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Re:Newly diagnosed with CIS - Mayo Clinic or Dr.Lamm?

11 years 2 months ago #24451 by mt bk
Thanks for the helpful input. I'll make sure to keep my records in good order. My urologist told me the hospital would not release my slides directly to me (which I thought was weird). I am trying to get my ct on CD too. I have all the other paperwork from all the tests including positive fish's, just not the slides or CT itself. I want to be ready once I go to Dr. Lamm or Mayo. I've read great things about both. Just hoping for some firsthand feedback from others.

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11 years 2 months ago #24450 by mmc
Steve,

They should be able to get you those slides in a hurry. I pulled all of mine together and took them with me UCCC (University of Colorado Cancer Center) and MD Anderson. I also had a zillion different scans and I brought the CDs along with me (in addition to having them all on a flash drive).

I agree that time is of the essence, so I recommend calling to get a rush on the slides (and any scans) and driving over and picking them up. Also, your uro can probably fax all of their records.

One thing that I also did was create a detailed report chronologically indicating my entire history. First symptoms, first diagnosis, each and every test and the result. The reason I did this is that there is a lot of useless information in some of the reports and I wanted to highlight only things that were related. Also, I found some of my records had errors in them. They said I reported blurry vision in the past and I never did and also that I had angina and I never did. I didn't want incorrect information clouding up the diagnosis.

I suggest keeping all records and creating a summary for the doctors.

Good luck. If you only have CIS (that's what I had) and you can do the BCG, things should be good. Stick with it as its the best thing going for CIS.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 2 months ago #24447 by Patricia
Steve..just a note.....when i went to MSK for my second opinion i just called the hospital where i had my TURB done and told them to get them ready and when i was leaving and it was no problem...have to sign a bit of paperwork but the slides are yours. Does your insurance allow you to go out of state? I can give you some other top notch surgeons if thats an option.
Pat
Gracie.......i'm guilty of that also...i'm always going back and editing..no problem..xxxoo Pat

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11 years 2 months ago #24446 by Gracie
Pat, so sorry but I forgot to put the 't' after no. (I've got to proof read my posts!)

In other words there is no reason 'not' to get 3 or more opinions. I am very much in favor of that. No reason not to.

Best,
Gracie

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11 years 2 months ago #24440 by mt bk
My account was deleted somehow, sorry about that. My only concern is time. I cannot see either Mayo or Lamm until I get my slides back. I beleive these are two very good options, which I am very thankful for. I appreciate everyone's input.

Steve

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11 years 2 months ago #24438 by Patricia
Steve....i don't know where your post went or my reply so i'm redoing it.
Dr. Andrews at Mayo
http://www.mayoclinic.org/bio/10477403.html
Dr. Lamm
http://www.bcgoncology.com/drlamm/
When you sent your pathology out for a second opinion did you also send your slides? Dependent on the surgeons sample and the competency of the pathologist can be a big variable.
Hope this helps.........Pat.......and hope it doesn't disappear again.
And Gracie......hate to tell you but i saw 6 surgeons before i made a decision on who was going to cut into me and it was very interesting to meet them all and know exactly how they would go about performing the surgery.
Pat

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