Hi,

I'm at a pretty critical juncture right now as I'm trying to figure out what the right path is to combat this disease. I'd be grateful for any feedback or insights that anyone might have. My backgroud is:

4/27/05: Had a 3cm lyph node removed from my neck that turned out to be cancerous (in total I had 4 nodes removed and only the 1 was cancerous).

5/5/05: Had a pandenscopy and right side neck dissection. 9 more nodes were removed from my neck and none of them were cancerous. So, I had a total of 13 nodes removed and 1 was cancerous. The primary source from the cancer was found to be on the base of my tongue, right hand side. The tumor is about 1.9 cm long and 1.1 cm deep. My staging is T2N1M0 Stage III SCC. I've had CT, PET Scans and MRI's and so far nothing is showing below or above the neck (my kids would say that they aren't surprised about nothing showing above the neck).

My ENT recommends that I go with Chemo-rad for 8 to 9 weeks. Chemo will be cisplatin (100 mg/m2) and will likely be administred the 1st, 4th, and 7th week. Radiation will be on both sides of my neck.

I went for a second opinion to a highly recommended Dr at the University of Minnesota and he agreed. I got a third opinion at Rochester Mayo from a very highly recommended Dr and was told that he would rather do surgery and then follow with radiation (maybe chemo too).

I've gotten somewhat conflicting opinions abut what works best; surgery first or chemo-rad followed up, if necessary, with surgery. Two Dr's told me that the latest results are showing that chemo-rad tx has as good of results as surgery followed by tx. The Mayo guy says that it really is an interpretation of the data and he could show me data that would indicate that chemo-rad had the worst results. All of them say that there really isn't a wrong answer. It seems that the recommendations are associated somewhat with the tendency of the center. Mayo likes surgery, Anderson and likes radiation, etc.

I'm leaning towards having the chemo-rad tx and then having a biopsy done about a month after tx. If the tumor dies, I dodge a bullet and don't have to have suregery on the base of my tongue. If the tumor still has life, I can have the Dr do a "surgical salvage" (i.e., do the tongue surgery). One bad part about waiting is that both the surgery and recovery is more difficult/painful after tx. For example, if I did the surgery now, recovery could be about 2 weeks. If I wait until after tx, recovery could be 1 to 2 months.

Sorry to write so much, but I thought the info would be interesting and help you understand my situation better. Any comments?

Thanks - Tim

Hi Tim,
My understanding is that comprehensive cancer centers usually approach cases like yours as a team. The team will often include an oncologist, a radiation oncologist, an ENT surgeon, oral surgeon, reconstructive surgeons, etc. The treatment decision is the result of a meeting of the team (or tumor board as it is often called). When you talk about your doctors' treatment recommendations, are they coming from an individual doctor or from a team?

If you have different tumor boards, recommending different treatment options, you may want to read the recommended treatment protocols of the National Comprehensive Cancer Network. See
http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf
for more information.

If the choices seem to be one of institutional preference rather than statistically based, you may want to ask in detail about quality of life issues after treatment.

Perhaps some other members of this board can weigh in with more specific advice. It does sound, though, that you are being very conscientious and becoming very well informed, both of which will be very helpful. I wish you the best in deciding upon the appropriate treatment and its success. - Sheldon

Tim,

All I can tell you is that the decision was made for my husband Rad and chemo before any surgery.

He has completed all treatments and we are now waiting to do his scans but the lymph nodes (he had 2) are no longer palpable and the tumor on the base of his tongue can no longer be seen by the ENT. (He could see it prior to treatment).

He is stage III and this was the recommended treatment to begin with. We were also told that the results were as good or better when the txs are done before any surgery.

My husbands ENT is a Baylor doc and his medical oncologist is the Cheif of Hematology and Oncology for Baylor. His rad doc is the cheif of radiology for Baylor. The three of them agreed that the txs were best first before any cutting.

Now please keep in mind that the team makes its recommendations based on each patient so it is hard to say that this is the right path for you. But if it were me and I had 2 docs saying the same thing and one saying something different and given the fact that the one being different is advocating using a knife.... I personally would go with the non-slicing docs. Just my personal opinion.

I have had conversations with all of the docs and the ENT in particular about the possibility that the tumor is still there but just shrank. He said that that would make it easier to remove if need be. I guess that the smaller the tumor the less they would have to remove???

I am sorry that I cannot give you a black and white answer but as I am sure you have already discovered this is not a black and white disease.

Ultimately, the decision you make will be the one that you feel most comfortable with.

I wish you much luck and good thoughts.

Cindy

hello Tim,
I am sorry to say that this is probably never going to be crystal clear decision. Post treatment results weighed against post treatment quality of life.

I think if you asked all of these same doctors what the statistics say if the cancer returns or is unsuccesfully treated in the first go around and I think they will all be in agreement. If it doesn't work the first time, it becomes very serious.

I would ask the doctor proposing surgery how extensive the surgery will be. If it results in a smaller loss of the tongue and resultant side effects are minimal, that is one thing. If he/she is proposing significant loss of tongue then the resulting permanant side effects are substantially worse.

The best suggestion I have is to go with what ever offers the best statistics. If you talk to a surgeon you will almost always hear "knife" if you talk to a rad-onc you will hear radiation.

Frankly these stage two and three cases are very difficult because you have more options. Of course with more options comes more opportunity to look back and say to yourself "if I had only......"

In my case I was told that the surgery alone was a potential cure 50% of the time. I truely wish I could have known which side of the coin was mine before I went through radiation.

What ever you choose I wish you well.

I was hit with all treatments available. I am cancer free today. I am strong & able & have no regrets. My quality of life is excellent & I eat everything I want. I'm in the best physical condition I've been in in 20 years. It has been almost a year and a half since dx & of course in hindsight has gone by very fast. It has taken some hard work, tears, anger & fortitude to come through. I was fortunate that my ENT sent me to Virginia Mason in Seattle, a comprehensive cancer center, with a large head & neck dept. Hopefully I hit it hard enough from day one that I don't ever have to deal with a reccurence. I've seen enough people die from this disease to understand there is no easier softer treatment, no short cuts. Make sure and base your decision on the best recomendations from the best people in the industry of treating this disease successfully. No regrets!!! Erik

Tim,

My friend Rod was stage 4 with lymph node involment. The doctors he saw were a group of cancer specialists along with his ENT. They agreed on 7 weeks radiation & 3 rounds of cisplatin. They hit him hard because he was young(38) and they thought he could handle it. He did. It was a long road that wasn't easy but follow up pet scan showed no cancer. Surgery wasn't needed. He is 1 year out and is doing very well. He eats everything except bread, he struggles with dry mouth. He had to have the peg tube which was a godsend because swallowing was very difficult during tx. He is small & couldn't afford to lose much weight.Anyway talk to your doctors, find out as much as you can & hit it hard! At the time is seems impossible but it is~ and like Erik says when you look back it seems like it happened so long ago and it has only been a year for us!Time goes fast and it does get better!Good luck & God bless!I hope this helps!Maureen

Tim,

I just had to make this same decisision. Surgery or radiation. I had a 4cm. tumor on the base of my tongue and up the jawline. The surgeon, oncologist, and radiation therapist sat down with my husband and me and proposed a path of surgery first. They had several reasons for this proposal:
1. I was young and healthy enough to tolerate the surgery well.
2. They thought they could get good margins and indications were good there was no lymph node involvement.
3. Since I am relatively young (42), if I did have a recurrence, radiation would be a weapon to keep in my "arsenal", and I wouldn't have "burned that card", so to speak. (I have had previous leukoplastic patches removed from the same side of my tongue in the past...all benign.)

The surgery involved a jaw-split, partial glossectomy, neck dissection, tracheostomy, etc... so I really discussed radiation. Avoiding this surgery was very appealing. The radiation therapist told me he would recommend surgery in my case since they thought they could get it all without any follow up radiation. He said it can be possible to irradiate an area a second time, but it is much more difficult. He also said it is much more difficult for surgeons to operate on irradiated tissues.

Anyway, after much discussion, I opted for the surgery and am currently home recovering. It definitely wasn't fun, but I believe it was the best choice for my situation.

Good luck and I hope this helps!

Jennifer

Hoping your recovery goes well Jennifer!!! We have to make decisions that are so HUGE.
Hoping your pathlogy reports come back clean. Sounds like you are doing well. Thats good news. Your right about that surgery being no walk in the park but you will soon feel better.

Best Wishes, danny boy

Tim,

Get a third and fourth opinion if you can. The path isn't always clear.

Medicine (especially HNC) is very fragmented in this country.

My attitude was/is go for the gusto! In most cases you have one chance to get rid of this crap. Take it. Don't fool around a little here and "lets wait and see". That's bullshit.

If you are healthy and willing, do both. Make sure you get the best treatment at a comprehensive cancer care center.

I chose the University Of Chicago (90%-93% success rate) only after I talked with Sloan, Mayo, Loyola, Beth Israel, MD Anderson, and Northwestern. It was somewhat close to my home (hour or two depending on traffic) yes, but I would have gladly gone elsewhere had the odds been even marginally (.5%) better.

Make sure you ask them (U of Minn) how many HNC patients they see a month/year? Are they a CCC?
I notice at their web site there is no hot link to head and neck cancer on the "Oncology Services" page. This concerns me.

Also, it looks like they have a Gamma Knife witch is good. But it doesn't say anything about IMRT radiation. Do they do it? Results have shown this to be superior technology for many reasons. Organ preservation, post treatment recovery to name a few.
You owe it to yourself and your family.

One more thing now that I have sufficiantly freaked you out. What does "Comes highly recomended" mean? Recomended by who? Did that person have HNC or an ingrown toenail? Also, most forms of skin cancer dont count and breast cancer is a completlely different animal. I have found that that staement has many meanings but only one is important.

My cancer team saw/see's 6-10 new cases a week. As does the other teams at the places earlier mentioned. Please dont fall prey to the non CCC hospitals. Believe me when I tell you this is hard enough (sometimes impossible) to get rid of.
Your own piece of mind will help with the healing process as well. If in your mind you know you chose the best. Then the rest is easy, right or wrong.

Let me know if there is anything I can do to help really. Call me if you want. Here is my number (847)456-4119.

FIGHT FIGHT FIGHT!

Robert

The best treatment is a must.

Thanks everyone for taking the time to respond. It really has been helpful to ask questions and read about those that have come before me - it's a great source of comfort.

I've decided to go with the Chemo-rad and follow it with surgery, if necessary. In my case, since the cancer has made it to my lymph nodes, the chemo-radiation is inevitable, even if I have surgery first. Also, there's no data that I'm aware of that says the chances are better with surgery first. Actually, I'm told the latest study done 4-5 years ago using national data from the VA show that there is no difference in outcome between surgery or chemo-rad tx.

Jennifer: I wish you the best possible recovery from your surgery.

Robert:
1) "Highly recommended" came from ENTs, Radiology Oncologists, and Oncologists. I'm sorry if I gave you the impression that I was unable to filter the source of my recommendations. But come on, you think I'm listening to someone with an ingrown toenail?

2) The guy at the UofM is an ENT specialist who sees almost nothing but HNC.

3) I'm using IMRT for my radiation tx.

4) You say the U of Chicago has a 90 - 93% success rate. With what? SCC in the tongue? tonsils? neck? What stage? How are they measuring success? I have to say that that rate is way above anything I've heard possible with tongue or neck cancer. At this point I'm not paying too much attention to the statistics because I want/need to be on the survivor side. I've tried to become as informed as possible about the treatments and chances of success given my situation. However, the general numbers that I've been told are 65% to 70% survive "neck" cancer and the odds for people with base of tongue cancer, at least at my stage, are closer to 50-50.

Please don't get caught up in the stastics. I did at first, then I spoke with Rods doctor personally by phone. I was surprised he spoke with me considering all the new privacy laws. But anyway, he said there are many things to consider when you look at statistics. Health before tx, age, lifestyle changes (i.e. smoking during tx) other health problems. Its not just black & white. Rod was 37 at the time of diagnosis, healthy otherwise and quit smoking right away so his cancer was stage 4 but that doesn't mean he can't be on the plus side of the statistics. Just stay positive & fight this! The radiation & chemo together can be tough but like I said Rod had a complete response to this treatment.Eat as much as possible now thats really the only problem he is having now...gaining his weight back. Let me know if I can be of anymore help! hugs~Maureen

Tim: If it is any comfort, my brother was advised to have chemo/rad first and surgery only if necessary. Well, there was still a tumor in a lymph node after the radiation & chemo, so he had to have the surgery anyway. So, he had the radiation & chemo in May - June 2003 and the surgery in Sept. 2003 and has been cancer free every since. He was stage IV for tongue cancer and the doctors were not optimistic at the time, but he is living his life fully, enjoying every moment he can with his two adorable granddaughters & his terrific wife. The Rad/chemo first, followed by surgery, was a good choice for him. He was seen at a comprehensive cancer center. Good luck! - Candace

Hello,

I got a G-Tube put in on Friday so I'm hoping that it will help me keep the food and water intake at a good level.

Candace: Did your brother have to have surgery on his tongue or did he have it on his neck to get at the lymph node?

Thanks,

Tim

Just touching base to see how the treatment was working out for you.

Are you happy with your decisions to persue radiation / chemo first?

Have you discussed neoadjunctive treatments with your Oncologist?

Keep us posted :-)

- Michael