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BCG burned bladder

10 years 8 months ago #20800 by Les
I briefly talked with my Dad. He had his appointment at Mayo in Arizona yesterday. I didn't go to the appointment so I don't know all the details yet. The doctor at Mayo went through all the records my dad brought with. He was not sure if dad needed to start the second round of six doses this past summer. He said his body has intolerance to BCG. He couldn't use BCG again. It is the doctor’s opinion he doesn't have cancer now. Based on pathology report from North Dakota. If the cancer returned he would have to use something else to fight it. The doctor removed the catheter and told him to come back in two months, give bladder time to recover. I do not think Mayo did any tests. He is getting a third opinion from his regular urologist in Arizona. We are all in shock, expecting the worst. Now we are cautiously optimistic. I am grateful to the people that posted and emailed for my Dad to get a second opinion from an outside medical facility. Had we not done so, he may have had a surgery to remove the bladder that was at this time, not needed. When I find out more I’ll post it. I asked my Dad to send me the Mayo doctor’s report and a report from the urologist, after his appointment next week.

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10 years 9 months ago - 10 years 9 months ago #20433 by Rosemary
Les,

It would be great for some of us who have to take this treatment, if you would report back to us what happened here. Was this a fluke occurance to have the bladder so burned by BCG? It certainly was never disclosed to me while taking treatments that this was a possibility.

It would relieve my mind to know if BCG is the cause of such a radical response, or if there are other issues involved.

In all my experience (even with my own severe arthritic response to BCG) and even though the treatments are not fun :blink: , I have never known of BCG to have the reputation of being a cure that is worse than the disease.

Thanks,
Ro

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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10 years 9 months ago #20411 by Gene Beane
Les,
One thing to remember is how long recovery takes, my surgery was Sept 14th,2007, the first 4 weeks are just spent trying to regain your strength and accept what has taken place. The following 4 weeks are better and you get a feeling of normalcy. I would say 6 months total before I was okay with everything. This is just my experience, I am 67, have the outside bag, recovery is a challenge, your body has to have lots of time to heal. I was fortuneate we had a beautiful fall, I could still get out and walk everyday,making recovery a little easier.
Hope things go well for your dad, Gene Beane

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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10 years 9 months ago #20410 by Cynthia
Les,

Another site that can at least let you know who specializes in urological cancers in a geographical area is provided by the American Urological Society. In the advanced search choose Oncology/Cancer.

http://www.urologyhealth.org/find_urologist/

When this site was designed by the American Bladder Cancer Society it was done with the goal of furthering informed medical consumerism in the blc community. We are not here to give you answers we are here to give you the questions to ask your medical professional so that you can make well founded decisions. Besides the forum I hope you have taken advantage of the BLC information area’s found in the main menu. There you will find invaluable information from the best non commercial sources available.

The people on the forum have been around long enough to know what can happen if blc is not treated properly. That is what makes them so passionate they have lived the stories with real people and seen their tragedies; know that their caring is what is behind it all.

Yes statistically we can show you that centers that do large volumes of RC’s have a better outcome but that does not mean that others have not had very good treatment outside of them with long term good results, if they made sure their surgeon was competent in this area. But ultimately it will be your father’s choice and his confidence in his surgeon is very important factor.

Whoever will be going to the appointments with him will want to make a list of questions. I found having my husband with me riding shotgun was very important. He took notes and made sure that the questions on the list were answered. Here are some of the questions that were on our list as we made the rounds while choosing our Uro Surgeon. I am sure the group can add to this.

1. How many of this type of diversion do you do a year?
2. Does the hospital you use have a specialized area for Urological surgical patients?
3. Do you do nerve sparing to preserve sexual function?
4. How many lymph nodes do you remove on an average?
5. Will I have access to an Ostomy nurse during recovery?
6. How long after surgery will it be before I am allowed to travel? By plane? By car for long distances?
7. In the hospital you use will it be possible for me to have a private room?
8. Does your hospital have services to help us locate temporary lodging and nursing services for us after discharge? (If going out of home area)
9. Would you be willing to confer with my local Urologist once I am discharged and return home?

If you do decide to go out of the home range for your surgery larger area’s offer the advantage or corporate apartments and visiting nurse situations can be set up during your time recuperating there. Once I made the decision to travel for my RC I talked to my local Urologist and made sure that they were ok with excepting me back following surgery and conferring with the surgeon I used.

Your father should be very proud that he has a child that cares for him as deeply as you do and being his advocate is a gift that he is lucky to receive.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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10 years 9 months ago #20409 by PeterK
Thanks Les,

Let me know when we you and dad get to Arizona. I'll try to help him as much as I can.

Peter Konomos

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10 years 9 months ago #20408 by Les
I appreciate all the feed back. I work in a business where most of what we do is email. Communication is 80% non-verbal and that is lost in email, so the side bar stuff I don't worry about or discount the information because of it.

I had sent Peter an email of thanking him for the response to where he went.I should have posted it, can't remember what I wrote. My Dad will find out today where he is going. I believe he will go to Mayo in Rochester or AZ, or possibly University of Minnesota, or the specialist Peter suggested.

The problem I see with Mayo in Rochester or U of M, he goes home and see his ur for checkups. If he gets to AZ, he will see the specialist for checkups. Living in North Dakota there are services but not like you'd get in the big city. Down side to him having it done in AZ is lack of family support. Plus side he has a place to go, his home. Down side to North Dakota is the coming weather. But he should be healed by Nov. enough to make the drive. I've checked into air flights, so if he needs to get to AZ now, he can do it. He wants to drive the 1,800 miles.

I asked Peter how to research doctors. He gave me a link to AZ web site. I found the North Dakota state medical web site. You have to request information from the state office, but both only telling you if the doctor has had issues with the board. There are web site that will take your money and give you information about doctors but a for profit web site is about money not helping people. This web site appears to share information with the intent of helping people. Although one needs to take things with a grain of salt. However if you buying a car and want to know if you'd like it, do you ask the salesman or the guy that bought the car and has driven it for a year.

I want what's best for dad but it's his decision. He will have a second opinion and a choice.

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