Hey Kyle....Just wanted to thank you for sharing your harrowing trip! I don't think you will ever know how many people you have helped, how much angst you have removed for them, as fear of the unknown is always the worst! I seem to be moving right along the path you have so eloquently laid out. I'm at the, "Meet the Oncologist point fo,r I guess, the recommended Adjuvant chemo course followed by Radical Cystectomy down the road "gold standard" for T2 muscle invasive! I think I can speak for all the folks on here that we all appreciate the effort you have made in this series and I'm sure we'd all love to see a bladder cancer - 9 sequel...if you're willing! Thanks for lighting the way.......big fan! Mike
My bro in law 64 is facing this right now i m going to show him your videos and give him hope because i think he's thinking it's the end . But you will give him some hope .😊
Just read your last comment and I'm so glad you are doing well. I watched your videos and they are very informative. Thank you for sharing. Best of luck, live and peace.
Thank you for taking the time and effort to help others! I’m just starting this journey and your videos have given me and others helpful insight as to what we may face. Thanks again and God bless!
Greeting Kyle and thanks for the reply to my comment. Great to hear, it's becoming a distant memory/nightmare! Nice to know there is light at the end of the tunnel and it's not a oncoming train! I'm still marching along to the beat of your videos, revisiting them, again and again as I progress down the path you have so generously mapped out! I'm in week 7 of my 16 week course, biggest problem I'm encountering is lack of appetite and constipation issues, despite the lack of food intake! Working through it though with advice from the nutritionist and chemo nursing staff! Just glad to hear your doing well and will always be thankful to have you and your videos acting as my Sherpa as I wind on down the road! Thanks again, Mike
My son went through Testicular cancer op and Chemo treatment most of last year and level pegged day by day with Furious Pete going through his experience. Unknown to Pete, he was a great inspiration for my son as I am sure you sharing your painful experience with others will also inspire and encourage many others. Cancer is a frightening time for not only the sufferer but also for loved ones. Thankyou for sharing and I wish you well for a long and happy life :) x
Im sitting in hospital 3 days since ileal neobladder surgery. I wanted to thank Kyle for the videos including 5 year update. Professional job that has helped me on every step. Dr's love the pants you recommended easy to flush bladder without exposing ones self. Not that that's a concern after all this, lol. I fought it for 7 years with 9 turbts and many many bcg treatments. When I processed to t1 I went with the illeal neobladder (Dr Patel at OU medical center). Truly thanks Kyle for the invaluable help getting through this.
@marksisson7595 I’m so happy to hear that you’ve had the operation and you’re on the path back to a new normal after fighting for so long! I was dreading the operation, and worried about the impact it would have on my life, but I woke up with a sense of relief that the cancer was out of my body and, most importantly, that my life was back in my hands. After battling this for so long (7 years!), I hope you feel that too. The recovery is rough, and it takes determination to get through it, but I think it will be easier than the physical and mental toll of what you went through trying to fight it all those years. Thank you for commenting from your hospital room. I wish you a thorough recovery (doesn’t have to be fast, doesn’t have to be easy, but we want it to be thorough!). Please hit the call button, get a nurse in there, get up out of bed, and take a celebratory walk!
Btw, I got a chuckle out of your comment about avoiding exposing oneself. As if we have a modicum of modesty left. A little bladder cancer humor there.
As a future urologist, this ironically is the illness that worries me the most, every single urologist colleague of mine that smoked quit cigarette tobacco for this reason
Hi Kyle, can you give us a update? Thank you for all these videos they were so informative. I have stage 4 bladder cancer, they cant do surgery, but I'm taking immunotherapy. But anyway, you are an encourager. Thank you so much. God Bless you an yours...
Hello Sherry. Im sorry about your diagnosis. How you doing today? I hope you’re doing good.May I ask what symptoms you had before? Im suffering and going to see a urologist
Thank you so much. Excellent videos. Would be perfect it if you would make a last video, 4 years after, telling us how is life. Hopefully you will find the time to do it.
Thanks for sharing your story and your most intimate experiences in your journey. I have a loved one going through this and your story will be very insightful. Surely glad to here you are doing well.
Thank you for such honesty about your story. I've already had my prostate removed 5 years ago. Now passing blood and pain in bladder, getting cystostomy in 2 weeks, scared to death. My age is 67.
Had Cystoscopy last Friday things looked ok. Wednesday this week started passing blood again and pain in left side, waiting on Urologist to reply. Bladder did look good, so it's something else.
Hey Kyle, just wanted to thank you again, as I just finished week one of my Neoadjuvant chemo with Gemcitabine and Cisplatin. I just re-reviewed your bladder cancer - 6 in which you discussed your first chemo course memoirs! So helpful as I nodded like a cow in agreement to your experiences and what I am currently feeling. I expect I will use your guide all the way through, looking for pearls of wisdom and tips and trips to navigate the course! Still would like to know how you are doing with some elapsed time now after the ordeal! Thanks again and all the best! Mike
voodooutube1 I’m happy the videos are useful and happy you’re on your way. Please take the treatment one day at a time. People talk about the road to recovery, but treatment always felt like a train to me. It’s barreling down the track. I’m not driving; I’m just along for the ride. There are stops along the way, but all I need to do is be there and make sure I’m ready. I’m doing very well. I haven’t made a follow-up video because I honestly don’t think about cancer as much as I used to. I’ve settled into my new normal-and honestly it’s not that much different from my old normal. I should make that last video though. I will at some point. Keep riding that train.
Hi, Very powerfull videos! My father in law was just diagnosed with high grade stage 3 bladder cancer that had spread to one lymph node. i watched all your videos and I feel more scared. I'm not sure what advice to give him. I'm very curious to know how you're doing, now. It would help a lot to have an other video, if that is ok with you. I really hope you are completely free of cancer. That would also help us a lot.
miassa lyess I'm very happy to say that I've been NED for the year and a half since my cystectomy. I keep thinking I should make another video about life with a neobladder, but I haven't gotten around to it yet. The truth is, I don't think about cancer much anymore and the neobladder has become my new-normal, so much so that filming that last video isn't at the front of my mind. And really, that's maybe the best testimony I can give--I don't have to think about cancer anymore. The videos maybe don't set a very positive tone. I shot them during treatment. My mantra throughout the ordeal was, "it is what it is". Admittedly not hope inspiring. And really that's still kind of the way I feel. But, now that I'm on the other side, I am LIVING proof that there is reason for hope. I'm still here. I've got my life back. I'm back to normal. I hope your father in law can say the same soon.
Kyle, If you do check this. Is there a way to contact you privately? I just got hit with the exact same as you. I’m 47 and would appreciate advice. Thank you
In the hospital, immediately after surgery, my throat was a little sore from intubation. I wasn’t allowed any fluids for a little while, and wasn’t allowed any food for longer. Even after I could eat solid food, I took it slow and didn’t eat much for a few days. After I got home, I didn’t have any specific issues with swallowing or lack of appetite. I’m sure I ate less, just because food wasn’t my primary concern and I was not comfortable. If you’re caring for someone immediately after this surgery, maybe just offer them small healthy snacks that they can eat without trouble, where they sit, without having to get up or even sit up. I had a lot of stuff going on and eating felt like just another burden, so easy food was better for me.
very moving I had a turbt 2 weeks ago, and are awaiting results. the doctor said he had removed a 2.4cm tumour and some muscle as well. I'm expecting the worse.
MrStevenhewkins 3yrs with high grade cis now beginning gemmyto chemo into bladder. My dr is hinting about neobladder. Your video is informative and i am happy you emerged on-the other side, and happy. Im hoping my bout with cancer will not return. At 61 yrs old i dont kmow how i will tolerate any major procedures.
We are trying to create a universal group of ppl facing the same kind of this pathology (stage 2 and 3 aggressive bladder carcinoma) to provide moral support and share each other's experiences. If interested please introduce yourself in a mail and send it to geneva.narb@gmail.com We will be happy to host you. God bless
I wish i was as brave as you I will find out thursday this week if i have it or not Praying i dont I havent watched all the videos yet just the first and the last i am too afraid to watch the rest hopfully i wont need to Be strong be well thanks
Was this not stage 1? My dad had a surgery and basically he did none of this aftercare and SOME complications(bleeding,difficult to urinate sometimes) but none of the ones you had ....maybe ive missed something im confused. Maybe it was just because of the infection u got
Thank you Kyle. I was wondering about working ? It seems difficult to try and work with these schedules of appointments and surgeries. I’m scheduling for my TURB now. 🤞🏻
I took a lot of time off. I've got a desk job and I can work remote, but it was difficult for me to get any work done. During diagnosis and the initial procedures, I was able to work a good amount. During chemo, not as much. Throughout the time leading up to surgery, I was probably off more than I worked, but I did work enough part-time to stay on the payroll--at least up until surgery. I went on short-term disability for about 10 weeks for surgery and recovery, so I didn't work at all during that time (wasn't allowed to work even if I wanted to).
Mine was 1.5 centimeters and I had a patch of carcinoma in situ. We can talk here if you want! The BCAN forum on inspire.com was also helpful, but I'm not on there anymore.
@@bladdercancerandtreatment I saw all the videos you posted... so my question is. It looked like you were bleeding for a while right? Nothing really stopped the bleeding ?
Bleeding after the first TURBT? Yes, there was significant blood in my catheter for several days after the procedure. I think they expected it to stop bleeding while I was in the recovery room after the procedure because they were continuously flushing the catheter when I woke up from the procedure and waiting for the fluid to stop being pink/red, but it didn’t stop and they just sent me home. It stopped bleeding on its own after a few days, but not before clogging several times-which landed me in the emergency room at the hospital. After that, I made sure to have them teach me how to flush it myself and send me home with the equipment and saline to do it.
I want to ask 1)what about hormonal imbances ?if there was did u begun TRT ?or other hormonal fill up ?Did u removed prostate and viscral nerves also ? 2)sex drive and sex act ? 3)libido ? 4)urinating / void technique ?were u kathetire ur self as others ? 5)can u do training with a neo bladder (weights or fightisg sports )? 6)what changed in case of everyday life ? 7)how long didi it take to re arrange the emptying time ?and how u re train intstine (no mucle )to push ?was it through the abdminal mucles ? 8)my doctor tels me that i will have no tubes at all when i will leave hispital after 5-7 days . i have to decide betwweeen agressive chemo vs neoblader and i want to know pros and cons ... respectfully ,thnks for the info in advance
@CMTattoos I didn't consider hormones. I was just trying to stay alive. That said, I have not noticed any hormonal differences after losing my prostate--nothing that couldn't be attributed to just getting old (38 when diagnosed, 45 now). My prostatectomy was nerve-sparing. I still have the same sex drive and almost the same erections (maybe 90%). I no longer ejaculate, but I still have the same muscle contractions (just dry). I have never catheterized. I urinate by flexing my abdominal muscles and pushing it out. It's hard to describe, but I bet you can do it right now with your bladder if you try to force the urine out while you're urinating. I don't do any heavy weight lifting or fighting, but I don't think I would have a problem with that--especially if I urinated before (which I would). Biggest changes for everyday life is that I urinate on a schedule--every 2-4 hours during the day, every 2 hours at night (I set an alarm for every 2 hours at night to wake up and urinate, and I do that all night). Training the muscles to retain urine and expel urine took maybe a month before I was confident. I don't have any techniques to pass on, but if you're fit, and sounds like you are, then you should be fine. The muscles I use to retain urine seem to be very similar to the ones that I use to hold in a fart. Different, but very similar. Took me several months to be able to fart without peeing. I am very leery of not having tubes by the time you leave the hospital. Check the description of this video for my timeline. I had tubes for 6 weeks after the operation. Each of those tubes had a reason and purpose for being there. Why are you choosing between chemo or a cystectomy/neobladder? I had both. If you are young and fit, then I strongly recommend both. The data when I was diagnosed said that chemo raised the 5-year survival rate by 5%. That is worth it. No doubt. If for some reason I had to choose, I would have 100% chose cystectomy. In my case, chemo was only meant to raise my survival rate by destroying any cancer that may have been elsewhere in my body, just in case. It is the cystectomy that removed the cancer and I believe it is the cysectomy that saved my life.
@@bladdercancerandtreatment thank u 4 the quick response .i had allreade done 4 TURB (the most intense pains i have ever felt )in 3 years but now its invasive in bladder mucle (pT2)..........I am afraid of all this especially when i am learning that u can go for neobladder but wake up with pouch due to short intestine blood vessels ?!?! and iam not ok with that AT ALL >... iam trying to coop with the idea by searching and investigating my self but its really frusttating .The two options they gave are cystectomy (neoblader option)or chemo and radiation (aggressively treatment ). bEcause i provide for my family (i have my own shop) i cannot figure out how to make all happen with tubes , urinating , spacial underwear and everything and work at the same time because 4- 6 weeks (as u describe )would be a very long time without working so iam thinking to start with chemo .On the other hand my ongologist told me that i would stay in hospital for 5-6 days (as u said)and i will leave hospital without kathetire or any tubes for that matter .On the other hand both doctors told me that ist extremely difficult to keep nerves that make erection possible (in contrast with what u say and live ),(i dont know what to believe) so am i looking in some kind of impotence ?No erectile function at al l??that would be a big problem for my relation with my wife and family (long term )..I have taken second opinion on treatment and the second doctor told me to start with chemo because cancer has entered the mucle tisue of the bladder but not gone through , though in future i might need to do a neoballder because chemo and radiation would scar the bladder and it would be almost useless.On the other hand i have question about stent on chest for chemo .As i learned there are 3 ways .1) pouring chemo inside bladder throygh penis with kathetre 2)put chemo intra veins 3 )stend on chest .. what are the diferences ?(i know u chose on chest with full anesthisia ) . the worst thing for me is fear and strange thought pattern and scenarios in my head .I am praying to god because i do not trust the doctors but ......time passes by and i feell a constant tik tak in my head .Anyway thank u for the answer and the info on your viedos.you make it seem easy but i know it wasnt .thnk you
@CMTattoos Word of warning. I was not able to work consistently while receiving chemo. My work is mental, and I did not have the capacity half the time. After surgery, I didn't leave the house during my multi-week recovery period--physically I could have, but mentally I didn't want to deal with all the tubes because they were unsightly and cumbersome. I don't know your situation, but if you have a one-person operation, you might want to think about hiring somebody you trust who can help you run the shop and help take care of your customers. Not just during your treatment/recovery, but also in case you are not able to in the future.
I chose a port because the type of chemo I took (MVAC) can permanently scar/harden the veins in your arm. With a port, I never had any pain during chemo infusions because the infusion site was predictable and I was able to use lidocaine to completely numb the skin in the area. The port requires out-patient surgery to install and remove, but I was able to combine those operations with other operations that I already needed.
@@bladdercancerandtreatment thank you very much for the info .my two things that i have to work with is to keep visceral nerves for erectile function second i want to be assured that neobladder is what i will get after surgery and not anything else and 3d i have to make sure and clear any day to day scedule about recovery ,though my doctor told me (4 the second time )that i will not have kathetre nor tubes when i leave the hospital ??!?!?! thats a strange reassurance because you and others say that for 5weeks (minimum) to 12 (maximum )is the recovery period ...
For a short time, I wore Depends Real Fit Briefs. Once I got more confident, I wore Depends Guards with normal briefs when I was going to be away from the house for an extended period of time. I don't use anything now.
Hey Kyle....Just wanted to thank you for sharing your harrowing trip! I don't think you will ever know how many people you have helped, how much angst you have removed for them, as fear of the unknown is always the worst! I seem to be moving right along the path you have so eloquently laid out. I'm at the, "Meet the Oncologist point fo,r I guess, the recommended Adjuvant chemo course followed by Radical Cystectomy down the road "gold standard" for T2 muscle invasive!
I think I can speak for all the folks on here that we all appreciate the effort you have made in this series and I'm sure we'd all love to see a bladder cancer - 9 sequel...if you're willing!
Thanks for lighting the way.......big fan!
Mike
My bro in law 64 is facing this right now i m going to show him your videos and give him hope because i think he's thinking it's the end . But you will give him some hope .😊
Kyle , you've been a true hero , forget sportsmen and anyone else ......you are a hero
Just read your last comment and I'm so glad you are doing well. I watched your videos and they are very informative. Thank you for sharing. Best of luck, live and peace.
Thanks a lot Kyle. You are helping so many people who are going through a similar diagnosis and treatment immensely.
Kyle thank you so much for your video's I am stage 2 very aggressive and these video's will help me prepare and have hope.
John Smith May your steps to final cure be guided by the almighty
Am 45 and I do have exactly what you have.. Do you live in the US?
Yes I live in the US. My luck I have a rare type .07% people get this type. Very aggressive. Started chemo 1 week ago. Handling it real good.
Thank you for taking the time and effort to help others! I’m just starting this journey and your videos have given me and others helpful insight as to what we may face. Thanks again and God bless!
Greeting Kyle and thanks for the reply to my comment. Great to hear, it's becoming a distant memory/nightmare! Nice to know there is light at the end of the tunnel and it's not a oncoming train! I'm still marching along to the beat of your videos, revisiting them, again and again as I progress down the path you have so generously mapped out!
I'm in week 7 of my 16 week course, biggest problem I'm encountering is lack of appetite and constipation issues, despite the lack of food intake!
Working through it though with advice from the nutritionist and chemo nursing staff!
Just glad to hear your doing well and will always be thankful to have you and your videos acting as my Sherpa as I wind on down the road!
Thanks again,
Mike
Wow most informative videos and pray you are all healed, Kyle
My son went through Testicular cancer op and Chemo treatment most of last year and level pegged day by day with Furious Pete going through his experience. Unknown to Pete, he was a great inspiration for my son as I am sure you sharing your painful experience with others will also inspire and encourage many others. Cancer is a frightening time for not only the sufferer but also for loved ones. Thankyou for sharing and I wish you well for a long and happy life :) x
god bless you brother, wish you a long and a healthy life ahead
god bless you brother
Thank you for sharing. I pray you stay well.
Im sitting in hospital 3 days since ileal neobladder surgery. I wanted to thank Kyle for the videos including 5 year update. Professional job that has helped me on every step. Dr's love the pants you recommended easy to flush bladder without exposing ones self. Not that that's a concern after all this, lol. I fought it for 7 years with 9 turbts and many many bcg treatments. When I processed to t1 I went with the illeal neobladder (Dr Patel at OU medical center).
Truly thanks Kyle for the invaluable help getting through this.
@marksisson7595 I’m so happy to hear that you’ve had the operation and you’re on the path back to a new normal after fighting for so long! I was dreading the operation, and worried about the impact it would have on my life, but I woke up with a sense of relief that the cancer was out of my body and, most importantly, that my life was back in my hands. After battling this for so long (7 years!), I hope you feel that too. The recovery is rough, and it takes determination to get through it, but I think it will be easier than the physical and mental toll of what you went through trying to fight it all those years. Thank you for commenting from your hospital room. I wish you a thorough recovery (doesn’t have to be fast, doesn’t have to be easy, but we want it to be thorough!). Please hit the call button, get a nurse in there, get up out of bed, and take a celebratory walk!
Btw, I got a chuckle out of your comment about avoiding exposing oneself. As if we have a modicum of modesty left. A little bladder cancer humor there.
As a future urologist, this ironically is the illness that worries me the most, every single urologist colleague of mine that smoked quit cigarette tobacco for this reason
Hi Kyle, can you give us a update? Thank you for all these videos they were so informative. I have stage 4 bladder cancer, they cant do surgery, but I'm taking immunotherapy. But anyway, you are an encourager. Thank you so much. God Bless you an yours...
Hello Sherry. Im sorry about your diagnosis. How you doing today? I hope you’re doing good.May I ask what symptoms you had before? Im suffering and going to see a urologist
Thank you Kyli.I am from Australia and my husband is waiting for biopsy report.t
Any updates ? How are you doing, great I pray.
Thank you so much. Excellent videos. Would be perfect it if you would make a last video, 4 years after, telling us how is life. Hopefully you will find the time to do it.
Thank you for sharing your experience, I learned a lot. I am somehow involved and in the process of diagnosis.
Thanks we are all praying for you.
Thanks for sharing your story and your most intimate experiences in your journey. I have a loved one going through this and your story will be very insightful. Surely glad to here you are doing well.
Thank you for sharing your experiences. Take care and God bless friend.
Hope your still ok. ...what a journey you had
Thank you for such honesty about your story. I've already had my prostate removed 5 years ago. Now passing blood and pain in bladder, getting cystostomy in 2 weeks, scared to death. My age is 67.
Bernie Criswell I hope you’re recovering well.
Had Cystoscopy last Friday things looked ok. Wednesday this week started passing blood again and pain in left side, waiting on Urologist to reply. Bladder did look good, so it's something else.
@@berniecriswell2713 what was it
@@1adrian1975 Scar tissue caused by radiation
Hey Kyle, just wanted to thank you again, as I just finished week one of my Neoadjuvant chemo with Gemcitabine and Cisplatin. I just re-reviewed your bladder cancer - 6 in which you discussed your first chemo course memoirs! So helpful as I nodded like a cow in agreement to your experiences and what I am currently feeling. I expect I will use your guide all the way through, looking for pearls of wisdom and tips and trips to navigate the course!
Still would like to know how you are doing with some elapsed time now after the ordeal!
Thanks again and all the best!
Mike
voodooutube1 I’m happy the videos are useful and happy you’re on your way. Please take the treatment one day at a time. People talk about the road to recovery, but treatment always felt like a train to me. It’s barreling down the track. I’m not driving; I’m just along for the ride. There are stops along the way, but all I need to do is be there and make sure I’m ready.
I’m doing very well. I haven’t made a follow-up video because I honestly don’t think about cancer as much as I used to. I’ve settled into my new normal-and honestly it’s not that much different from my old normal. I should make that last video though. I will at some point.
Keep riding that train.
@@bladdercancerandtreatment How are you doing now ? Was hoping for an update video.
Hi,
Very powerfull videos!
My father in law was just diagnosed with high grade stage 3 bladder cancer that had spread to one lymph node.
i watched all your videos and I feel more scared. I'm not sure what advice to give him. I'm very curious to know how you're doing, now. It would help a lot to have an other video, if that is ok with you.
I really hope you are completely free of cancer. That would also help us a lot.
miassa lyess I'm very happy to say that I've been NED for the year and a half since my cystectomy. I keep thinking I should make another video about life with a neobladder, but I haven't gotten around to it yet. The truth is, I don't think about cancer much anymore and the neobladder has become my new-normal, so much so that filming that last video isn't at the front of my mind. And really, that's maybe the best testimony I can give--I don't have to think about cancer anymore.
The videos maybe don't set a very positive tone. I shot them during treatment. My mantra throughout the ordeal was, "it is what it is". Admittedly not hope inspiring. And really that's still kind of the way I feel. But, now that I'm on the other side, I am LIVING proof that there is reason for hope. I'm still here. I've got my life back. I'm back to normal. I hope your father in law can say the same soon.
Kyle,
If you do check this. Is there a way to contact you privately? I just got hit with the exact same as you. I’m 47 and would appreciate advice.
Thank you
Streetglide88@yahoo
Thank you
I sincerely hope you are doing well.
Hey Kyle. Did you have issues with not wanting food and a feeling of food hard to swallow?
In the hospital, immediately after surgery, my throat was a little sore from intubation. I wasn’t allowed any fluids for a little while, and wasn’t allowed any food for longer. Even after I could eat solid food, I took it slow and didn’t eat much for a few days.
After I got home, I didn’t have any specific issues with swallowing or lack of appetite. I’m sure I ate less, just because food wasn’t my primary concern and I was not comfortable. If you’re caring for someone immediately after this surgery, maybe just offer them small healthy snacks that they can eat without trouble, where they sit, without having to get up or even sit up. I had a lot of stuff going on and eating felt like just another burden, so easy food was better for me.
Thank you brother how you doing now after four years? Thanks
I hope you are doing well just conduct TURPT 2 days ago
very moving I had a turbt 2 weeks ago, and are awaiting results. the doctor said he had removed a 2.4cm tumour and some muscle as well. I'm expecting the worse.
MrStevenhewkins
3yrs with high grade cis now beginning gemmyto chemo into bladder. My dr is hinting about neobladder. Your video is informative and i am happy you emerged on-the other side, and happy. Im hoping my bout with cancer will not return. At 61 yrs old i dont kmow how i will tolerate any major procedures.
Kyle. How are you doing now ? Im about to go through the same thing you did. Hope your doing well. Let us know. Thanks !
We are trying to create a universal group of ppl facing the same kind of this pathology (stage 2 and 3 aggressive bladder carcinoma) to provide moral support and share each other's experiences. If interested please introduce yourself in a mail and send it to geneva.narb@gmail.com
We will be happy to host you. God bless
How are you now
I wish i was as brave as you
I will find out thursday this week if i have it or not
Praying i dont
I havent watched all the videos yet just the first and the last i am too afraid to watch the rest hopfully i wont need to
Be strong be well thanks
Was this not stage 1? My dad had a surgery and basically he did none of this aftercare and SOME complications(bleeding,difficult to urinate sometimes) but none of the ones you had ....maybe ive missed something im confused. Maybe it was just because of the infection u got
Thank you Kyle.
I was wondering about working ? It seems difficult to try and work with these schedules of appointments and surgeries.
I’m scheduling for my TURB now. 🤞🏻
I took a lot of time off. I've got a desk job and I can work remote, but it was difficult for me to get any work done. During diagnosis and the initial procedures, I was able to work a good amount. During chemo, not as much. Throughout the time leading up to surgery, I was probably off more than I worked, but I did work enough part-time to stay on the payroll--at least up until surgery. I went on short-term disability for about 10 weeks for surgery and recovery, so I didn't work at all during that time (wasn't allowed to work even if I wanted to).
God bless you🌹🌹🌹
Man I wish I can talk to you. I got ultra sound with a small mass 2.8 what size was yours?
Mine was 1.5 centimeters and I had a patch of carcinoma in situ. We can talk here if you want! The BCAN forum on inspire.com was also helpful, but I'm not on there anymore.
@@bladdercancerandtreatment how are you doing today brotha?
@@bladdercancerandtreatment I saw all the videos you posted... so my question is. It looked like you were bleeding for a while right? Nothing really stopped the bleeding ?
Bleeding after the first TURBT? Yes, there was significant blood in my catheter for several days after the procedure. I think they expected it to stop bleeding while I was in the recovery room after the procedure because they were continuously flushing the catheter when I woke up from the procedure and waiting for the fluid to stop being pink/red, but it didn’t stop and they just sent me home. It stopped bleeding on its own after a few days, but not before clogging several times-which landed me in the emergency room at the hospital. After that, I made sure to have them teach me how to flush it myself and send me home with the equipment and saline to do it.
I want to ask
1)what about hormonal imbances ?if there was did u begun TRT ?or other hormonal fill up ?Did u removed prostate and viscral nerves also ?
2)sex drive and sex act ?
3)libido ?
4)urinating / void technique ?were u kathetire ur self as others ?
5)can u do training with a neo bladder (weights or fightisg sports )?
6)what changed in case of everyday life ?
7)how long didi it take to re arrange the emptying time ?and how u re train intstine (no mucle )to push ?was it through the abdminal mucles ?
8)my doctor tels me that i will have no tubes at all when i will leave hispital after 5-7 days .
i have to decide betwweeen agressive chemo vs neoblader and i want to know pros and cons ...
respectfully ,thnks for the info in advance
@CMTattoos I didn't consider hormones. I was just trying to stay alive. That said, I have not noticed any hormonal differences after losing my prostate--nothing that couldn't be attributed to just getting old (38 when diagnosed, 45 now). My prostatectomy was nerve-sparing. I still have the same sex drive and almost the same erections (maybe 90%). I no longer ejaculate, but I still have the same muscle contractions (just dry). I have never catheterized. I urinate by flexing my abdominal muscles and pushing it out. It's hard to describe, but I bet you can do it right now with your bladder if you try to force the urine out while you're urinating. I don't do any heavy weight lifting or fighting, but I don't think I would have a problem with that--especially if I urinated before (which I would). Biggest changes for everyday life is that I urinate on a schedule--every 2-4 hours during the day, every 2 hours at night (I set an alarm for every 2 hours at night to wake up and urinate, and I do that all night). Training the muscles to retain urine and expel urine took maybe a month before I was confident. I don't have any techniques to pass on, but if you're fit, and sounds like you are, then you should be fine. The muscles I use to retain urine seem to be very similar to the ones that I use to hold in a fart. Different, but very similar. Took me several months to be able to fart without peeing.
I am very leery of not having tubes by the time you leave the hospital. Check the description of this video for my timeline. I had tubes for 6 weeks after the operation. Each of those tubes had a reason and purpose for being there.
Why are you choosing between chemo or a cystectomy/neobladder? I had both. If you are young and fit, then I strongly recommend both. The data when I was diagnosed said that chemo raised the 5-year survival rate by 5%. That is worth it. No doubt.
If for some reason I had to choose, I would have 100% chose cystectomy. In my case, chemo was only meant to raise my survival rate by destroying any cancer that may have been elsewhere in my body, just in case. It is the cystectomy that removed the cancer and I believe it is the cysectomy that saved my life.
@@bladdercancerandtreatment thank u 4 the quick response .i had allreade done 4 TURB (the most intense pains i have ever felt )in 3 years but now its invasive in bladder mucle (pT2)..........I am afraid of all this especially when i am learning that u can go for neobladder but wake up with pouch due to short intestine blood vessels ?!?! and iam not ok with that AT ALL >... iam trying to coop with the idea by searching and investigating my self but its really frusttating .The two options they gave are cystectomy (neoblader option)or chemo and radiation (aggressively treatment ).
bEcause i provide for my family (i have my own shop) i cannot figure out how to make all happen with tubes , urinating , spacial underwear and everything and work at the same time because 4- 6 weeks (as u describe )would be a very long time without working so iam thinking to start with chemo .On the other hand my ongologist told me that i would stay in hospital for 5-6 days (as u said)and i will leave hospital without kathetire or any tubes for that matter .On the other hand both doctors told me that ist extremely difficult to keep nerves that make erection possible (in contrast with what u say and live ),(i dont know what to believe) so am i looking in some kind of impotence ?No erectile function at al l??that would be a big problem for my relation with my wife and family (long term )..I have taken second opinion on treatment and the second doctor told me to start with chemo because cancer has entered the mucle tisue of the bladder but not gone through , though in future i might need to do a neoballder because chemo and radiation would scar the bladder and it would be almost useless.On the other hand i have question about stent on chest for chemo .As i learned there are 3 ways .1) pouring chemo inside bladder throygh penis with kathetre 2)put chemo intra veins 3 )stend on chest ..
what are the diferences ?(i know u chose on chest with full anesthisia ) .
the worst thing for me is fear and strange thought pattern and scenarios in my head .I am praying to god because i do not trust the doctors but ......time passes by and i feell a constant tik tak in my head .Anyway thank u for the answer and the info on your viedos.you make it seem easy but i know it wasnt .thnk you
@CMTattoos Word of warning. I was not able to work consistently while receiving chemo. My work is mental, and I did not have the capacity half the time. After surgery, I didn't leave the house during my multi-week recovery period--physically I could have, but mentally I didn't want to deal with all the tubes because they were unsightly and cumbersome.
I don't know your situation, but if you have a one-person operation, you might want to think about hiring somebody you trust who can help you run the shop and help take care of your customers. Not just during your treatment/recovery, but also in case you are not able to in the future.
I chose a port because the type of chemo I took (MVAC) can permanently scar/harden the veins in your arm. With a port, I never had any pain during chemo infusions because the infusion site was predictable and I was able to use lidocaine to completely numb the skin in the area. The port requires out-patient surgery to install and remove, but I was able to combine those operations with other operations that I already needed.
@@bladdercancerandtreatment thank you very much for the info .my two things that i have to work with is to keep visceral nerves for erectile function second i want to be assured that neobladder is what i will get after surgery and not anything else and 3d i have to make sure and clear any day to day scedule about recovery ,though my doctor told me (4 the second time )that i will not have kathetre nor tubes when i leave the hospital ??!?!?! thats a strange reassurance because you and others say that for 5weeks (minimum) to 12 (maximum )is the recovery period ...
What kind of pads did you use in the briefs?
For a short time, I wore Depends Real Fit Briefs. Once I got more confident, I wore Depends Guards with normal briefs when I was going to be away from the house for an extended period of time. I don't use anything now.