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BCG sessions and other fun things to do in your spare time

8 years 5 months ago #32894 by Patricia
Hi Wade...almost missed you. You should make a post of your own in the non invasive section. By the way there are some excellent uro/surgeons at U. of Michigan if thats where you are going??
Always a great idea to get second opinion on pathology. I don't know if you saw the article i posted in "Articles of Interest" but one main medical center found a 72% error in staging...it wasn't clear if they made the mistakes or if these were referred patients......but thats waaaaaaaaaaay too high.
pat

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8 years 5 months ago #32892 by GKLINE
I am sorry I haven't been on the site as much as I should. This is a very good discussion of the very feelings I have had throughout the cancer battle.

Jim, I know exactly how you feel about this snivveling smarmy little cell that burrows through your system and proceeds to drive a sane person crazy. I wonder where and if the little bastard will play his tune again. But this group allows me to cast off such worries and keep my focus on the living. I am never quite sure why the people I have never met, can make me feel so close.

Now Wade has came in and found some help here. Welcome to the site! Sorry you had to come. The collection of knowledge here is amazing. I only wish I had found it sooner. But after having gone through the Radical Cystectomy and THEN finding the site, I realized that I was on the right path all along. It sure was nice to find out that was true.

I know from their long posts that Mike and Pat have given you great advice. I am amazed they can throw it out so effortlessly. They have the Right Stuff.

So, it is now July 6th. Oakie, we need some feedback from your Dr visits. We all like a little good news, or even a little progressive news. We're on your side, so keep us in the loop. We want to see you through this.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 5 months ago #32857 by wadevb1
I am glad I found this board. I feel comforted reading these replies authored by intelligent men and women. Last month I underwent my second TURB within a year and completed my second BCG instillation a few hours ago. I too was in shock when my uro informed me I had a tumor. I am 42, don't drink or smoke. I am very active and didn't think I fit the "profile."

I think I will follow the advice given to okie. I never considered sending my slides to another lab for a second examination. I have some direct ties in the medical field and my uro has excellent standing but it is reassuring now knowing the names of the leading experts in this field.

Wade
Michigan

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8 years 5 months ago #32714 by Patricia
Okie......noone needs be involved but you. You call the hospital where you had your TURB and ask for the pathology report and the slides if you are going to hand deliver...or if you want them sent they will send them. You just need to sign for them. Uro doesn't even need to be involved. If you had any blood work or CT scans done they will also have a copy of that information to sign for. They can pull this up pretty quickly. Just need a couple of days to prepare the slides for packing.(Hopefully they'll refer you to the right departments. You'll be talking to Radiation, Pathology and wherever you had the blood work done) As for your hernia repair..get a copy of that report from the doctor that did the repair or ask the hospital for the discharge summary.
The hospital where you are getting your second opinion will want to do their own testing of what they think is necessary. When they will do it i do not know. Every hospital is different but you don't have to do anything further before your second opinion. Like i said MSK made a decision on the spot with me for a re-turb 2 days later. One person i know who just went there for a second opinion talked at great length to the surgeon and they went home because pathology had not read the reports yet. Now they are scheduled to go back on July 7th for pretesting and a re-turb.
So figure out where you want to go and get as much information as you can as to their protocol. But as far as getting copies of all your previous surgeries they're all on disc and readily available. Just make sure you have the right dates on the surgeries and they should be able to locate them.
pat

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8 years 5 months ago #32712 by mmc
Jim,

One thing that is just a good idea in general is to sit down and do up a list of all the surgeries you've ever had, any alergies or strange reactions to any medications, any medications that you take regularly as well as any vitamins or other suppliments. Everybody always wants to know all of those things and if you have it all typed up and printed out, it makes it easier to fill out their forms.

Other than listing the hernia surgery and TURP, I don't think you'd need any more record than that with regard to those.

Your uro will have a copy of the reports from the pathologist but you need to get the actual slides.

If you don't know how to get in touch with the pathologist to get the slides, your urologist will know and can tell you.

An annual physical is always a good idea but it's not a requirement for getting the second opinion. If there are other medical conditions that you are concerned about however, you should probably try to get a physical. If for nothing else, to put your mind at ease. I'm guessing there is a slight concern there which is why you asked the question.

From your urologist, you also want a CD with any scans or xrays that they had done. If the urologist doesn't have them they will tell you how to get them. Usually, you just call the hospital where you had the xrays and/or scans done and tell them you need a CD with everything on it and you just go pick it up. You have to sign a form that says you give your permission for you to see the reports (HIPPA requirement).

I don't think you're making this more difficult. I think you are a bit nervous and want to make sure you are doing everything right and covering all the bases. That's just smart. How do you know if you need these things or not if you don't ask?

We don't mind the questions at all.

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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8 years 5 months ago #32711 by Okie
Pat,
Thanks for all the information, now I have even more questions....
Do I have to contact the pathologist that has examined the biopsies from my first two cystos, or will my uro take care of that? What about all of the other lab work? I haven't had a complete physical in about five years. Should I get a complete examination prior to requesting a second opinion? Or is it better to let the second opinion folks do their own if they deem it necessary? What other preparations, if any, should I be taking care of before the scheduled appointment? How many days should I be planning to be off to get this done?

I have had a couple of operations in the last year and a half: in July of 2008, a very large hernia repair in my groin area, and a TURP in August of 2009. I can get all of the medical records from those two events if they would be necessary. Am I making this more difficult than necessary?

If anyone else has comments or opinions, please feel free to join right in, I only addressed this to Pat because we have been conversing since my first post (well mostly Pat, Mike and Sarah). But, the more viewpoints, the better.

Thanks,
Jim

Jim

TURB 10 March 2010 dx small papillary TCC, CIS non-invasive
2nd TURB 7 April 2010
1st 6 BCG treatments completed
cysto 6 July 2010 - "No Recurrent Cancer"
Start 2nd round of 6 BCG 23 July 10

Jim

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