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

rbush150

Hi everyone,

My mom was recently diagnosed with a very aggressive bladder cancer -- high grade, muscle-invasive urothelial carcinoma with extensive squamous differentiation, and it has spread to at least one lymph node nearby so is stage 3 or 4. She is almost 78. She is otherwise in good health except for recently having a stroke (which is how we found out about the cancer, after taking her in for care after the stroke), and she also has a large kidney stone that would require another surgery on top of the cancer treatment.

We have been trying to convince her to do treatment, because there is a significant chance of success, and she could go on to live much longer rather than the current estimate of 6 months max if no treatment.

The treatment currently proposed is an aggressive course of chemo, then surgery to remove the kidney stone laparoscopically, then a radical cystectomy with incontinent diversion, as well as removing the ovaries, uterus, etc..

Overall, treatment would involve 3 months of procedures and recovery, and my mom is understandably very concerned about the challenges of treatment. We really want her to do treatment, and have been trying to convince her that life is worth living, that we can support her through it, etc., but also want to respect her ultimate right to choose whether to do treatment or not, as long as she really understands the pros and cons of both paths (she currently doesn't want to talk about it at all, which makes it extremely difficult)

For anyone who has experience going through these treatments, or has chosen not to do treatment, or has been caring for those who chose either path, do you have any suggestions on how to approach this choice and supporting my mom through it? I've read a little about various folks' experience on here, but if you have any experiences you can share or point me towards, I'd really appreciate it. If you did treatment, are you glad you did? Anything that helped you choose to do treatment? Anything that helped you get through chemo, surgeries, etc.?

I dealt with bladder cancer myself a few years ago, but it was much less advanced and I am doing okay now, fortunately. I would love to help my mom reach the same outcome, but am having a tough time getting through to her at all right now, so would love any ideas or suggestions you can share.

Peace and love,

Ryan

rbush150

I guess no one can muster even a tiny bit of support and encouragement. Oh well, I thought this network was to support people. Best of luck with your journeys regardless. -Ryan

barehead

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.

plaine

I have a good friend that had bladder cancer. She went through chemo and hated it, although she was cancer free afterwards. Docs expected tumors would return and eventually she'd need bladder removal. She refused additional treatment and went with a holistic approach that has resulted in 3+ years cancer free with none of the side effects of chemo. Unfortunately the remedy she used isn't on the market at this time - hopefully 1 day it is.

River_Woods

https://csn.cancer.org/discussion/325642/helping-my-mom-choose-whether-to-do-treatment-for-high-grade-invasive-bladder-cancer-stage-3-or-4

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

johnu

I went through a radical cystoscopy Oct of 2020, I was stage 3.Because of them finding it so late I never had chemo or radiation treatment before or after. I have Ct scans now every 6 months but I also had numerous UTI"S . I can only say what happened to me but I would gladly share my experience with anyone.

rbush150

Thank you for sharing your experiences, Deb and Johnu, I really appreciate it. My mom passed away last week, unfortunately. It was a hugely upsetting process with her not wanting to do treatment, but we had to respect her wishes. A complete nightmare, but I was finally able to help her come home and be at peace. Blessings to everyone in their journeys, what a challenging world we live in.

River_Woods

Ryan -

I am sorry you and your mother had to go through this difficult journey. I am glad you were able to bring her home to be at peace. I wish I knew better words to comfort you. You are a good, caring son. Take care of yourself.

Deb

johnu

https://csn.cancer.org/discussion/comment/1701529#Comment_1701529

I am so sorry, may she rest in peace.

mikamouse

so sorry for your loss..just found this site, read your story, similar to mine. Its a hard road but one can overcome. In the end it is all a personal decision. May she finally rest in peace.