High grade non invasive urethial papillary bladder cancer
I was having no symptoms but went to the bathroom in September and had bright red blood. I went to the urgent care and they were treating me for a UTI. the following week i felt awful went to ER and they did a catscan found a golf ball size tumor. I had TURBT three days later and labs confirmed bladder cancer. I had six weeks of Mitomycin. The next cysto showed another tumor top of bladder which was removed and lab showed same type of cancer but not in the muscle so followed up with six more weeks of mitomycin. I have now finally met with an onocologist. After my next scope they will treat with BCG if noninvasive. If progressed they want to do a cystectomy. They arent very positive with odds to beat this thing. My question is if my bladder has to be removed whats the best option for reconstruction?
@Coachkron27 - I am happy to see that you have met with a uro-oncologist. I hope that you do have good news and that it is non invasive. I personally had my bladder out at stage one with the hope to avoid my cancer from progressing and it seems to have worked for me. I am 8 1/2 years post op and cancer free. As for diversions, should that be your best option and your choice, there are 3 diversions as you may know. I do not think that there is a "best" one, but I do believe that there may be one that best fits your lifestyle. I had RC/IC - in 2014 and that I felt was my best option. Therefore I wear a bag and change it weekly. I have never allowed it to impact my life or keep me from doing things. There are also the options of a NEO bladder and IP . They are internal versus mine which is external. You will hear from people telling you what they choose and why and that is something to consider. The most important thing is to do what works best for you. Ask questions of those who have the diversion, not those who have one and really do not know what life is life with the others. It should be entirely your decision with guidance from your medical team. Should you want a diversion that your doctors are not qualified to do, I suggest finding a surgeon who is well qualified and has done many surgeries of the diversion you would prefer. This is a lifetime decision so take the time to make it if necessary. I also would like to say that I am very fortunate to have my cancer caught early and to have a stellar medical team that helped me get to my goal of being cancer free. I hope that you do not need to make the decision regarding a diversion, but if you do, please take the time to talk to those who have them and also see what the recovery may be like and what your new life with your diversion will entail. Wishing you good news from your testing. Keep us updated and ask any questions at any time. My best to you. Linda Urbanski (moderator, Bladdercancer.net team member)
thank you for sharing your story with us. I am sorry you are here, but I think you will quickly find the amazing support of this community to be invaluable. I would echo a lot of Linda's response. Definitely ask lots of questions and do as much research as you can to connect with / interview others who have different urinary diversions. (Again, that's where this community is magical!) If I'm reading your post correctly, you have now had a total of 12 weeks of intravesical chemotherapy, correct? I am not medically trained, but that seems intense to me. My understanding is that usually BCG is given as a first-line defense, and we move into chemo as a next resort. Were you moved directly into chemo due to aggressiveness of the cancer? If that is the fact, and if a new tumor popped up even with intravesical chemotherapy, I would definitely start to research diversion options post-haste. Once your medical team makes the RC call, you want to be already educated on your options. Please let us know if we can assist you any further, and please do keep us abreast with your journey. Sending all the best, Charles (Moderator / BladderCancer.net) Hello,Charles. I’m not sure why they chose Mitomycin over BCG but they stated a shortage of the BCG. Maybe they were hoping would take care of. Now they say I can get BCG if new lesions not in muscle wall. Of course I’m hoping for the best on March 9.
@Coachron27 - I am not medically trained but know that Mitomycin is used following a TURBT at times ( i had it after both of mine) and I have heard of those who had the treatments instead of BCG either due to BCG not being available or the fact that they tried it and the side effects made it to difficult to continue. So it seems from your post that the mitocycin may not have been successful and if you are still non invasive, then BCG will be tried and if not, then on to RC. We are all praying for your best test results and will be here to support you regardless of the outcome. Wishing you the best with your test. Please keep up updated on how things go. Linda Urbanski (moderator, Bladdercancer.net team member)
@CoachKron27 - BCG has had shortages for at least a few years now. I hope that we will see a change in this soon and more will be produced. In the meantime it is good that there is an alternative such as Mitocycin available versus nothing at all. I am happy that you were able to secure that treatment and hope that you are successful. Please let us know how your test goes Sending good thoughts your way. My best Linda Urbanski (moderator, Bladdercancer.net team member)
hi. Sorry you are going through so much. Hoping for a positive results for you after your scope. I am not medically trained. There are different types of urinary diversion but note not all are available to everyone. It depends on each individual case. If this becomes the next step, your medical team will advise the available options to you to help you make an informed choice. You can get an overview of the diversion options here https://bladdercancer.net/treatment/surgery Laura, Moderator, BladderCancer.net
