Dan, I truly understand how you feel not having chemo as part of the treatment. We all want the best treatment that leads to the best result with the least side effect.Are we asking too much? If all our hopes can come true, cancer will not be so terrible. I also feel upset for a while knowing that IMRT can be a better type of treatment but I was never told by my oncologist about this option.If I had known it earlier, I could have gone for it regardless of the cost. Should I blame the doctor who saved my life? NO! You are worried that without chemo, your chance of recurrence is higher but without surgery, it is also natural for me to think that I have a high risk of getting recurrence since statistics also state that surgery is an effective treatment to Head and Neck Cancer.Compared with those who are defeated at this battle like Heather, Packer , Marcy and many more, we should feel much grateful that we are still alive. There is always hope as long as we are here.We need to face the reality and don't get trapped in something that is irreversible.Statistics are nothing but figures; attitude is everything! Dan, stop worrying!

Karen.

Dan, my team decided against chemo, too. I had tongue cancer and two cancerous lymph nodes in neck. After surgery, I had 7 weeks of radiation because of the two lymph nodes involved. My doctors told my husband chemo would not work in my situation. Try not to worry, take one day at a time.....I know, I know, much easier said than done....but I do believe the right decision was made by my doctors....Carol

Funny, when I was treated, less than two years ago and my team of doctors at M.D. Anderson decided on chemo and radiation, ( which was part of a study ) my insurance company at first tried to claim that chemo for head and neck cancer was "experimental". I actually had to fight with the insurance company to convince them to cover the cisplatin and taxotere. Eventually they relented. From what I can tell it is almost a standard protocol. I never heard of IMRT, by the way, until I found OCF. My doctors never offered it as an option.

Danny G.

I should clarify that chemo is indeed not very effective in head and neck cancer but Cisplatin is an aylkylating agent that enhances oxygenation of the tissues, thereby rendering the radiation more effective. So there is a seed of truth that chemo us not very effective, just the type of chemo designed to attack the cancer cells themselves (this, of course, subject to change). When I was told of the choice for chemo or not, the data at the time only suggested a small percentage of benefit, contrasted with the risks. I went with it because, at the time, a 6% increase in the survival rate seemed logical to me. If I had the surgery, I might have opted out the chemo as well. If I had other health issues I may have made different choices. Lot's of "what if's"... Chemo was no walk in the park.

In regards to radiation treatment choices, I have found that if a particular treatment modality is not offered within the practice, most doctors won't recommend it for one reason for another. Either lack of experience or knowledge, such as PBT or even IMRT in some cases (although that is changing rapidly). It might even be that the radiologist has an financial interest in the equipment and wants to maintain a high patient throughput. The medical profession is a profit making business after all.

Linear accelerators typically pay for themselves in 3 years and have about a 5 year lifespan -you do the math. My IMRT treatments cost over 5K for every 45 minute session (with about 15 minutes prep time, etc. -it was another $20,000 for the programming)

For this reason I consistently plead with people to find their way to a comprehensive cancer center where they can offer all possible treatment options.

I also personally feel that second opinions should be done outside of the original practice.

There are some whose lives were saved by second opinions and there were some who did everything right, had the most aggressive treatment at the best treatment centers and still died.

Ultimately it's up to God when we are called home. Stay in the "now", love one another, serve one another, treat each other with kindness, forget about the numbers. Each of us only has this moment.

PS In spite of Dan said, even though I didn't surgery and am eating quite a lot of different things now, I still have some swallowing issues and certain foods I have to be very careful with. I too am the last one to finish eating and frequently leave food behind because people get impatient with me (but not my wife fortunately). I still occasionally choke on things. At 14 months post Tx I am little surprised that some things have just not improved appreciably. If I had it to do over again I wouldn't change anything.

In balance I am grateful to be alive because without treatment I would died a long time ago. I am grateful for every day.

I should also mention, mainly for Danny's benefit, that not all persons are good candidates for IMRT. I am sure it is available at MD Anderson.

Just so everyone is clear - there are two types of chemo involved in head and neck cancers. One that augments the effects of the radiation given at the time of radiation, and the other a systemic treatment to deal with potential or actual distant mets. In all the conversations people have with their doctors this fact is frequently misunderstood. Be sure you know which type they are considering and why. Ditto reports of success rates and end results. There are many variables; location of tumor, number of nodes, differentiated or not, non-local mets, etc. etc. that make up the treatment protocol decision process. We must all be careful to consider that while each of us has had different types of treatments, or offered different choices, many of these things dictate those options. Also, as Gary mentioned, major comprehensive cancer centers frequently approach this differently that small centers, or those doctors in private practices. Lastly, data from any study of any treatment or pharmaceutical is judged to be efficious by a variety of standards. Too many to list here, but I will just mention the two most obvious, the number of individuals in the study and who conducted it (also add how long ago was it done and is the information still viable). Anyone who has read the so called published studies on shark cartilage for instance, knows that they were conducted by a flim flam entity, with doctors that no one had ever heard of, on extremely small groups of patients, at facilities that no one knew of, or were very small in foreign countries with no regulatory oversight, with subjective results.

Additionally our understanding of all this is changing at the speed of the Internet and resulting global cooperation these days. Much more so than say ten years ago, or even 5 years ago. Multiple centers of credibility, evaluating something in different countries, verify the end result and we then have tangible evidence, that I would bet my chances on. Small studies with few participating institutions, may give us preliminary results that are promising but may not change end results when looked at in larger scale. A group of 100 patients instead of 10, or over 10 years instead of 4. It is always good to do the best research you can, ask questions of your doctors if you believe that they have overlooked a possibility, and then, if satisfied with everything decide on treatments with their expertise as a major contributing factor in the process. But chemo isn' t just chemo............. and their in lies part of the confusion in all this.

When I was offered my treatment plan at M. D. Anderson, I was told that chemo would only give me a 5% edge over radiation alone. I took it as I didn't want to have to do this again. At the time, I wanted chemo to mitigate the chances of recurrence and metastasis. The ultimate result was the post-chemo/pre-rad CT scan showed that my primary (2cm BOT) had pretty much disappeared and the largest node met had shrunk to half it's size. Not that this was curative, but it was good to see my disease react to the drugs and they also told me it was a good indicator of what my response would be to radiation. It was all good. I go back for follow-up scans next week.

-Brett

I have to agree with Gary on this. Lets look at Brett Butler. I am pretty sure he just had surgurey and Rad. He is a 8 year survivor. Others however have induction Chemo and IMRT with Chemo and still have reaccurance and die.

What we are all searching for is something that is not there (not yet). This is a nasty son of a B&*^%. As long as you are reading this post however you are on the "right side of the grass" as Brian put it in his bio.

Love each other. Love your family. Hug & kiss your kids. Kiss your mom. Summer is coming. Lets all try to enjoy whatever time we have left.

I was standing in line at Walgreens the other day and a Bob Seger song came over the radio that I had not heard in twenty or so years. I just started singing and dancing in line. People were looking at me like I had three heads. But I just dont care anymore. I am going to do what I enjoy from now on. I have had a pretty good life to this point and if god call me home so be it. But every day I am here I will thank him and enjoy what he gave me.

Take it easy everybody.

Robert

Robert,

I can't believe you would give such great advice and not tell us the name of the song that got you dancing at Walgreens. I was just forming the visual but I didn't know what to hum.

You are right, the world takes on new meaning after a near-death experience and each day is a gift.

Ed

Well said, while we must be diligent about follow up, we should live as much as possible in the present moment and make as much out of each day as we can. You can spend too much time trying to find that 3% advantage, and miss the beauty of your life going on right now. Likewise you could step off the curb at the wrong moment tomorrow and cancer recurrence will be a non-issue at that point in time. Focus on the positive no matter how small a portion of your day it may be if you are in pain emotionally or physically. Dance while you can, Love unconditionally.