Amy, Gino et al,

As most of you know, I have been a member of the same small club (no rad or chemo) in this wonderful forum for almost a year. The decisions that you both had to make were certainly not easy and through our exchanges, I know exactly where you are coming from.

I hope that you both continue to keep up your interest in the forum so that you can help others and learn from others, too.

The knowledge that I have personally gained here in the past 11 months has been invaluable. As a dentist my interests in oral cancer most certainly have increased with my experience. I know that it has made me a better diagnostician and for that I am thankful.

I am hoping that recent articles that I have written (not published yet) will help others have a better understanding about early detection, especially my colleagues.

I look forward to communications from both of you, either here in the forum or through personal messages.

Jerry

The literature that I have read and direct information from my doctors, also at a CCC, is that cancer is almost predictable in the mid 50's age group to some degree. Younger people typically have more agressive cancers that their immune system, for some unexplainable reason, can't handle it and consequently makes it much more difficult to treat. We have have seen enough younger people die here (20's & 30's, even when Dx'd with early stage cancers) for most board members to be a little skeptical (even though you are at one of the best CCC's). Please do keep us informed of your progress. I know personally how difficult radiation is and I would love to have a different set of outcomes to present as options.

One other point, none of us are doctors here, we just share our personal experiences and observations. What Amy says is true also that the very treatment to cure cancer (radiation) can also cause it.

I have yet to read an "I told you so" on this forum, but sadly I have thought it a few times in certain cases. There is really no easy way out of this and none of the options are particularly good ones - this is a life threatening disease after all with a pathetic survival rate.

I don't think anyone on this board would ever say "I told you so". Amy, perhaps you haven't been around long enough to see how genuinely giving and supportive people are when someone gets a recurrence but believe me there is no gloating over it.

I am happy for both of you that you got good expert advice that said you did not need radiation. I'm also wondering if the reason people (not just here but Gino's first oncologist)anecdotally beleive there's a relationship between youth and aggressive cancers is because they remember the young people who end up dying from cancer much more vividly--the tragedy seems so great. This alone could account for what, in my field of psychology, is called an "illusory correlation" between a young age and aggressive cancer.

Also, there's a difference betwen the advice that makes sense for a young person with advanced stage cancer and a young person with a less advanced stage (such as Amy and maybe Gino depending on how his stage is viewed). For example, someone here in responding to Amy or Gino (I forget which) brought up Heather as an example. I wasn't here when Rosie first posted about her but when I did my own search on the hazards of radiaiton when I was faced with this decision a eyar ago, I ended up finding those posts.

Contrary to what someone here said in the posts to Gino, Heather was never diagnosed with an early Stage cancer. She was stage IV. Obviously someone who is stage IV, regardless of age, will need aggressive treatment. It seemed like a lot of people here were remembering her tragic case when responding to you, Amy, but I think your case was very different.

The fact is there are no guarantees with this disease one way or another. You can treat your disease as aggressively as you can and still get a recurrence or you can avoid radiation and chemo and be OK. None of the decisions are easy and all of them are scary. I think it's most scary when you seem to be in a gray area and are getting differing opinions. I was definitely there for a while until I got more opinion that piled up on the "get radaition" side--I'm glad for both of you that for now, your additional opinions piled up on the other side.

Nelie

I just want to make clear that I never anticipated anyone to tell me "I told you so" in case of a recurrence. NOT ONCE did that even cross my mind. I appreciate all the advise everyone has given me here, and I took it very seriously. I confronted every doctor I saw with the concerns that were expressed in this forum. However, after my own doctors finally decided that radiation was not warranted, and after getting the same recommendation from what is presumably the best Cancer Center in the country--it simply doesn't seem rational to go ahead with the radiation. Am I 100 percent confident with this recommendation? No, I cannot say I am. There is always an element of uncertainty, but I think that is something one cannot completely avoid. I will just have to think positive and hope for the best.

Gino

Gino, your last post was worded perfectly and you are being very realistic about this. That realism will help you tremendously. You are not the only one on this board that is not 100% sure of our treatment...............none of us are, all of us will forever wonder if there is something more or different we could have or should have done. So, welcome to the club of uncertainty! Just don't let it dominate your thoughts.

Amy, please make sure you keep us informed on how you are doing. I hope to hear from you, say about 20 years from now, and both of us are doing fine!

I was at a cancer symposium not long ago, and had several great conversations with highly respected treating oncologists from different fields. I am always amazed at how different doctors opinions are depending on their own clinical experience, and not necessarily published reports. But when it comes to treatments, anyone at a major CCC is following established treatment protocols there, and if they intend to deviate from those, they will have to convince those in the tumor board of the need for that diversion from the standards. If MDACC chose not to radiate, I guarantee you that there is a written guideline, based on more than the doctor who saw the patient