in certain cases, and deintensification with some oropharyngeal related HPV, which is very responsive to radiation, but HPV involved in other areas. like oral mouth, larynx etc. to not have the same benefit.

The radiation is like a target with the cancer being the bullseye, but it also effects the surrounding areas lets say like a ring, they have different names, GTV, CTV, PTV. Maybe that can be lessened, but certain parts need to be strictly adhered to, and with IMRT the delivery can be dose painted.

I have a friend that lives where you do that opted for no radiation after surgery. I would be glad to connect you two if you like. Just send me a private message and I will see if he is willing, too. Just so you know, I recommended he go through with radiation because even with all the late effects I am dealing with, I would rather someone gather as much information as possible so there is no second guessing later. We have one shot at the beginning and my attitude is anhilate the beast no matter what.

My husband eventually ended up having 110 grays, 70 the first time, then 20 grays twice. The 20 grays were delivered to his airway because he was developing nodes. The first time the RO said he could give 20 grays without affecting the spine. The second time we were told to carefully consider that he would be using up another of his "magic bullets" (he always used the analogy of having 5 magic bullets in his pocket). The point was that if John ever got to the point of needing some more radiation in a desperate situation, he might not have enough "bullets" left.

Incidentally, John got an NED three months after his initial treatment. Then four months later, he was found to have metastases in his lungs. The doctors concluded that it was a couple of stray tumor cells that got away. I am not mentioning this out of a meanness of spirit, but the possibility of recurrence is quite real. In the three years following the metastases, in all of John's MRI's (i cant even tell how many, there were so many) there were never any signs of disease in the primary site.

Dear To Rad or Not to Rad:
For what is worth I was diagnosed in 1983 with Cancer of my uvula, and tonsil told I was terminal got a second opinion and the Doctors decided to do radiation therpary which after 3 months I was told I was clear no more cancer then 3 months later they found I had cancer on the base of my tongue two primary no secondaries. And since I had radiation already to that area they still decided to surgery and remove half of my tongue using a flap from my pectoral muscle. I have been cancer free with just that radiation treatment and surgery now for over 34 years. It wasn't easier and very pain full but I am miracle that likes to brag. Good Luck with what every you decided...Sincerely Newyorkchefsmom