Thanks Gary... trust me, I know that you and Brian only want what's best for me, and that includes starting whatever treatment I chose ASAP!

I am going to UCSF to have my 2 wisdom teeth pulled, (since it must be under general), so I'll ask for a consult with their RO.

Last time I spoke to her (Dr Bucci?) she was very optimistic about me having a total cure, saying their 3 year cure rate was approaching 85%!

As always I appreciate the comments, direction and ideas!!!

"with surgery still being the mainstay as 1st line (old school and not in practice at the main CCC's anymore for most cases)."

Michael, this really rubbed me the worng way. As Brian pointed out, you have had the rare luixury of speaking to several docs at two of the major CCCs but do you really know enough about what is practiced at the main CCCs in all cases to make this statement? When I went fir an opinion at Dana Fraber, like you, I had already had my surgery. But they would have recommended I have surgery first if I had gone initially. They are the #4 CCC in the country.

One difference between me and you is my cancer was on the upper tongue and surgery was not likely to produce extreme problems that would have hurt my quality of life such as being unable to speak or swallow--whereas my udnerstanding is often cancers on the lower tongue or tonsils have potentially many more complications. So maybe that's why some of the other places told you they would do rad and chemo first and only use surgery after if needed.

I'm certianly no expert either, but I suspect whether surgery is considered to be the first line of attack varies based on a number of factors, even at the major CCCs, which is why the NCCN guidelines are written the way they are.

Hi Michael,
I am appalled to hear that the surgeon at Stanford did not get all the cancer. Did he give a reason? Did he tell you this was a possibility going into surgery?

Also, you said some of the doctors you saw at Anderson and Sloan said you should not have had surgery. Were these surgeons or ROs? Did they give you a reason?

I find it very interesting that they are now doing trials with Erbitux alone. Back in 2001 when I had cancer the second time, the only trail available for me was with chemo and rad. Since back then, you couldn't have any more rad., I had no alternative but surgery.

Hope your mouth isn't hurting too badly today from tooth extractions. Make your decision soon and get your treatment started ASAP, especially now that you know they didn't get it all.

Take care,
Eileen

Just a quick addition to this thread --- when we consulted at Sloan, we were specifically told that they do not do surgery first, and in fact, try to avoid it after chemo/rad except where absolutely necessary. Now this was in relation to an advanced HNC -- I assume that someone presenting with a stage I or II which can be addressed by a localized surgical procedure would be handled differently. They also said Anderson did things the same way.

At Hopkins, we got the very strong impression that surgery first is only favored by some of the surgeons (which would be expected) and then not for cancers involving the base of tongue or areas where there would be serious QOL complications. Our med onc said that surgery is "controversial" within the HNC group because of these QOL issues.

It does appear that approaches are evolving and probably when some of the new, more targeted drugs hit the streets they will change even more. This follows the pattern of other cancer treatments, e.g. breast cancer...

Gail Mackiernan

Nelie:

I can't speak about "all cases", I can only say that in my case, I was told by several ENT's, RO's and MO's that surgery would NOT have been their choice of 1st line in my case. Several also said that "surgery is not our usual first line in cases like (mine)...", and that sometimes surgery is used for "salvage", post tx.

Even the surgeon I saw yesterday at Stanford states that he thinks the surgery was not the best choice for 1st line.

But, today, I am nearly 100% functional post-surgery, so I guess I am not complaining.

There could have been serious complications, or QOL issues, but my surgeon was really good at what he does, which may be why he advocates surgery first so much...I don't know.

I do know, that the pendulum is starting to swing the other way, and the old routine of cutting first and asking questions later may be shifting too.

As you problably know from your fight with breast cancer, that not too long ago, the standard of care for breast cancer was radical mastecomy, whereas now, these are rarely performed, in favor of lumpendectomy.(sp?)

I wrestled with the paradox of surgery first for a couple of weeks, and finally decided in the interest of time to get it overwith.

I didn't want to "start all over" with some other team and waste another 2 weeks.

Now, I am glad I did on one hand since I got useful pathology information that I would have otherwise not known, and debulked the cancer from my body.

THE GOOD NEWS is!!! that the surgeon at Stanford said he thinks the remaining tissue seen by the RO's is most likely scar tissue, kerantized(sp?) tissue, etc, and not neccessarily cancerous cells. So, I am relieved by this and am hoping he is correct.

Nelie,

From what I've read in your posts, I think your tumor and mine were similar in a lot of respects, and the tumor board reviewing my case was quite definite about surgery first, then radiation if needed. While this was 16 years ago, I don't know that it would be any different today under the circumstances, and after all these years I've had no reason to second-guess that decision. In fact, I'd have to say, all things considered, that my QOL now is just about the best it has ever been.

Cathy

Truth is, medicine moves very slowly..

I don't think much changes over just 16 years.

It seems to take decades and millions to get a new drug on the market, and even then we get things like (dexfenfluramine) and Pondimin (fenfluramine), Vioxx, and Celebrex.

That's not entirely true. In the past 16 years they have invented 3D conformal, IMRT, PBT, PET (PET/CT) and MRI scanners that actually work, it was about 15 years ago when I got the first FDA clearances to market for 3D algorithms for use in CT, MRI and Ultrasound. Image fusion, R2 Imagechecker for automatically and with artificial intelligence, scanning and indicating ROI on mammograms, Brachytherapy, the Cyberknife and come up with an antiemetic that actually works (Zofran for one). Chemo cocktails. They understand a lot more about genetics, the virus link, EBV and HPV. We are on the brink on having successful monoclonal antibodies and EGFR drugs. There is no way I would have wanted cancer 16 years ago and I admire Cathy mightily for having gone through the treatment back then and surviving. As a society we are finally doing something about smoking (I favor an international ban on tobacco products) which will have a huge impact on the cancer death rate.

These are exciting times from a technological standpoint.

We have seen the death rates from breast and prostate cancer plummet dramatically. And Brians working on the H&N numbers as we speak.

Now considering that the 2 main forms of death are heart disease and cancer, when they improve the odds for one they lower the odds for the other and it continually see saws back and forth.

We have come a long way since they were sawing peoples legs off without anesthesia in unsterile, crosscontaminated conditions (1860's) and it was only a few years later that the first successful treatment of a head & neck cancer patient was performed with a radiation source at the Curie Institue in France.

Life is a terminal illness - none of us will get out of here alive, you only have this moment - savor it.

Gary,

One of the items in your long list of medical advances raised a question with me. You listed brachytherapy (which I had 16 years ago at the end of my radiation treatments, so I'm gathering I may have been on the front end of that one). I've only seen it mentioned sporadically by current/recent patients on this site, and it seems as though it may not be used routinely. Is that because it's not widely available, or because it's felt to have limited applicability? (Or is it actually used more often than I think it is?)

Cathy

I overlooked the "technologically speaking" medical advances, sorry.

Although, the basic technology (Xray) was invented in 1896 and won the first Nobel prize in physics in 1901.

I just wish that medicine advanced as quickly as our cultural passion for fighter jets and Pentium 16 computers.

And this comming from a computer geek pilot too. :-)