Give yourself a gift for Christmas

Sheila · 12-20-2006, 02:51 PM

Another point that was stressed at the SABCS was to get your tumor/tissue slides from whatever hospital did your mastectomy/lumpectomy....many hospitals only keep them 5 years at most, and with all the new science on tumor makeup and gene proliferation, they are a must to get and keep in a safe place....who knows what they will test for in the future, and without them, they can't test yours. Some hospitals will give you grief wanting them, but they are YOUR tumor samples, and you have a right to them.

Mary Anne in TX · 12-20-2006, 03:30 PM

Sheila, what do we do with them when we get them to keep them safe?

rinaina · 12-20-2006, 04:08 PM

What a great tip Sheila. I never would have thought of it. Are they good indefinitely?

Sheila · 12-21-2006, 05:18 AM

They need to be stored in a safe dry place, they are dry slides showing the tumor characteristics....I go to get mine next week so I will let you know the specifics on storage.

Mary Anne in TX · 12-21-2006, 06:05 AM

Sheila, thanks a million for this info. I'll be anxious to hear what you learn about further storing. I appreciate your help.

Margerie · 12-21-2006, 10:12 AM

Thanks Sheila, I just called my pathologists office and my slides will be ready for pick up tomorrow morning- Merry Christmas!

I should ask Santa for a microscope so I can see for myself what rocked my world.

Cheers,

Margerie

tousled1 · 12-21-2006, 11:20 AM

Sheila,

I got the phone number of the pathology lab that has my slides from my surgeon. I plan on taking care of it after the Holidays. I too think this is a great idea. With all the medical advances being made with HER2, you never know when you may need them.

StephN · 01-03-2007, 03:53 PM

Hi Ladies -
Were you all able to get your slides?
And without any hassle?
How and where are you storing them?

My main concern is that they not be felt to be compromised in any way by someone who may use them in the future.

janet/FL · 01-03-2007, 04:27 PM

Could the slides be stored in a safe deposit box? Do let us know what you all decide is best.

Margerie · 01-03-2007, 05:10 PM

FWIW I put mine in a locking fire safe in our closet. My pathologists' office said they keep slides for 10 years. They kept them for one year- I'll take it from here.

Sheila · 01-03-2007, 05:14 PM

I will let everyone know what I find out when I go to get mine next week...I have asked for the slides and tumor block....they said I may need a Dr's order to get them...I will let everyone know...my hospital does keep them 10 years before disposal.

Sheila · 01-10-2007, 12:53 PM

I went yesterday for a repeat ultasound of the "good breast", had a mammo back in Oct, then was called for an ultrasound, then had to repeat in 3 months...while waiting for the results from the radiologist, they paged my surgeon to Xray...made me very nervous! Then both came out together to tell me everything looked fine, the little spot they were concerned with had vanished.....What a sigh of relief.

But then the bad news, I went to pick up my tissue slides and tumor block, and the hospital refused to release them...they said it is a biohazard concern and against the law in Illinois to give these out...I will be anxious to see if anyone else in IL can get theres so I can go to battle with this hosptal.

Hopeful · 01-10-2007, 01:15 PM

Sheila,

It seems strange to me that they wouldn't release your slides; slides get passed around routinely for second and third opinions, in plain envelopes with bubble wrap - hardly a biohazard. I can understand more readily the regulation of the release of the block. Did they specify both?

Hopeful

StephN · 01-10-2007, 01:26 PM

Hi everyone -
The latest on my quest to get my blocks and slides is this. The lab manager called yesterday to tell me that they are drawing up a short release that I will have to sign. Maybe they have their lawyer working on it. Anyway, she said she will call when they have it ready and I can come get my tissue samples. Not a word about a "biohazard" for heaven's sake!

Sheila - you should find out from the hospital WHAT LAW it is against so you can go from there. I also made my request in writing with some details about my case and why I wanted them.
When I have a copy of the release maybe I can post it for others in case they need such a thing.
And I am very happy your test result was GOOD!

Kimberly Lewis · 01-11-2007, 06:59 AM

I have a call in to Duke about the slides. Is the main reason for having them because they will be thrown out eventually? I am assuming that is it? I will make my case for it anyway as I am doing my best to get in on a Tykerb trial. Thanks!

Sheila · 01-11-2007, 09:11 AM

Kim
Some hospitals keep them 5 years, some 10, depends on the state and the hospital...they may be needed down the road for further testing...thats why you want to keep them...I am sure in a few years they will test for things that were never tested in our original pathology reports...and it could make a difference in treatments down the road. Hope this helps

Sandy H · 01-11-2007, 11:47 AM

This is even more amazing to me. This disease we are dealing with is also biohazard!!! Wow, what do they do with the accessories they take off our bodies??? What special precautions do the staff of O.R. nurses, surgeons use while doing our surgery? This leads to so many questions! This disease never seizes to amaze me!!!! Just my two cents worth here. I am curious to see what my lab will have to tell me they may say they no longer have my slides but I would think being IBC they should have them. I will certainly, check it out as soon as I get home from Floria. hugs, Sandy

Kimberly Lewis · 01-12-2007, 07:31 AM

my slides are on their way from Duke - they said they would send them to my Onc's office and I could pick up there. They just preferred not to send directly to my home. This might be an option for anyone who runs into a problem.