Hi, I am new to this forum but find it a well of great first hand information. My brother-in law is caught in a dilemma. If we could get some input, would very much appreciate it. He has been diagnosed with SCC of the base of the tongue. The primary tumor was very tiny but spread into one of his nodes. He had a neck dissection done on one side and all other nodes were cancer free. He has just begun IMRT radiation, 3 days into it. His neck surgeon told him he would just need radiation and no chemo. The radiologist and oncologist are pushing him to have the Cisplatin. The neck surgeon was irate that they were suggesting this to him that it wasn't necessary. The radiologist and oncologist are saying it will boost the radiation. Are the side effects of chemo worth it. He is very confused and doesn't know what to do. He is 60 years old and has a slight heart condition.

The side effects are fairly intense but manageable. The data from other types of cancer suggest a significant improvement in the 5 year survival rate where Cisplatin is used as an adjunct to radiation (I have read numbers as high as an additional 15%). I am a little surprised by the surgeons attitude. Tongue cancers tend to be very aggressive and I am confused that he wouldn't want to hit it with all of the weapons available. It sounds to me like the radiation is the primary form of treatment and I would go with the RO and Oncologists advice if it were me. He needs to decide quickly. Cisplatin has to be administered every three weeks and usually started the first day of radiation for maximum effectiveness.

Recurrences are always bad news - it is far better to be aggressive as possible from the beginning.

What was his staging? Is he going to a comprehensive cancer center?

Hello
You only have one chance to beat this disease , I cannot understand why any surgeon in his right mind would try and dissuade a patient from attacking this with all the ammunition available.
It sounds a bit dodgy to me... try and encourage him to get a second opinion.. fast.
Marica

My daughter had base of tongue SCC. It had spread to 4 of her nodes, making it stage 4. She had surgery, then radiation, but no chemo. The surgical margins were clean and the tumor was well-differentiated and most of the doctors thought her chances were good enough with RAD only. They were wrong. She didn't survive. Needless to say, if it were me, I would do chemo with the RAD. Just my 2 cents.

Rosie

Hi,
Gary is correct that there are studies indicating that the combination of radiation and cisplatin can yield better results than radiation alone. You don't mention whether or not your brother-in-law is being treated at a comphrehensive cancer center.

I would strongly recommend going to a comprehensive center if he's not at one currently and getting a second opinion. Doctors can have diffent level of agressiveness when treating this type of cancer. As many people on this board have said, you want to hit this disease as hard and fast as you can. Hope this is of some help. - Sheldon

I recently read those studies too. There is very clear data that for Stage III and IV cancers, that Cisplatin in combination with radiation greatly decreases the chances of recurrence.

Where there seems to be genuine disagreement about whether it helps is for Stage II folks with some risk factors, such as I have, when radiation is indicated for them.

I had over 20 nodes removed and all were clean but the path. report indicated signs of perineural involvement, and the tumor was fairly thick. Becuase of this there seems to be general agreement that I need radiation (though some disagreement abotu the form of it, I will post about this elsewhere), but not agreement abotu whether combining it with chemo should be done.

I now have opinions on what to do from two cancer care centers. I am being treated at an extension facility of Roswell Park in Buffalo and I went to Dana Farber for a second opinion. At Dana Farber they strongly recommended concurrent chemo, the radiation oncologist here said there wasn't strong data that it had the same benefits for Stage II folks. This is because of the two experiments done to test whether the concurrent chemo was more effective only one (which was done in Europe) included hiugh risk Stage II patients and they did not report their results for each Stage spearately.

After visitng Dana Farber, though, I was ready to throw whatever ammunition I could at this cancer. I would go for both.

It may end up being a moot point for me, however, because I also am fighting Stage I breast cancer at the same time as my tongue cancer and the lumpectomy/sentinal node removal incision sites (had this surgery done 3 weeks ago after the surgery on my tongue 5 weeks ago) became infected and had to be opened and drained so I now have a deep open wound healing on my breast, and a smaller one under my arm, which will probably still be healing when I start radiation for the tongue (since the incisions had to be opened and driane what they do is rinse it out and pack it with gauze each day at the hospital--luckily we only live 2 miles from there--and it heals from the inside out. Last week they were using two large gauze padsto pack it, this week it has healed enough to take only one). I've been told there is no way they will give me chemo if the breast incision is still healing since it would stop the healing process in its tracks. And also told that the radiation on the mouth shouldn't wait for that healing to occur.

I got the feeling they didn't want to do it anyway in my acse though. Although it is apparently part of the standard protocol in Eurpoe for treating high risk Stage II, it is what the Roswell Park rad. oncologist called a "category 3" for the protocol here (meaning. I gathered, that there is no strong agreement among folks at the different national cancer centers that it is of benefit) for Stage II.

Again, though, this is NOT the case for Stage III. It is pretty clearly of benefit if you have any node involvement.

Nelie

Hi,
Thank you all for your input. If anyone else has any further advice it would be greatly appreciated. My brother in-law was seen and had his surgery at Sloane Kettering in Manhattan. His surgeon there is a very respected Doctor worldwide. He is having the radiation at a satellite branch of Sloane Kettering closer to home and outside of the city. Which makes it difficult to decide whether to listen to the Oncologist and Radiologist here or the highly respected surgeon in Manhattan. He also at a younger age suffered a mild heart attack and had angioplasty done about 10 years ago. His cardiologist said the chemo would not affect his heart. His primary tumor at the base of his tongue is 4 X 3 x 2 cms and the tumor in his node was 4 cm. He is borderline Stage IV. After reading your replys he is seriously considering the chemo. The earliest he would be able to start would be this Wednesday, wondering if starting late will ruin the effectiveness? Also, if anyone could give any details of what he should expect to happen, would be appreciated. Think it is better to be informed than surprised. He is quite terrified. Thank you all so much for your help. Best wishes to you all.

I don't know if starting late would make a difference in effectiveness but I'm curious about the answer to that myself since I might be able to start with chemo a week or two after I start radiation.

Lrn10, welcome to the site. I don't know if the delay will affect the effectiveness of cisplatin. I can say I had it with rad and it was explained to me that it would kill any microscopic cancer cells wondering around my body that were looking for a home. That in itself was enough for me.

I had no trouble at all with the chemo, I had trouble with the antinausia meds they gave me before the chemo. There are apparently two or three different types and I reacted to one type and they put me on another and I had no problems from there on. And whether it is needed for Stage II or III or IV or not, I don't think it will hurt if used on a stage that it isn't particularly helpful. And it might help, so that settles it in my mind. You have to use every possible weapon to beat this disease.

I was a stage IV with one node positive and I had surgery and radiation, no chemo. This doesn't mean you shouldn't do chemo, I'm just chiming in as one who didn't have chemo and will celebrate my two year anniversary soon.
Minnie

In Hong Kong, the latest practice to treat Head and Neck cancers of advanced stage is concurrent treatment of chemo and radiation. I had 48 rounds of radiation and 4 cisplatin in the first 4 weeks of the treatment. Surgery was originally planned but after the treatment, the cancer had disappeared and I need not have operation. Ever since the treatment, I have been in remission for over 3 years already. There are of course side effects of cisplatin but are tolerable.I am surprised there is argument among different doctors. In my case the team of doctors worked out the best plan for me and I just followed their decision.

Karen.

Thank you all for replying. The Radiologist explained to my brother in-law today of the possible risks of having chemotherapy. He told him the mucositis is severe and all the negative possiblities that could happen with the chemo, even death. I guess they have to tell you all these things but created alot more anxiety and indecision. He will be getting 100 mgs of cisplatin for 2 days and then again the same thing in another 21 days if he decides to go through with it. Is this the typical dosage? Did anyone have a very hard time with the mucositis and how did you manage this. He is afraid of the possibility of choking. I earlier posted the size of his tumor in error. The tumor in the lymph node was 4 x 3 x 2 and the primary was just a little speck that they removed. Don't know if that makes any difference. Did anyone have this treatment who is around or over 60? Thanks for your help.

Lrn10,

There is a posting on the OCF "oral cancer in the news" section about the results of a clinical trial that combined Erbitux and radiation therapy. The link to the story is:
http://www.oralcancerfoundation.org/news/story.asp?newsId=667

The relevant thing here is that Erbitux is a monoclonal antibody treatment, not a chemotherapy drug. It could be that this combination avoids the adverse effects of chemo but provides advantages over radiation only. Best, Sheldon

Lrn10,

I have known people in their 70's and 80's that have made it through the chemo and I know from personal experience I was much more of a whimp than they were! With the stage of your brother-in-law, I do not understand how a trained professional could suggest that increasing the odds for survival would depend on the ability to tolerate mucositis. There are many ways to deal with all the side effects and either treatment can affect different people in different ways. However, when it comes to even a slight better chance at beating the beast, I would do it again in a second.

Likewise, if the doctors mentioned I had any risk factors, sign me up for more treatment! When you are facing 28%-30% 5 year survival rates, I will glady choose the 30% and do everything in my power to make it through the treatment.

Many have traveled this road and there are still no guarentees. Doing everything possible may at least provide a little more peace of mind. It is already a bit scary and unnverving at times while on the road to recovery. Don't short cut for any reasons since there are none that are valid that I know of.

Ed

I had surgery, radiation & cisplatin. Slash, burn & poison! I am almost 10 months out & no reccurence today. I say hit as hard as you can as early as possible w/everything available, fight like hell & hope for the best! Erik

Lrn10,
I'm with the others on using chemoradiotherapy. It's a tough combination, but there are older people that have gotten through it. My mom was 71 when she started her treatment. She is about 18 months post treatment and on her road to recovery. We agreed to attack her disease with everything available (surgery, induction chemo, chemoradiotherapy, more chemo and another surgery). Our attitude was to go in there and nuke this thing with whatever was available given mom's overall condition. I wish your brother-in-law, you and your family all the best.
Take care.
Dave

Lrn10, I agree with most here. I was 53 when treated and had tonsilectomy, rad/chemo (ciplatin every 21 days), and radical neck dissection. I wanted to do everything to get it dead and out of me to insure that this cancer never bothered me again and try to kill any of its cousins that happened to be floating around. A little discomfort now could be tolerated, but ever wondering if I got a recurrance if I had only treated this round tougher whether I wouldn't have had a recurrance was unacceptable. So I would strongly recommend the chemo to go with it. Besides, the chemo was one of the easiest treatments for me. They give you anti nausia drugs to help deal with the problem. Once they find the right anti nausia drug, it is fairly easy. Good luck.