Locating tumor blocks & question

[StephN]

We have had some recent discussion here on getting hold of our slides or blocks from our surgery. I have tried to search for the thread and coming up empty. Think it was buried in another topic.

If anyone has bookmarked it, please share. Thanks - it had info on a web site that gave instructions on how to store them.

Additionally, I was motivated by the postings about some hospitals discarding tissue blocks after 5 years. It is more than 5 years for me, so I mounted a search this morning. Hospital records (where the surgeries were performed) were no help, but suggested the lab. There has been a change in the lab, but the old one still exists. Turns out they are the keepers of the tissue blocks and slides. The woman said according to her computer they had three sets for me from biopsy and the surgeries.

BUT - she said that legally these tissue samples are the property of the lab. Upon my query as to how long they keep these samples, she said their protocol is TEN years. Whew! That was good news to me.

In order for me to try and take possession of these slides and blocks, I am to write a note explaining my kind of cancer, that I have had disease progression, been treated and are in a group on the forefront of new drugs and vaccines. She felt that the possible future need for further testing to qualify for a life-saving drug or trial should be reason enough to get them released.

We will see, and I will post on how this goes.

[Sandy H]

Hi Steph: Now, that you brought this up its prompts me to get on the stick and check on mine. Have been intending to do it but just kept putting it off. I don't remember where I saw the info and hopefully, someone will help us out and post it for us. hugs, Sandy

[RhondaH]

Sheila started the thread and here you go. Take care and God bless.

Rhonda

http://www.her2support.org/vbulletin/showthread.php?t=26409

[StephN]

You are the best!

[Sheila]

Steph

I just answered the other post...it took me 3 weeks to get ahold of someone in the pathology lab....I requested both slides and my tumor block....the lab tech told me I may need a Dr's order to get them released to me, but if needed I will do that. I told them they are my tumor slides, of my tumor, and my tumor block, which I paid the lab to analyze...it is like a body part...regardless where it is stored, it is still mine. Some hospitals will cooperate and some will put us through the ropes to get them, but it is worth the fight....I want posession of mine if I ever need the for testing....who knows what they will test for in the future. My hospital also keeps them 10 years, so I am lucky. This subject was brought up at the SABCS....knowledge we would have never heard if we hadn't been there!

[AlaskaAngel]

Hi All,

Thanks, Sheila for the reminder. My 5-year "anniversary" was this week so I stopped procrastinating and checked on this. My onc's office recommended I have them sent to me because they may be needed if I do the TEACH trial shortly.

Because I had my biopsy here in Alaska and my surgery in Seattle mine are in 2 places. The facility in Seattle gave me the choice of receiving either the blocks or the slides. I am working in the dark a little bit because my onc is on vacation, so I more or less flipped a coin and requested the blocks be sent to me. If it turns out the slides are needed they are still kept and accessible by request, although at 5 years they are transferred to storage at a different facility. Storage was explained to me in that they still keep blocks there from 30 years ago.

I received the blocks I requested. The box will be clearly labeled in big letters and a brief note explaining what they are and why will be attached to the box. It will be kept either in a safety deposit box or in a fire safe for the time being.

I am looking into the blocks that are here in my home town as well.

Thanks for attending the conferences, Sheila, and bringing back such helpful advice.

-AlaskaAngel