Lost

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?
Pat

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,

Christa