Helping my mom choose whether to do treatment for high-grade invasive bladder cancer, stage 3 or 4

I was 67 when I was diagnosed with aggressive bladder cancer for the second time in my life. First I tried immunotherapy and it failed. Then it started climbing up to my kidney, and I had no time to waste, so had bladder removal. Upon final pathology, it had progressed, so I then had to do chemo. But 24 months later, I am still cancer free.

When deciding on treatment options and such, I focused on the long game. That is, the course of treatment that would give me the best chance of survival. Why? Because I was not done. I had too many things to do with my wife, our kids, and our young grandkids. It was not an easy year, but I can look back and say I am glad that I did it. Our son just got married this past March, and I was there. We just went to Grandparents Day at our First Grader grandson's school. These are things that I would have missed.

The procedures to treat your mom's cancer are pretty well known, and have pretty good results. I have a friend who was 82 when they had their bladder removed, and another who was 75. And they are able to do the things that they want to do: swim, walk, play tennis, ride bikes, etc.

Ultimately, it is her decision. But she should talk to survivors before she makes up her mind. She can do so through the BCAN.org Survivor to Survivor program, or through imermanangels.org.

Ryan - Hello, I'm late to your discussion as I just found this site today. I have the same type of BC as your mother. I'm 61 and was diagnosed in March with a large muscle invasive tumor with extensive squamous cell differentiation. I had a TURBT to remove as much as could be gotten from inside my bladder, then 4 rounds of Cisplatin/Gemcitabine chemo over the course of 3 months this past summer before we did an RC/IC and hysterectomy on September 8th. At the time of surgery they found that the cancer had metastasized to two of my pelvic lymph nodes as well. I am seeing a new doctor tomorrow and we will decide if I am a candidate for immunotherapy - Opdivo/nivolumab. I have read that some people at stage 4 are able to live years with a good response to this therapy. My personal experience is that chemo was tough and I had and will continue to live with some side effects. Keep in mind everyone's experience is different. My first suggestion is that you make sure your mother has a good oncologist - not just someone who is technically proficient but someone who has a caring manner and listens well. My former oncologist seemed dismissive of my complaints. I should have yelled louder. I learned after the fact that many people will be taken off Cisplatin and given a different chemo drug if they experience hearing loss/tinnitus - very common with this therapy. I never got this option and there is no cure for the tinnitus I now have. I have a bit of neuropathy in my toes, which hopefully will go away. I was pretty active and healthy before all of this but I feel the chemo experience has aged me several years. Some of my joints now pop and crack that never used to. I was hospitalized with pulmonary emboli at one point, a not very uncommon side effect of cancer and chemo. I also underwent two nephrostomies - tubes going in to my kidneys to drain urine prior to the cystectomy being done, for the tumor that remained in my bladder was blocking my ureters. I had to be hospitalized for sepsis twice shortly after I'd finished chemo, due to low blood counts and infection likely due to these nephrostomy tubes. I also had to be rehospitalized 3 weeks after my cystectomy for they had nicked my lung during placement of a central line at time of surgery. they neglected to follow up on this injury and ultimately my lung partially collapsed. I recount that in the nearly 7 months since first diagnosed I had 4 ER trips and 7 hospitalizations of overnight or longer. It was not the linear course I first thought I would experience - get chemo, get surgery, get on with my life. This journey is a roller coaster ride. How I got through it was just taking one day at a time and visualizing myself on the other side of this treatment. I kept reminding myself throughout chemo that this was temporary and the side effects would pass, and they mostly did. If immunotherapy will help me to live a few more good years of life, then I'd say it was worth it all. If not, well, I won't go through radiation after reading about those possible side effects, nor would I go through chemo again. The new doc explained that it was the urothelial carcinoma component that had responded to chemo, but the squamous was left, and he feels that it would be responsive to immunotherapy. We're just waiting to review the latest PET scan that I had today to see if anything else is lighting up before he recommends this course of treatment. Again, everyone's experience and drive to live is different. I'm very much a "quality of life" person vs quantity of life. Some will do everything they can to live longer. I'm going to let go, hopefully with grace, if/when immunotherapy fails. I know that all of the treatments are only to buy time, that this type of cancer is aggressive and cannot be cured. I hope I haven't said anything out of line. Bless you for helping your mother. This is a very lonely journey. I wish that my adult children were here for me more, but I think this scares them, seeing their mom go through this. Let me know if you have any questions.

Peace.

Deb

I am so sorry, may she rest in peace.