Recurrence and Bladder Surgery Removal
What events in your bladder cancer recurrence caused you to have a bladder removal?
@CommunityMember577 - I was diagnosed with high grade stage 1 BC in August 2014 after many months of being treated for UTI's that I may not have had at all. I had a great deal going on at the time - too much to mention to be honest. I had the option of BCG but due to most of my urethra being removed during my 2nd TURBT as cancer cells were found near the bladder, BCG may have been a bit of a challenge as I was pretty much incontinent. My uro/oncologist said that we could try it and see if it worked. I personally did not like the possibility of it not working so I chose what I hoped would rid me of cancer once and for all. I had robotic RC/IC 9/30/14. I was back working a month later and honestly have never looked back. While I certainly know that this is not the decision for everyone, it was for me. I am 8.5 years cancer free and lead a very full and active life at the young age of 72. I think if anyone is considering this surgery and/or it has been highly recommended by that patients medical team. please talk to or even meet with those who have had RC. In my humble opinion it makes a big difference to see someone and/or speak with someone who knows exactly what it is like. I am always willing to do that is if will help someone out as I know it is not an easy decision. Linda Urbanski (moderator, Bladdercancer.net team member)
@CommunityMember577 - I had the IC or bag as we refer to it. I was fortunate that I did not have any problem adjusting to it and as I had access to an ostomy nurse who knew her stuff so to speak, I was leak free pretty soon. I think that every one needs to choose the diversion that works for them. I am happy with mine but I also believe that most people are pleased with what they choose. I am happy to answer any questions that you have. Linda Urbanski ( moderator, Bladdercancer.net team member)
@CommunityMember577 - Choosing a diversion can be a big decision. First it needs to be what works for someone and their lifestyle. A surgeon who is very experienced with this diversion is imperative. I have never been bothered by wearing a bag. People who do not know I have one would not know. I am attaching an article, not to sway you in any way but to try to dispel some of the myths ( in my opinion) of wearing a bag. Should a diversion be the best treatment for you moving forward, please speak with others who have had them as that does help out with the choice. My best. Linda Urbanski ( moderator, Bladdercancer.net team member) https://bladdercancer.net/living/ileal-conduit-myths
My decision was not based on a recurrence, but on a 2nd opinion. My first doctor, a urologist, performed my 1str TURBT. Pathology report indicated High Grade cancer that invaded the bladder lining but not the muscle. He set up BCG treatments. I had one.
My daughter recommended a second opinion at UVA Urologic Oncology. My surgeon there explained that whenever they get a High Grade diagnosis they perform a second TURBT to ensure the cancer has not invaded the muscle. He kind of scared me by saying that with the High Grade if I wanted him to remove my bladder today he would schedule it, whew. I thought let's wait til after the TURBT.
Well, pathology came back cancer had invaded the muscle. I had been doing all kinds of research since talking to him and prior to pathology coming back. He said we could do chemo first. I said no, let's get the cancer out before it has a chance to go anywhere else.
Bladder is gone, 8 weeks tomorrow. Pathology says I'm no cancer free. Life is very quickly returning to normal. I walk a lot. I ride a spin bike. I lift light weights and do light abdominal exercises. I am very comfortable with the bag, I chose an ileal conduit. I've had one leak, at home at night in bed. Other than that there has not been any issues. We go out to dinner, listen to music, drink with friends, go to movies. All like I don't have a bag. Some of my friends know. If you don't know I don't think you can tell.@Frederick - I agree that there is always a concern with cancer metastasizing so that is the value of continuing to be vigilant with testing. I had a great medical team and trusted them completely. Linda Urbanski (moderator, bladdercancer.net team member)
absolutely. I am not medically trained but I know recurrence or spread is often the case with bladder cancer. In my case, much more then just that bladder was removed and it included the removal of 40 lymph nodes. I reached the 5 year mark in November and was signed off from my medical team. My total pelvic exenteration surgery was massively invasive but done as a cure not a treatment of the cancer. My case is unique but agree with Linda, that continued surveillance for as long as is recommended is key for bladder cancer. Laura, Moderator, BladderCancer.net
how are you today? my bladder cancer was advanced, muscle invasive, stage 4 squamous cell carcinoma at diagnosis. The only option for me was bladder removal as part of a total pelvic exenteration operation. This is a more unusual case and it is more often caught earlier when other treatment options may be an option. This explains more about different treatment options: https://bladdercancer.net/treatment Laura, Moderator, BladderCancer.net
