Glenn, I appreciate your opinion here. I am not trying to discount your advice at all but when you say "radiation to one side has had less than positive results", I'm wondering what the circumstances were. Were these people who had larger cancers than mine perhaps? Did they have tongue cancer? Had they already had a neck dissection on the side of the cancer that showed no lymph node invovlement? I have to believe that an experienced radiation oncologist at a major cancer care center would have *some* reason for thinking radiation on one side was a reasonable thing to do.

As for the chemo, I would have it if I could. Because I am recovering from an infected lumpectomy and sentinal node removal on my breast, I don't think I can--at least not when I start radiation.

I'm sorry if this comes across as defensive. I'm feeling a bit stressed from your response. For a variety of reasons, packing up and moving to Boston for treatment seems extreme and also next to impossible to me right now. The advice one is given here to begin with is to get an opinion from a major cancer care center. I have done that (from two) and they disagree. But the folks at Roswell Park have reviewed my case twice now according to the radiation oncologist from there. I'm thinking they must have some reason for their plan.

Also, I want to take the most aggressive approach but I am constrianed by my own body and the results of fighting two cancers at once. I am well aware of the dangers of recurrence already and scared to death of them right now.

Nelie,
For what it's worth, I had radiation focused mainly on the right side of my mouth and neck. The radiation oncologist at Mass General said that given the location of my tumor (on the very right side of my mouth between my teeth and gum) the radiation fields she was using would do the job. I pushed the radiation oncologist about this and she was convinced that her approach would be successful. After reading posts on the board, I wished in retrospect that I had both sides radiated. Time will tell, I'm 10 months post-radiation.
You might also want to ask your radiation oncologist about the possibility of combining Erbitux (a monoclonal antibody treatment, not a chemo drug) with radiation. A recent Phase III trial indicated that this is a more successful approach than radiation alone and it might not interfere with the healing from your breast cancer surgery. Best wishes for a successful treatment. - Sheldon

Nelie,

You want to throw everything at this cancer the first go around!! It is a very unforgiving diaease. Packing up & moving to Boston is a little detail compared to what your up against.
Remember all doctors are human beings and even they don't have all the answers. It is often not caught early enough due to them not seeing much of our type of cancer. Oral cancer is rarely seen at small local hospitals. I found out after my treatment that I was the 5th oral cancer victim they saw in the last year. Doesn't
give one a lot of confidence in that realm.
I hope you make the right decisions for your situation. Best of luck. No one should have to battle cancer three times.

Danny Boy

well I'm feeling better after talking to the medical oncologist here. He is obviously very well-read and educated on this and said he can see why I want the concurrent chemo, agrees the New England Journal of Medicine article suggests there would be some substantail benefit in reducing risk of recurrence (he said as a rule of thumb, if stage II has half the recurrence rate of stage III and IV averaged together to begin wioth, then you can think the treatment might have half the benefit which would still mean a 5-8% lower risk of recurrence for me as he saw it. Sounds good to me) AND he said it would probably be of benefit even if I started it a week or even two weeks into the rad. therapy so there will be time for my breast to heal and then have it.

Yay!!!

God life with cancer is so bizarre. Who ever would have thought I'd be cheering about "getting to" have chemo along with radiation?

I did ask him also about what he knew about the chances of having cancer in the opposite side lymph nodes at this stage if the cancer was not in the left side ones and he said he thought it would be less than 5%--possibly just 1 or 2 %-that it's really pretty rare. But I also sent an email to the radiation oncologist I saw at D-F about this asking him what he thought the risk was. I really just want to know risks and benefits and feel I'm making an informed decision.

I'm with Glenn on this one. I have spent hours and hours reading about oral cancer. There are few doctors that radiate only one side of the neck. One of our posters, Bob, had only one side radiated and ended up having it recur on the other side of his neck. He had to endure radiation to the other side of his neck. Bob, if I'm telling this wrong please correct me but I'm pretty sure I have my facts straight.
Think of it this way. There is NO WAY your doctor can tell you right now that the other side of your neck is cancer free. Doing radiation will take care of it as it is very small. Left alone and given time to grow, if it's present, it will be a larger cancer and more difficult to take care of.
You probably don't have any cancer in the other side of your neck, but I would not want to take that chance.
Good luck with it!
Minnie

Nelie,

I am really sorry to hear you have had so much to deal with. As I read your post what really stuck out is that you will be the first oral cancer patient receiving radiation. I remember taking my Japanese car that was sold under the Chrylser label (Conquest, aka Mitsubishi Starion). I worked out a deal to get cheaper parts and labor because I liked to autocross and the dealer in Savanah Missouri wanted to train a mechanic to work on this specific car. They only had to re-do about half of the repairs until they learned a bit more. Now, this may be a little different than your specific circumstances but my question to my ENT was tell me EXACTLY how many oral cancer patients you have had and specifically how many with base of tongue primaries. I also had MD Anderson review everything and felt I could choose either one because of the extensive experience at either facility. You may only get one opportunity to battle this beast and convenience, while important, may not be the best factor in choosing via the process of elimination. It sounds like you have already been identified as an "at risk" Stage II, whatever that means.

I wish you the best and hope you receive the absolute highest level of care possible. Fight this battle with all you have.

Ed

Nelie,

I did not want to cause you stress and, being an avid Yankee fan, the last place in the world I would want you to move to would be Boston! I just offered my thoughts on an aggressive approach and assumed, if you got it, it would be near home. On the Chemo, I should have been more clear. When physically able, you should consider it. My thinking was because of the 2 cancers they would want to give you a chemo wash. Anyway, you do seem to have matters well in hand and I'm glad you are a candidate for Chemo.

Glenn

Nelie,

I would recommend having the chemo and radiation together as well. Chemo gives the radiation a little extra "kick" if you will. Not only that but as it was explained to me it also helps in case there are any "escaped" cancer cells. You want to fight this hard the first time and hopefully only time. Even if you have to start it a week later do it! You have mentioned that you think that you can't do the chemo right away. Has your Dr. actually told you that?? I also highly suggest getting a peg. By the third week of radiation I had lost my tast buds and my throat was sooo sore I could barely swallow. The feeding tube was a lifesaver. It made getting thru chemo/radiation much easier. The last thing you want to suffer through daily is trying to eat. Knowing you can get some nutrition even thru the tube will make this fight a little more manageable. And just keep drinking the water! You will notice dryness. Lots of water! Good luck to. You are a very brave woman. It is very stressful having to make all these decisions and feeling like your life could be on the line. Make your choices based on what you feel comfortable with and know that if you need to ask a hundred people before deciding that's your right! Once you make your choice feel positive in your decision and FIGHT, FIGHT, FIGHT!!!
Good luck to you!
Carol

Yes, I'm definitely getting a peg tube. I talked about that with the oncologist last night.

And what the docs have said is the open and draining breast incision has to heal all the way before chemo starts. This makes lots of sense as chemo slows down or stops the healing process for something like that as well as lowering my ability to fight any remaining infection in there. Last week on Wed., the breast surgeon looked at the open incision and said she thought it would need about 3-4 more weeks(it was a very deep incision)---that would bring me to 1/2 a week to a week and 1/2 into radiation as I am counting it.

Glenn, As a staunch Red Sox fan, I forgive you for being a Yankees fan. So is my husband. (There was a lot of gloating going on by *someone* in our house last fall and it wasn't him !)

Ed, I appreciate the car analogy and that the facility is new is of a lot of concern to me but I'm not sure the anaology quite fits. Since I am being treted by a radiation oncologist from Roswell Park who has seen plenty of cases of head and neck cancer, I think a better analogy is you take experienced machanics and bring them to a new shop and then take your car there. Are you the first person to get a car like that serviced there? Yes. But the mechanics aren't seeing that car for the first time--they just got their experience elsewhere.

However in car shops they don't have the equivalent of nurses I don't think. THAT is where lack of experience might make a diff. The *nurses* won't have seen this before. I'm not happy about that--but I figure it is something I can live with for the benefit of being treated near home.

Carol, thanks for the suggestions and the urging on to fight this. I'm sure I'll be coming back for more of that as I go through this.

I just wanted to post a brief update on the fly to everyone here who has been so helpful. I spoke again to the radiation oncologist from Dana Farber who has been so incredibly helpful about the risks of radiating only the left side of my neck and he said the risk was too high--very much along the lines of what some of you have said here. It's not that there's a high probability that the cancer would be there and not in the nodes on the left but, if it is, it is quite possible it wouldn't show up on a CT scan and so teh only way of being sure that possibility is treated is to include that side of the enck in the radiation plan. He confirmed what I thought he had said before about how the partid can be spared, at least partially, using IMRT radiation if they have an expert programmer.

So then I called my radiation oncologist here again , he spoke to the radaition oncologist there again, and it looks like I will be able to stay here and have IMRT radiation on both sides of the neck and still have at least 50% of the parotid gland spared from radiation. The setup will be done by someone from Roswell Park who has expertise in IMRT radiation. Also I'll be having Amifostine, which I gather has helped some people here with recovering their salivary function after treatment.

So I'm feeling good about having treatment here right now but also glad I asked about the original plan. I'll be getting the CT scan that lets them do the mapping on Tusday next week, because I had two teeth pulled a couple of days ago and it takes time for the gums to heal and from there it will be a week or maybe week and 1/2 until the first day of radiation (during that time I get a PEG tube put in). By the start of rad., my breast incision, which is now still undergoing wet-to-dry packing to allow it to heal, may be close enough to healed up that I can have the first dose of chemo right on day 1 instead of having a delay......

Thank you all for your responses here. I'm sure I'll be back with lots of questions as I go through treatment.

Nelie