Is palliative care the only option? How does that work?

Hi Karen,
I am so sorry your Dad and your family find yourself in this situation. It is so difficult. I lost my first husband to bladder cancer. You are at one of the best treatment centers in the country. Palliative care is not the same as hospice though many people think they are because they are often considered together. But palliative care is really solely about alleviating pain and suffering -- whether a person is in treatment or not and whether they are terminally ill or not. In bladder cancer, this often comes down to managing pain and ensuring a patient can do the things he or she wants for as long as possible. Your Dad's doctors may not suggest treatment given all of his other conditions. On the other hand, maybe there are lower toxicity treatments that might be an option. Either way, getting a palliative care team involved is a must because they really focus on managing pain and improving quality of life. Their entire focus is on that while the oncologist's focus on treating or curing the disease. I would urge you to find out about Dana Farber's palliative care team and access them regardless of your Dad's treatment options or lack thereof. The palliative care team was one that helped us the most in those difficult day. I wish you all the best and you are in my thoughts.

Dear Renata, I am so grateful for your response, thank you for lessening my terrible feeling of being oh so alone. Turns out a top Urologist Dr here in R I specializes in my dad's type of bladder cancer and he also works with a top Oncologist, so for now we stay here. During our visit with this specialized urologist he laid out this treatment plan: On May 25 he will go into the bladder and attempt to remove remaining tumor (My dad's regular urologist was afraid to remove it all because he didn't want to cut into bladder wall). Dad's regular urologist said that it's T1 possibly T2 invasive. The new bladder specialist doctor said that he won't know if it's T2 until he gets in there. He is also going to use some kind of blue light technology to check out other possible cancer cells. He told us if he can't remove it he will give some very low dose radiation that my father should be able to handle. That scares me, any radiation ,any chemotherapy surely harm my dad I think. The person we were going to see in Boston is Doctor Preston a colleague of our new specialized urologist. He welcomed us to see Dr. Preston but the doctor here actually does the same exact thing. For now we're just waiting until May 25th and then I can't even begin to think what may happen next. My dear sweet father has had so many problems cardiomyopathy, congestive heart failure ,subdural hematoma, amyloid angiopathy and stroke. He also had an eye removed due to severe glaucoma pressure and pain and had a prosthetic eye put in place. This is all been over the past 3 years. My dad is super strong and has bounced back every single time even though he is so weak he still moves forward. To make matters much worse my mom has Alzheimer's disease and her mood fluctuations are great, sometimes she's incredibly nasty to my father and sometimes she's just okay to him. Sorry if I'm rambling but I'm just trying to stay all put together. I'm in counseling but I still cry and am still terribly frightened. I'm not very tech-savvy so someone had to notify me that you answered me. Please talk to me again sincerely Karen

I am just seeing this while doing my own research for my dad. He is 93 and going thru bladder radiation and immunotherapy. He is miserable. I hope things worked out for your sweet dad and mom and that you yourself are ok. ox

no- and I was just wondering about this myself- the radiation causes much pain, frequency of urinating, not steady stream etc. He has another week to go, but I know pain will last longer- he just takes azo type pills.