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9 years 1 month ago #39350 by Patricia
Where are you located? Some of the VA hospitals have the advantage of being close in access to top bladder cancer experts and then others they are the pits and are terrible. Does your father not have Medicare?

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9 years 1 month ago #39348 by sara.anne
Wow...you and your family have been on a roller coaster with this!
Have a couple of questions for you...Usually the BCG regimen is once a week for 6 weeks, and then every three months a maintenance series of one a week for three weeks...continuing for quite a while. How many BCG instillations did your father have?

Think there is a little confusion on some of the terminology...not surprising! He has had several cystoscopies...not cystectomies, which is removal of the bladder. And, from your description, he has had at least one TURB (transurethral resection of the bladder under general anesthesia) where actual biopsies were taken?

The pathology report from the samples taken during the TURB were high grade? Do you have any more information from the pathology report? You should have a copy of this.

The usual procedure, ESPECIALLY WHEN NOT ENOUGH SAMPLE WAS AVAILABLE TO DETERMINE IT IT WAS MUSCLE INVASIVE, is to do a second TURB to determine this. It seems to me that this is one of the most important issues to be determined. IF it were to be muscle invasive, cystectomy (removal of the bladder) would be required ASAP.

How old is your father? Is he able to handle the daily chores of living? While a cystectomy is not a walk in the park, most people who have them adapt well and live a full, CANCER FREE life. There are three primary types of diversions and his life conditions would help to determine which he might choose. I can understand his reluctance to consider it, but it can be the difference between many years of good life and the alternative.

Your dad is fortunate to have someone with your experience on his side. If there is any way that the VA can refer him for a consultation with a high volume urological (bladder cancer, kidney cancer) center, it would be a GOOD IDEA.

Hope I have answered a few of your questions....Am sure that others on this forum will chime in.

Best of luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 1 month ago #39346 by christaboone
You would think that I could make my way through this tunnel of information since I am a nurse, but it is not that easy. I don't know where to post because my dad seems to fit so many categories here. I am posting here, if there is another place to post, please just let me know.

My dad was diagnosed with invasive, high grade urothelial cancer of the kidney in June of last year. It had already invaded the muscle and fat beyond the kidney when they had removed it. He endured 6 months of chemotherapy, his last day being 11/29, my moms birthday. He has not fully recovered and we had hoped mainly due to the chemo lingering effect.

In April he had a cystectomy that revealed 3 moderate size non-invasive papillary tumors that were removed with BCG administered. In late July he had a second cystectomy which revealed 3 tumors and they stopped and scheduled a follow up cystectomy with full anesthesia a few weeks later. At that time they did the full excision - but found 4 (either missed an additional or really found a new one). They administered BCG again. Yesterday we heard that 3 of the 4 are high grade but could not determine if they were invasive enough because they did not get enough of a sample.

Originally we were told that we would have a good idea of his prognosis by how fast the tumors recurred and at what rate, but more than likely he fit the 20% in 5 years survival category. The fact is that he has had aggressive tumor growth despite Cisplatin/Gemzar and several rounds of BCG.

I need to know what to ask from here. The doctor mentioned that he would not recommend cystectomy as the quality of his life would be too affected. Honestly, my dad probably won't opt for it either. He may go for more chemo and BCG treatments but I would just like some guidance. All of his treatments are going through the VA and he has no medical insurance.

He is again scheduled in 2 weeks for another cystectomy to determine how invasive these tumors are. He also has a CT scan scheduled for tomorrow. This is the first since his original diagnosis. Obviously the fact that he has not regained fully to himself and he keeps complaining of "bloating" concerns me as a nurse and a daughter. I want to help him but I get very little interaction with the doctor and I want to make sure that I am doing everything I can and need to at this point.

This is obviously very difficult as it would be for anyone. I have 3 small children ages 5,5, and 6 and I want to make every memory possible if I need to.

Thanks for listening and providing any support or ideas that you can,


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