[AlaskaAngel]

Barbara and everyone,

The idea of donating seems pretty simple until some of these questions come up. I was considering participating in a clinical trial that required a piece of my tumor for analysis just prior to what I knew would be 5 years from my surgery for breast cancer. So while I was waiting for the Seattle site for the clinical trial to start accepting candidates, I had my tumor blocks sent to me, to be certain I at least had them for certain. As I think maybe StephN pointed out, there are the slides of the tumor that were originally made from part of the tumor and stained and used for the diagnosis, and then there are the tumor blocks. I was given the choice of taking either one, but not both. I had the blocks sent to me. The slides are still held at the Seattle path lab. In the particular institution where my slides are maintained, they are kept for 5 years where they can be rapidly accessed and then at 5 years they are transferred to storage that takes a little longer to access, and are kept there at least another 5 years and most are kept much longer.

Tumors vary. Some, for example, might be 2 cm across at widest point, but maybe some of that is just fingers here and there sticking out... so some parts might be better for analysis than other parts. For example, I had my original core biopsy here in Alaska and that is stored at the path dept here. When it was read by the pathologist, that pathologist came up with a preliminary estimate of the characteristics of the tumor, and that estimate was that it was only grade 2 based on the portion of the tumor that was the core sample removed from the entire tumor. Then when I had my surgery in Seattle to remove the tumor, more tissue was available and.... that portion was analyzed to be.... grade 3.

So, for some of us it isn't like any part of the original tissue block is as good as any other part when it comes to being used for scientific purposes, including any future use I might have for some of it if I want to use it for analysis to use with some future targeted drug. Some parts of mine are more "valuable" to me than other parts.

So when I was considering participating in the clinical trial, I asked how much was going to be required for the trial. I was told that mere microns are sufficient. (They did tell me that no one EVER asks these questions. That doesn't stop me, or even slow me down.) I don't know about YOU, but if I have just one tumor to hang onto and it can mean the difference between being able to use a better treatment at some point or not due to lack of adequate or accurate representative piece of it, I'm going to be... downright PICKY about it. I could not get a definite answer as to how much the path lab was going to take for the trial, or even whether what they would take would leave any truly representative portion for me to use for future testing if I needed it. My guess is that when the path lab is asked to create the sample for the trial, they aim at taking the most representative part of the tumor for the portion they remove. I may even need more than one sample eventually for targeted treatment, who knows?

Some people's tumors are very small. Or even if the tumor is large, maybe most of it is fingers or even thready or scattered bits of tumor cells. So this can be a very important thing to define before simply contributing to a registry.

If anyone knows any different, I hope they will correct me. I am all for establishing a registry and donating but I do want to be sure we each have what we need for our own testing and that we each know what we are doing when donating any.

AlaskaAngel