Huge decision to make regarding next treatment
Hi all. I am 71 and have been dealing with MIBC stage 3, plasmacytoid variant since July 2022.
I had 6 cycles of chemo, gemcitabine / cisplatin, that ended 12/28.
Repeat CT scan along with a recent cystoscopy (Examination Under Anestresia) showed a remarkably complete response to chemotherapy. Still, especially with the extremely aggressive plasmacytoid factor, there could be errant cancer cells floating around somewhere.
So the choice now is either RC or radiation with chemo.
I met with the radiation oncologist yesterday, and will have a video conference with the urologist / surgeon tomorrow. I am being cared for by Memorial Sloan Kettering.
The tried and true next step is surgery (which I am very scared of), but radiation is still a possibility. However, there is no data to support radiation as a successful treatment for plasmacytoid bladder cancer. Not that it couldn’t be successful, especially with my excellent chemo response, but that there is no data since the plasmacytoid variant is so rare.
My thoughts on the surgery is this: I feel really good now - no pain anywhere, and my strength is returning now that I am 5 weeks after last chemo - back to walking 4 miles a few times a week. I am generally very active - mountain hiking, bicycling, tennis, home repairs, etc. I don’t know how much I will recover from the surgery to continue these activities, or what kind of complication I might have. I suppose the urostomy is something I will get used to over time.
So why do such violence to my body, with a long recovery, when radiation might do the trick. I realize that whichever path I take, that this cancer can recur at any time with no guarantees for long term survival.
Asking for your thoughts and experiences.
Thanks, Frank.
@LeftFrank - I am sure that this is a very difficult time as you need to make a choice on which treatment is best for you. I made the decision when I was 63 to have RC/IC surgery. The difference was that I was stage 1. The decision was left entirely up to me and I chose to get rid of my bladder and the cancer versus trying other treatments. Other treatments may have worked or they may not have. I was very active then and going on 9 years later probably am more active as I lost weight during my testing etc and have kept it off. I would never push anyone to have this surgery but feel that if you do choose it, your general health and that fact that you are already walking 4 miles and doing many other things is in your favor. I am not a medical professional and would not know the possible success of either treatment with your stage etc. What I do know is that I did not have any problem adapting to wearing a bag. I returned to a desk job 27 days post surgery for a variety of reasons. I was tired for the first week but not dwelling on what I had gone through made a huge difference in my recovery. I was walking 2 miles ( 1/2 mile 4 times a day ) by the time I left the hospital on day 5. i was at pretty much 100% with in 2 months. I am someone who accepts that life is not always fair and that we sometimes have very difficult and unexpected challenges that we must overcome. I am fortunate to have a great support team and excellent doctors. My suggestion is to speak with others who have had these treatments and to also ask your doctors what the possible side effects or challenges might be with these options. Ask any and all questions because this is a big decision. I hope that whatever you choose, that it is successful. Please keep us updated on how you are doing and know that we are here to provide support and knowledge from our personal experiences. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)
- I hope that you have received more information from your medical team so that this decision does not seem overwhelming. I found that during my most challenging times when I was left to make a difficult medical decision I many times would ask my doctor " if this was your sister or mother, what would your opinion be for them regarding this decision" I found that it always resulted in them providing a definite response. I am not saying to defer to your doctor when the decision is up to you, but it is something to consider if you are still wavering on what to do. Whatever you choose, we are here to support you and cheer you on all the way. My best Linda Urbanski (moderator, Bladdercancer.net team member) 
it is not an easy decision to make. What I can say is the surgery recovery takes time but you can resume a very normal life afterwards. If you want to find out more about an RC to help with your decision making, this might help. https://bladdercancer.net/living-with-a-urinary-diversion please feel free to ask any questions. I had my RC, 5 years ago. Laura, Moderator, BladderCancer.net - Wishing you well as you decide which treatment option is best for you. Which ever you choose, may you be confident of that decision and may it be successful for you. My best Linda Urbanski ( moderator, Bladdercancer.net team member)
