Gino,

I am curious about the second pathology of the lymph nodes. Was it done as a second reading of the original slides or a full pathology (and I know my limited medical terminology is hampering me here) done on a different sample of the same lymph nodes? I ask the question because my treatment was protocol for T1,N0,M0 and did not include radiation. I am not certain if a second reading (or third or fourth) would have changed my treatment plan, or if there are still pieces of me existing to retest. I know tumor registries are kept, but I don't know what might remain of an original benign result. I do know that 33 lymph nodes were removed and all came back benign.

Now I have a pop song with "pieces of me" running through my brain, probably for the rest of the day!

Sincerely,
Lisa

(edited to add the 33 lymph nodes benign)

I have been told that most pathology labs keep samples 10 years -- whether this applies to "benign" samples I don't know, but certainly samples would be available from a late December dx. However even a microscopic focus of cancer means that there is cancer, and it might be larger than "microscopic" - this could depend on how the section was made or who reads it. (There are lots of stories on the prostate cancer web sites about supposedly "clear" samples going to one of the top PC pathologists and them finding cancer.)

In the case of mets to the lymph nodes, the most common protocol for treatment is for combined chemoradiation, either as a stand-alone therapy or with pre-or post-treatment ND surgery.

Chemo does not have to be devastating -- my husband and I investigated the options and asked questions about side-effects, and his MO prescribed 7x carboplatin, which turned out to be almost a "non-issue" compared to the stress of 33 radiation sessions and (almost) daily amifostine injections. The chemo is a boost to the radiation, and consequently is usually given as a small dose (compared to dose if given as a monotherapy). Our MO recommended weekly injections rather than the other option of 3 chemo treatments given every two weeks, as the latter higher dose was more apt to result in toxic side-effects. It was a good recommendation.

Gail

Lisa,

To answer your question, this was a second reading of the original slides.

I had been told I was clear after the first pathology report. The margins were clear and all my lymph nodes were clear. I made the mistake of taking my Italian mother (she insisted on going) to see my doctor after the surgery. When the doctor told us everything was "clear"--my mother started to cry of joy and hugged the doctor (I know most parents tend to me irrational, but Italian parents, and especially mine--and ESPECIALLY my mother--win the prize). I think the doctor didn't have the heart to make clear to us that a second pathology report (of the same slides) was needed before we can celebrate.

I confronted the doctor about this later. To be fair to him, he did tell me early on that my lymph nodes were going to be thoroughly examined--beyond the standard pathology report. However, when he told us everything is "clear" the first time, I thought this was the final report. He wasn't very clear about that and a misunderstanding threw us (my parents, my wife, and myself) into an emotional roller coaster ride.

I am being treated at a CCC (affiliated with the University of Miami), where I'm also part of a study on T1 and T2 tongue cancers. I was told that the second pathology report was done precisely because I was part of this study. Basically, the samples of my lymph nodes were dissected in ten thousand different parts, different dyes were used, etc, and they eventually found microscopic cancerous cells in one node.

Lisa, I don't mean to cause you concern. However, were you treated at a CCC? If you weren't, and can get a hold of your slides, have them sent to a CCC to be checked out--just to be safe!

Gail, I was told by the radiation oncologist, who is presumably one of the best, that chemo for my case would be overkill. This is why I'm rather confused. In any case, I will see my doctor today and will post another message this evening to keep you guys updated.

Gino

P.S., About the Luigi/Gino confusion. My real name is Luigi, "Gino" is a derivative of Luigi. Sort of like the Italian version of William and "Billy," or Robert and "Bob." You guys get the picture.

Gino, I have an idea, ask your radiation oncologist to reduce the question to statistics. In otherwords 5 year survival for no radiation, with radiation and with radiation/chemo. You will probably find that because you are early stage, statistically surgery alone offers good statistics. Radiation may only improve those numbers slightly (because they are high anyway) and Chemo would not make any statistical difference at all.

With deference to both Darrell and Brian, Ultimately the statistics are out of our hands. Whose hands they are in is a matter of faith.

The good news for you is that if your faith is in statistics you should be in good shape.

As far as I know, there are no good statistics on the benefits of chemo/rad vs. rad alone for stage I and stage II. If Gino hears of any, I'd like to know them.

There seems to be some confusion as to the staging of Oral Cancer here, read them.

Glenn's correct I think. If there's cancer in a node, it isn't early stage cancer anymore.

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

Here is the page on staging in case people are having a hard time finding it. I think that it goes without saying that there is some semantic issue here. You can have a stage one lesion for instance, meaning it is under a certain dimension in size, but not be a stage one patient as adding mets to the nodes takes you out of being a stage one. So the TNM system is a little more finite, but still all this is just a mechanism for docs to talk to each other and immediately have the other doc know a great deal about the patient, and to use as a guideline, not an absolute, for developing an appropriate treatment plan.

Glenn, you are correct and my last post should have said EARLIER stage as opposed to early.

I don't intend to get into a lengthy discussion of staging (which I believe is partly art as it pertains to what statistical survival catagory each individual would be expected to fall into) Surely there must be a large statistical gap between a single node with a "microscopic speck" of cancer cells and a single palpable node that is enlarged by millions of cancer cells. It is my use of logic that arrives at this point, NOT MY LACK OF MEDICAL TRAINING.

My doctor told me something close to what Mark is describing. He told me that since the involvement of my one node was so microscopic that he didn't feel it warranted chemotherapy. He told me that there is a large difference in a node with microscopic signs and an enlarged node that is palpable. He also said the location of the node in the string of nodes is very tell tale. Mine was in the top node in the string, under my jaw.