April 27, 2018
My dad has multiple comorbidities and a significant cardiac history so far. We're told he's not a candidate for bladder removal. He may not be a candidate for immunotherapy, chemo, or radiation either. We just don't know. We don't want the treatment to harm him in a worse way than he is now. We go to Dana Farber on Wednesday for their opinion. Is palliative care the only option? How does that work? What happens if there is nothing that can be done? There must be something to help pain and suffering that may be awaiting us. Can anyone please share their experiences?
Thank you, Karen G, Devoted Daughter
May 5, 2018
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.
May 7, 2018
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
May 10, 2018
Hi Karen, I am glad to hear that you've been able to connect with a top urologist in RI and that he was able to give some more information about next steps for your dad's treatment. I hope that the doctors will be able to help your dad in the safest and best way given his other conditions. It sounds like your dad is super strong with all of these conditions and procedures he has endured.
Watching your mother suffer from Alzheimers on top if this all and treat your father poorly can certainly add to your burden as their caring and loving daughter 🙁 I can tell you are trying everything you can despite your feelings of worry and fear.
Please continue to keep in touch with us about how you are doing, either here or via email. We're here for you.
-Sarah (BladderCancer.net Team Member)
March 28, 2021
March 29, 2021
@readabook does your dad have a palliative team involved in his care? Which part of treatment is causing the most misery for him? I know from talking with others that neither is a picnic, but with some more info we may be able to help give some more specific tips with dealing with everything.
Many believe that Palliative Care is only for end-of-life situations, but that is not the case. There is a lot that they can assist with to ensure that loved ones are more comfortable during the processes of treatment, and, in some cases, nearing death. While I hope that's not the case for your dad, it would not hurt to get a team involved early.
Sending good vibes your way, ~Liz, Moderator
March 29, 2021
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.
March 29, 2021
Readabook. I hope your father is doing better and that the treatments are working. How sad that at his age he must endure the challenges of this journey. My best to you all. Linda ( moderator, Bladdercancer.net team member)
March 29, 2021