Pretty-sure I'm going to have neobladder done. 3 yr battle with cis stage 0 blad cancer . Approx 35 BCG infusions. Cis is considered the most aggressive bladder cancer. Watching your vids is informative and preparing me for the inevitable. My last cysto , 2 weeks ago showed red spot. Sept going in for blue light cysto. Good luck and god bless you.
David Marquez After 3 years of fighting it, so many BCG infusions, and probably several cystoscopies, I think you'll be relieved to get the cancer out of your body...even if it takes a cystectomy to do it. If you're on BCAN, please feel free to message me at Kyle5574.
I've viewed several of your videos and I thank you for doing them. As someone once said 'I can differ with your opinions and conclusions, but I cannot argue with your experience.' I have been diagnosed with the micropapillary variant of bladder cancer - muscle invasive - apparently aggressive. The "gold standard" treatment according to my urologist is radical cystectomy with ileal conduit. Chemo (neoadjuvant) was offered. However, the oncologist reported that it MAY improve survival rate from 1% to 4%. I chose to decline it. Why? Because I'm 80 years of age and right now feel pretty good. I know my system and how it reacts to stuff and I just KNOW that after two or more months of the stress, treatments and side effects of chemo I would be unwell to say the least... certainly not ready for major surgery which apparently can't occur for 6-8 weeks after chemo is finished (blood doesn't clot as well, or something). So that means I will have an aggressive cancer growing in my body for another half a year while I feel like crap most of that time. And for what? A 1%-4% possibility that I might live longer (and nobody can tell me for how much longer). As I said, I'm 80 - past my "best before date" already. I'd much rather spend whatever time I have left FEELING as well as I can. Thanks again for your info and views... and thanks for providing me the opportunity to state mine.
rae0521 I know you don't need my opinion, but I wanted to say that I think you've made an informed and wise decision. Chemo is taxing, both mentally and physically. And your physical and mental health are very important during surgical recovery. I probably would have made the same decision if I were in your shoes. I don't want that to dissuade others from chemotherapy though. My doctors told me I'd fare well through chemo at my age and they were right. The 3 months of treatment was worth the 5% bump in 5-year survival. I'd do it again. Remember to get back on your feet as soon as possible after the surgery!
@@bladdercancerandtreatment Thank you for your views and supportive comments. 5% of 5 years is about 90 days. The chemo protocols prior to surgery would involve the "taxing, both mentally and physically" of at least 90 days of my life. At 80 years of age I judge that to be a "wash." Since no one can predict what might befall me during those 5 years to throw a wrench into the gears, I choose to take my 90 days "up front" while I'm feeling good. I'm looking forward to getting "back on my feet ASAP." Thanks again for BCAT,
Im so scared, i have a scope of the bladder upcoming and a possible biopsy same day if the dr finds anything. Im getting put under just for the scope because medical procedures freak me out. I have blood in the urine and all the symptoms of a UTI but the uti tests all come bacck negative, only positive thing in the test is blood. Im scared and thinking positive but im almost sure i have a major issue. Oh and im a 42 year old female. How are you doing these days?
Thanks for the video: I am having the hiccups too. The anti emetic medicine I have seems to help. So does soda water. I have a tender mouth right after chemo but it’s not as bad as I expected. I lost hair and shaved my head too. I try and walk and/ or cycle on the stationary bike each day. I do have constipation from time to time, and treat it as you would in normal life. I also have tinnitus, and it really worried me at first, but I am accepting it now as part of the journey. My major symptom is fatigue. Once the chemo is over it’s time for the RC. Still haven’t decided on the neo-bladder or the conduit. Would you do the neo-bladder again?
Anthony Hulse Please tell your oncologist/NP about your tinnitus. I accepted that as a normal chemo thing, but when I told her about it, she lightened my dose a bit to avoid permanent damage. Good to at least let them know. In my circumstance, I would definitely choose the neobladder again. No question. I haven't had any problems related to that and my life is pretty much back to normal again (I need to make another video about that). I think success with it depends a lot on your surgeon, your fitness, and your discipline in voiding. I'd have a discussion with your urologist about what you should realistically expect. And the results that your surgeon typically has. One of the deciding factors for me, if I remember correctly, was that, if I chose a neobladder, and it didn't work out for me, I could have an elective surgery to switch to a conduit. Good luck to you! Keep up your exercise. I wish I had done that during chemo. And it's the best thing I did during recovery from the radical cystectomy.
@@bladdercancerandtreatment Thanks for your response: I did tell him, and his exact words were: if this was a palliative care situation I would lower or even stop the cisplatin,. but since it's not, you have a choice. Do you want to be cancer free, or not have ringing in your ears? So I said I want to be cancer free. And he agreed but did send me to an audiologist to get a baseline.
Pretty-sure I'm going to have neobladder done. 3 yr battle with cis stage 0 blad cancer . Approx 35 BCG infusions. Cis is considered the most aggressive bladder cancer. Watching your vids is informative and preparing me for the inevitable. My last cysto , 2 weeks ago showed red spot. Sept going in for blue light cysto. Good luck and god bless you.
David Marquez After 3 years of fighting it, so many BCG infusions, and probably several cystoscopies, I think you'll be relieved to get the cancer out of your body...even if it takes a cystectomy to do it. If you're on BCAN, please feel free to message me at Kyle5574.
I've viewed several of your videos and I thank you for doing them. As someone once said 'I can differ with your opinions and conclusions, but I cannot argue with your experience.' I have been diagnosed with the micropapillary variant of bladder cancer - muscle invasive - apparently aggressive. The "gold standard" treatment according to my urologist is radical cystectomy with ileal conduit. Chemo (neoadjuvant) was offered. However, the oncologist reported that it MAY improve survival rate from 1% to 4%. I chose to decline it.
Why? Because I'm 80 years of age and right now feel pretty good. I know my system and how it reacts to stuff and I just KNOW that after two or more months of the stress, treatments and side effects of chemo I would be unwell to say the least... certainly not ready for major surgery which apparently can't occur for 6-8 weeks after chemo is finished (blood doesn't clot as well, or something). So that means I will have an aggressive cancer growing in my body for another half a year while I feel like crap most of that time. And for what? A 1%-4% possibility that I might live longer (and nobody can tell me for how much longer). As I said, I'm 80 - past my "best before date" already. I'd much rather spend whatever time I have left FEELING as well as I can.
Thanks again for your info and views... and thanks for providing me the opportunity to state mine.
rae0521 I know you don't need my opinion, but I wanted to say that I think you've made an informed and wise decision. Chemo is taxing, both mentally and physically. And your physical and mental health are very important during surgical recovery. I probably would have made the same decision if I were in your shoes.
I don't want that to dissuade others from chemotherapy though. My doctors told me I'd fare well through chemo at my age and they were right. The 3 months of treatment was worth the 5% bump in 5-year survival. I'd do it again.
Remember to get back on your feet as soon as possible after the surgery!
@@bladdercancerandtreatment
Thank you for your views and supportive comments. 5% of 5 years is about 90 days. The chemo protocols prior to surgery would involve the "taxing, both mentally and physically" of at least 90 days of my life. At 80 years of age I judge that to be a "wash." Since no one can predict what might befall me during those 5 years to throw a wrench into the gears, I choose to take my 90 days "up front" while I'm feeling good. I'm looking forward to getting "back on my feet ASAP." Thanks again for BCAT,
Im so scared, i have a scope of the bladder upcoming and a possible biopsy same day if the dr finds anything. Im getting put under just for the scope because medical procedures freak me out. I have blood in the urine and all the symptoms of a UTI but the uti tests all come bacck negative, only positive thing in the test is blood. Im scared and thinking positive but im almost sure i have a major issue. Oh and im a 42 year old female.
How are you doing these days?
What kind of chemo did you have was it in a vain or chaherter?
@MikeP-p9h 4 cycles of dose-dense MVAC. I had a port in my chest.
Thank you for all of your info God bless you I have my first chemo tomorrow but it is through a catheter @bladdercancerandtreatment
Thanks for the video:
I am having the hiccups too. The anti emetic medicine I have seems to help. So does soda water.
I have a tender mouth right after chemo but it’s not as bad as I expected.
I lost hair and shaved my head too.
I try and walk and/ or cycle on the stationary bike each day.
I do have constipation from time to time, and treat it as you would in normal life.
I also have tinnitus, and it really worried me at first, but I am accepting it now as part of the journey.
My major symptom is fatigue.
Once the chemo is over it’s time for the RC. Still haven’t decided on the neo-bladder or the conduit. Would you do the neo-bladder again?
Anthony Hulse Please tell your oncologist/NP about your tinnitus. I accepted that as a normal chemo thing, but when I told her about it, she lightened my dose a bit to avoid permanent damage. Good to at least let them know.
In my circumstance, I would definitely choose the neobladder again. No question. I haven't had any problems related to that and my life is pretty much back to normal again (I need to make another video about that). I think success with it depends a lot on your surgeon, your fitness, and your discipline in voiding. I'd have a discussion with your urologist about what you should realistically expect.
And the results that your surgeon typically has.
One of the deciding factors for me, if I remember correctly, was that, if I chose a neobladder, and it didn't work out for me, I could have an elective surgery to switch to a conduit.
Good luck to you! Keep up your exercise. I wish I had done that during chemo. And it's the best thing I did during recovery from the radical cystectomy.
@@bladdercancerandtreatment Thanks for your response: I did tell him, and his exact words were: if this was a palliative care situation I would lower or even stop the cisplatin,. but since it's not, you have a choice. Do you want to be cancer free, or not have ringing in your ears? So I said I want to be cancer free. And he agreed but did send me to an audiologist to get a baseline.