patient centered her2+ breast cancer research--PLEASE VOLUNTEER to donate your tumor

[Becky]

I would send mine out too. Since I am ER+ but PR-, it would be a different kind of Her2+ tumor that is not as common. I'm in and in to help if need be.

[Lolly]

I would be willing to donate samples of my original tumor, ER/PR-, HER2+++. I haven't yet requested them from the facility storing them, but as soon as the holidays are over will start that process.
As far as actual leg work, I'm not physically able to offer any at this time, but if my new regimen is effective that may change.
Anyway, count me in for the tumor registry. I know UW/Seattle took many blood samples in the course of my participation in the vaccine trial, but I believe they can't share those.
But, as someone else pointed out, one of the samples they needed was drawn at my onc's office during the course of a regular blood draw, after UW had sent the "kit" to ship it back.

Count me in.

<3 Lolly

[DEBBIE S]

Lani and others ....

I do not post a lot on the site .. but I try to read as often as I can since
I do this all from my employer's PC .... I would be willing to particpate in the study and send samples ... I have kept as many copies of reports that I can.. I am so thankful for Lani and the others who keep us so informed and truly dedicate much, much, time and energy to the site..
I will keep checking for updated info regarding this ... and again a big
thank you to all of you who invest so much time on this site...

God Bless,

Debbie

[Sheila]

I too am interested in getting my tumor and helping if needed. I would think this project would get major support here!

[hutchibk]

I have to check to see where they are stored (will do that tomorrow - my doc should know), but I have 2 tumors to donate... which might be interesting in it's own right, since my original tumor was
HER2+/ER+, and my first recurrence was HER2+/ER-.

I'm in.

[Christine MH-UK]

Despite neoadjuvant FEC my tumor was still over an inch when it was removed, but moth-eaten, so there should be plenty to share. The only complication is that four years post-diagnosis my onc signed me off (new hospital policy), so I will have to deal with such matters through the surgical team. Still, I am willing to see if I can get a bit of my sample/ blood work sent off for this project. I have had too many friends not make it and also have no idea why I have survived NED for so long.

[Julie2]

I can definitley share my medical records and blood sample but my tumor sample is very little as I had complete response with my neoadjuvant chemo.

Julie

[Barbara2]

I will share all that is necessary, too. I'm wondering what my onc would say...Once when I asked him about testing my tumor for Ki-67 he talked me out of it siting that I have had a couple of tests done on the tumor, and we don't want to use up too much of it, in case further testing has to be done at a later time.

I had a large tumor...4.5cm which is almost 2 inches, so it seems I should have plenty to spare. Only a small piece is needed, so I am not concerned.

[Cathya]

Lani;

I am not sure how to go about this but am totally prepared to offer whatever you need (tumor and/or pathology report .....I am ER+/PR+, Her2+ borderline). I live in Canada (if that makes a difference in obtaining samples?) and know a couple of other Her2+ bc patients not on the site who I am sure would also agree to support this effort. Your efforts are certainly not unappreciated .... rest and let us know exactly what you need. Happy holidays.

Cathy

[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

[Lani]

in fact most researchers prefer either a core or an already "sliced" slide

Both require tiny bits of tissue--but if you are someone who had DCIS with microinvasion or a 2mm tumor, it might not seem so insubstantial

I got my first reply from the three emails I sent:

It was nice meeting you again in San Antonio. When you have a more detailed proposal please forward it to me. I did discuss the general idea with the head of our bioinformatics and she will be glad to further discuss the proposition, once we have more details. Of course we need to make sure that if and when material will be collected, it will be via appropriate means, i.e., transferring it from one institute directly to the other, to allow high fidelity of the material.

I am waiting for a reply from the gentleman from Washington University who supplies tissues to researchers,

Not a good season to get prompt replies, but...I am thrilled that there are now 29 replies on this thread and it is only 4 days old.

[mimiflower07]

i am very excited to hear that this may be possible just wondering if being Canadian will come with different rules and protocols? I will begin to look into it from this end after holidays.
just recieved via mail a request for tissue for research being conducted here in Can but will hold off till i know more from this site.think it make more sense to have her2 tissues all together for mass research.
suzanne

[Lani]

is already involved in a service (?don't whether whether for profit or not-for-profit) which helps researchers find tissue specimens to work on

Seeing how Washington University took their right to hold onto the prostate cancer samples donated to Dr. Catalona's research when he decided to move to Northwester (not sure of the chicken vs egg of this) all the way to the Supreme Court, I am somewhat in doubt as to whether this would be an institution in the running at all. Unsure of his motivations, but here is his answer:

Good afternoon,
Sorry it took so long to get back to you. Of course, everyone wants
everything before the holiday.


As far as a Her2+ registry...
Most investigators want to compare the results on Her2+ and Her2-
When using the same biomarker, reagent, protein, etc.

When investigators request our tissue microarrays we give them the ER,
PR, and Her2 status on each case. When investigators request full
tissue sections, we cut another section for them to run the Her2 test
(if they desire this result).

So at this point, I would suggest donating the tissue to a resource so
they can use it. Of course, keep a block for yourself (well for your
doctors).

Creating a tissue resource requires a lot of time, money, government
approvals, IRB approvals, training, etc. Most resources take years
before they are actually up and running and can help investigators.

Hope this helps.

[Lani]

is already involved in a service (?don't whether whether for profit or not-for-profit) which helps researchers find tissue specimens to work on. I thought perhaps he could pass on some words of wisdom on what it takes to set up a registry or donate samples to an established institution to be utilized in their own or others research.

Seeing how Washington University took their right to hold onto the prostate cancer samples donated to Dr. Catalona's research when he decided to move to Northwester (not sure of the chicken vs egg of this) all the way to the Supreme Court, I am somewhat in doubt as to whether this would be an institution in the running at all. Unsure of his motivations, but here is his answer:

Good afternoon,
Sorry it took so long to get back to you. Of course, everyone wants
everything before the holiday.


As far as a Her2+ registry...
Most investigators want to compare the results on Her2+ and Her2-
When using the same biomarker, reagent, protein, etc.

When investigators request our tissue microarrays we give them the ER,
PR, and Her2 status on each case. When investigators request full
tissue sections, we cut another section for them to run the Her2 test
(if they desire this result).

So at this point, I would suggest donating the tissue to a resource so
they can use it. Of course, keep a block for yourself (well for your
doctors).

Creating a tissue resource requires a lot of time, money, government
approvals, IRB approvals, training, etc. Most resources take years
before they are actually up and running and can help investigators.

Hope this helps.

[Lani]

I have learned that even those who leave art collections to museums cannot be assure that they will keep the collection together and that they will not just sell the objects to another museum.

We live in a complicated world...

[Bev]

Yes it is complicated. I'm fine with paying costs if they're in 3 figure mode. I'm not very useful but can email or do pm's to members. BB

[lilyecuadorian]

I WILL SEND MINE TOO ..NO DOUBT ABOUT IT

[Barbara2]

Alaska Angel, my tumor was very similar to what you described. It had a core of about 2.6cm, but fingers that stretched out to 4.5 cm.

The report from the needle biopsy said the tumor was a grade 2; after the sugery, the report listed the tumor as a grade 3.

You brought up some interesting points. It's good to question things. I have also been told by my onc that "no one has ever asked that question before." It seems most people accept whatever they are told and don't think about the "why's" or "what if's." They simply accept whatever they are told.

I'm so glad we have people on this site that ask tough questions and are forever looking for answers to this cancer puzzle. More "heads" are always better than one when looking for answers.

[Mgarr]

Willing to send mine or anything I can do. Let me know.

Mary

ps thanks for all the time & energy you all put in

[Lani]

of Dr. Margaret Huflejt, I found a video of her talk at an AACR conference regarding TACAs

http://www.aacr.org/home/scientists/...ferences.aspx#

I think you get a sense of her abundant energy and passion for her research.
_Warning--lots of long words, but illustrations