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Readabook Posted September 2020

Not treating aggressive bladder cancer in 92 year old dad. Sigh.

Well- we went to oncologist today and he was lovely. Revealed that my dad had had two non invasive tumors removed 4 years ago (dad didn't remember) and all clear in 2017, but this was larger, aggressive and invasive tumor. Dad had ignored symptoms for a while as his heart meds were also causing bleeding so a perfect storm of stuff. No cure for this that would be safe and I respect the doc for being so honest and not pushy about challenging treatments. He could try immunotherapy infusions ( which confused the heck out of my dad. ) Would involve getting a PET scan to have a baseline ( that frightened him as he is afraid he is going to obsess about cancer everywhere.) Then monthly infusions with regular scans to make sure they are working- which there is a 30 % chance of. My dad felt very frustrated by that (and has a hard time getting around) so asked if he could do nothing. It is quite amazing to watch your dad accept this diagnosis and I am still crying. He is going to meet with oncologist again in a month, hopefully with my mom and check in. I go back and forth, but I see how weary he is of trying to stay alive for what is becoming an increasingly hard life. My lovely mom is heartbroken, but there for him.

cwillie Sep 2020
People fear the unknown as much as they fear the diagnosis, it may be helpful to all of you if you are able to sit down with the oncologist (or someone on their team) to discuss likely scenarios if treatment is pursued or not. One thing that stood out for me in Atul Gawande's book Being Mortal was that there is often a huge disconnect between what a doctor's perspective is and what the patient hears and believes. I believe that even in the author's case (a family of doctors) when more time was promised they heard years when the doctor was actually referencing months.

Midkid58 Sep 2020
PET scans are not bad. I've had 3. I actually fell asleep waiting for the dye to go through my body. They are a good test for cancer, I guess a gold standard, so to speak.

At 92, does your dad want to fight aggressively any kind of cancer? I was only 62 when dxed and told my DH that I was fine with not treating, and he was so shocked. I did it for my kids. It was awful. I would not push anyone I loved to go through this at age 92!!!

For me, the PET scan simply showed exactly where the cancerous nodes were and it was actually fascinating. We caught my cancer in the first 3 months and so it was very treatable, but I will never do chemo again. It's rough and makes you very sick.

Whatever the outcome of the PET scan, if offered chemo to deal with this--be aware that the treatment is probably worse than the cancer.

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Readabook Sep 2020
he has decided to get a PET scan as of this morning- on his own. I hope it doesn't unsettle him too much. Thank-you all.

Daughterof1930 Sep 2020
I’m so sorry for all you’re having to now wrap your head around. It’s so hard to find a way to adjust to an end stage diagnosis and to realize the parent you love is nearing the end. I did this a couple of months ago with my dad. He was so very tired of how hard life had become, treatment options were few and not lasting, and his days were miserable with the physical limitations of his condition. He’d truly had enough, often he’d tell me that he loved his family and spending time with us but “it wasn’t enough anymore” to make up for how hard life was. Difficult as it was I feel honored to have been with him, I hope you’ll find this true also. Sometimes just holding your dad’s hand, being a caring presence is all you can do and that’s okay. I hope you’ll both find peace and strength for the days ahead

BarbBrooklyn Sep 2020
I'm so glad you got clarity, both on the back story and on his prognosis.

(((((Hugs))))

cwillie Sep 2020
It is a good thing that all the cards are now on the table so there won't be any coulda, shoulda, woulda, but I'm sorry you are all facing this.

97yroldmom Sep 2020
Thanks for the update. I know it must have been hard to hear. He has handled things well to have managed alone for so long. Perhaps it was too much for one day but do make a point to go over his and moms paperwork soon so that it is all in good order and accessible when needed. He will never be in better shape to get things done than now. I’m glad you were able to be there for him.

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