Help my father get the best treatment for his bladder cancer
March 16, 2012 12:02 PM Subscribe
My father is in his late 60s, former smoker (20+ years, quit about 25 years ago.) was recently diagnosed with bladder cancer. Where and how to get the best treatment?
My father is in his late 60s, former smoker (20+ years, quit about 25 years ago.) was recently diagnosed with bladder cancer. He's receiving treatment at a large local hospital.
He had the initial surgery to remove tumors from the inside of the bladder; this went well although there were more tumors than anticipated. The doctors don't think the tumors had spread to the muscle lining of the bladder. The type of cancer appears to be aggressive. No cancer was detected anywhere else in his body.
He's undergoing 4 rounds of chemo. First round went well. Soon he will go back to have another procedure on his bladder, where they will inspect the bladder and remove any remaining tumors. I expect they'll revisit whether any cancer got into the muscle lining at that time.
Future treatments include BCG, possible radiation, and possible removal of all or part of the bladder.
He would like to get the best possible treatment for his bladder cancer, and also preserve as much quality of life as possible. I'm scared that he's going to be upgraded to Type 2, and with the aggressive nature of the cancer, the prognosis won't be good.
I'm told that the major bladder cancer specialty centers have better outcomes than just getting treatment at a local hospital. He'd prefer to stay local (Maryland/Washington DC area) if possible, but if there's an amazing facility somewhere else and he couldn't get the same standard of care locally, I might convince him to travel.
Mefites, I'm looking to you. Perhaps you've gone through this before or a loved one has gone through it.
Is there a specialty center you'd recommend for a second opinion on the pathology results? Surgical treatments? A particular doctor you'd recommend seeing?
If you were just starting down this road, as he is, what do you wish you knew then that you know now? Any regrets, anything you'd do differently?
My father is in his late 60s, former smoker (20+ years, quit about 25 years ago.) was recently diagnosed with bladder cancer. He's receiving treatment at a large local hospital.
He had the initial surgery to remove tumors from the inside of the bladder; this went well although there were more tumors than anticipated. The doctors don't think the tumors had spread to the muscle lining of the bladder. The type of cancer appears to be aggressive. No cancer was detected anywhere else in his body.
He's undergoing 4 rounds of chemo. First round went well. Soon he will go back to have another procedure on his bladder, where they will inspect the bladder and remove any remaining tumors. I expect they'll revisit whether any cancer got into the muscle lining at that time.
Future treatments include BCG, possible radiation, and possible removal of all or part of the bladder.
He would like to get the best possible treatment for his bladder cancer, and also preserve as much quality of life as possible. I'm scared that he's going to be upgraded to Type 2, and with the aggressive nature of the cancer, the prognosis won't be good.
I'm told that the major bladder cancer specialty centers have better outcomes than just getting treatment at a local hospital. He'd prefer to stay local (Maryland/Washington DC area) if possible, but if there's an amazing facility somewhere else and he couldn't get the same standard of care locally, I might convince him to travel.
Mefites, I'm looking to you. Perhaps you've gone through this before or a loved one has gone through it.
Is there a specialty center you'd recommend for a second opinion on the pathology results? Surgical treatments? A particular doctor you'd recommend seeing?
If you were just starting down this road, as he is, what do you wish you knew then that you know now? Any regrets, anything you'd do differently?
Well, I don't know about bladder cancer specifically, but Johns Hopkins in Baltimore is one of the best medical centers in the country.
posted by treehorn+bunny at 12:15 PM on March 16, 2012
posted by treehorn+bunny at 12:15 PM on March 16, 2012
In general, both comprehensive cancer centers* like JH and UM and your local hospital will follow the standard of care for your father's particular cancer, but oncologists are much more likely to respond quickly to changes in his disease and manage his symptoms effectively.
*CCCs are a government designation for hospitals that do research into all of the different types and treatments for cancer. Cancer Treatment Centers of America is a for-profit chain that cherry-picks their statistics to make themselves look better in commercials.
posted by Oktober at 12:19 PM on March 16, 2012
*CCCs are a government designation for hospitals that do research into all of the different types and treatments for cancer. Cancer Treatment Centers of America is a for-profit chain that cherry-picks their statistics to make themselves look better in commercials.
posted by Oktober at 12:19 PM on March 16, 2012
My dad has bladder cancer, currently in remission. He also has prostate cancer, which went undiscovered for longer than normal because of poor communication between his urologist and his regular doctor. I can't speak to your first question--my father's urologist is part of a large local hospital center and his prostate cancer has unusual features that are being managed through a specialist a couple hours away. However, I do have a few comments w/rt your second question.
1. My dad's urologist assumed his doctor was doing PSA (prostate-specific antigen) tests and his doctor figured his urologist was on top of it. They've removed his prostate now, but he still has a high PSA and they suspect micro-metastasis. It would have been nice to know sooner--perhaps metastasis could have been avoided. Lesson learned: make sure the treatment for bladder cancer doesn't overshadow normal urinary/prostate care. Your father is not a cancerous bladder; he is a person with other body parts, and his doctors should be communicating with each other about those parts.
2. When my dad had BCG the health department had to come to my parents house a couple of times because he'd tested positive for TB after treatment. It wasn't a big deal, but it was a bit surprising to have the health department arrive at the door.
3. Don't be afraid to get second opinions, do research (from reputable sources), or ask questions. My dad kind of went with the flow at first, but over time he developed his own goals for treatment based on his lifestyle and he makes sure his doctors are clear about what impacts certain treatments will have on him. He's in his 60s and he wants to make it to his 70s, but he knows himself well enough to realize that he doesn't want life at any cost--some side effects just aren't worth it to him, and a level of self-knowledge when treating serious diseases is important.
Good luck, and I hope your father's treatment goes well.
posted by xyzzy at 1:31 PM on March 16, 2012
1. My dad's urologist assumed his doctor was doing PSA (prostate-specific antigen) tests and his doctor figured his urologist was on top of it. They've removed his prostate now, but he still has a high PSA and they suspect micro-metastasis. It would have been nice to know sooner--perhaps metastasis could have been avoided. Lesson learned: make sure the treatment for bladder cancer doesn't overshadow normal urinary/prostate care. Your father is not a cancerous bladder; he is a person with other body parts, and his doctors should be communicating with each other about those parts.
2. When my dad had BCG the health department had to come to my parents house a couple of times because he'd tested positive for TB after treatment. It wasn't a big deal, but it was a bit surprising to have the health department arrive at the door.
3. Don't be afraid to get second opinions, do research (from reputable sources), or ask questions. My dad kind of went with the flow at first, but over time he developed his own goals for treatment based on his lifestyle and he makes sure his doctors are clear about what impacts certain treatments will have on him. He's in his 60s and he wants to make it to his 70s, but he knows himself well enough to realize that he doesn't want life at any cost--some side effects just aren't worth it to him, and a level of self-knowledge when treating serious diseases is important.
Good luck, and I hope your father's treatment goes well.
posted by xyzzy at 1:31 PM on March 16, 2012
Nthing Johns Hopkins. Their oncology department is one of the very best in the country.
posted by goggie at 2:18 PM on March 16, 2012
posted by goggie at 2:18 PM on March 16, 2012
This thread is closed to new comments.
(long story short, I work in cancer research, my dad had terminal pancreatic cancer, got treatment at Sloan Kettering in NYC instead of his local hospital in NJ, extended his life by two years)
posted by Oktober at 12:15 PM on March 16, 2012 [1 favorite]