I was just diagnosed with muscle invasive Bladder cancer. Your videos are exactly what I have been looking for. I need a real person to tell me how much stuff hurts and how good or bad recovery is. I am so glad you are a real person!
I was told I have a large bladder tumor about 2 months ago. All of the surveillance items are starting this week. I have just heard some information from you, that for me, might just be bad news. I have an odd heart problem called Systematic Obstructive Hypertrophic Cardiomyopathy, plus I have 6 stents in my heart. I don't know anything about my tumor except that I have one so I have no idea what kind of treatment I can have and I am quite nervous. I covet all of the kind prayers of my Christian brothers and sisters on RUclips. Thank you for your wonderful effort to educate the rest of us, it is a kindness you show all of us that are probably going to go through some of the things you have gone through; I am very grateful.
All the best, Kyle! I started basically the same as you with T2. Started immunotherapy treatments in December 2023 and stopped. On April 19, 2024. Just had my radical cystectomy May 24, 2024, and only had to options. Neobladder wasn't an option for me, so I chose the ileal pouch. I'm still recovering and waiting on the pathology report, hopefully all comes back with good results. My best to you and really enjoyed your videos. I hope this message finds you well.
Kyle, thanx for sharing all this very important info. My husband was diagnosed with stage2 cancer in the beginning of October. He is 54 years old. We decided on a window period of 3 months as this is really a big thing to decide about. Will be going back early Jan 2023. They will then do a ct scan and scope again and from there we will most properly follow the exact same route as you. My husband had a TURB and the biggest part of the growth was removed.
I’m sorry that you and your husband have to go through this. These videos focus on my experience because, well I was kind of fixated on me at the time. I don’t know if I made it clear how important my wife was during this whole process. She was an advocate for me when I wasn’t being one for myself, she called the doctors when I was too macho to ask for help, she listened to the doctors when I was too preoccupied to process what they were saying, she took me to nearly every appointment (and there were so many), she helped with the dirty work of maintaining all of my plumbing post-surgery, she did the housework and took care of our kid while I was too tired to get off the couch, and most importantly she was just there with me. It was a lot. And she never complained about it. The most she said was that everybody asked how I was, but nobody ever asked how SHE was. I doubt I ever asked her either because, like I said, I was pretty fixated on what I was going through. But I’ve got an immense amount of appreciation for what she did for me, even if I didn’t express it well at the time. Even if you don’t get recognition, please know that what you do for your husband is just as important as what the doctors and nurses do, and that he appreciates it even if it may be difficult for him to express that at the time.
Thank you for sharing this humbling experience. I’ve had the biopsy and mine has not gone into the muscle yet, but it is the aggressive type. On the 25th I have surgery scheduled but no decisions have been made for treatment after that. The surgeon said depending on what he finds I may get re-staged and that will determine the course of treatment. I did ask if he thought I’d need chemo to put a port in, but we shall see. I am older and female with some other chronic conditions which may bias my results, but your experience has given me a grounded sense of the reality I face and I thank you for that. Why can’t it be cancer of the finger? Who wants to talk about pee?
Great information,and that's great that your being as brave as you are,it all has to do with having a strong will to live and understanding the whole process of your treatment,thank you this was very informational,and glad that this was diagnosed in time God bless
I was very nervous. I might seem collected in these videos, but that's only because I recorded them weeks afterwards. At the time, I would have been crying with you. For the cystoscopy, I can tell you that being nervous about it was the worst part. The thought of it was worse than the actual procedure. Knowing that now wouldn't make me feel any better though--I would still be nervous if I had to do it again today. Other than that, my general advice is to take these things one step at a time. Only think about what is right in front of you. Worrying about it isn't going to make it any better. One step at a time. It is what it is, and it's gonna be what it's gonna be. One step at a time. Best of luck to you.
I have to stop here i havent had my biopsy yet and at this point i would rather not know about the worst case. Thankfully im 74 so living without a bladder though it would not be as horrible.
That is a healthy approach. Take it one step at a time. It is what it is. Also, it is going to be what it will be. That was my mantra. Some people took that as me not having hope, but that wasn’t true. I hoped things would turn out well, but I was also ready to accept whatever it would be. Acceptance was how I coped. I am a controlling type of person, but I realized that I had very little control in this situation. No amount of research on my part would fix it. No amount of worrying would make it any better. The best thing I could do was to accept my situation, find healthcare professionals that I trusted, and pursue every treatment available.
I am 45 married and living in Geneva. In fact, I am experiencing the same case >>Muscle INVASIVE (PT2) grade III carcinoma.. I've been through the same experience but I rejected cystectomy and chemo.. I am 45 and planning to set a natural therapy for myself.. Are you fine now?
Nayzak A I am doing very well. Even without a bladder, I still urinate like normal, I look normal, I act normal, and, most important of all, I feel normal. I was back to normal within 3 months of my operation. I am still here to see my child grow up. I am still here spending time with my wife, my family, and my friends. I am still here doing the things that I love to do. The reason that I am still alive is because I was fortunate enough to catch the disease while it was still operable-while it had only infected a single organ, an organ that can be removed, an organ that is not necessary for survival. I am still here because my doctors were able to remove the cancer from my body. Without this operation, my doctors speculated that I would would have died within two years. I just marked my three-year anniversary with another clear scan. I understand how terrifying this diagnosis is. I feel strongly that people need deal with it in their own way. I don’t know the circumstances that lead you to your decision. But I think you’re making a mistake. You must fight this with ALL of the treatments that are available to you.
I plan to make the same decision as you did , no chemo and no cystectomy , but please enlighten me as what alternative therapy that are natural . How are you feeling right now.
Nayzak A I plan to make the same decision as you did , no chemo and no cystectomy , but please enlighten me as what alternative therapy that are natural . How are you feeling right now.
Three potential causes of bladder cancer that I know of are smoking, exposure to particular manufacturing chemicals, and genetic predisposition. I was not exposed to those chemicals as far as I know. I had a genetic scan done and they found no known markers. I believe my cancer was caused by smoking. I smoked about a pack a month in my late teens and twenties. Not enough that I became addicted and not enough that I ever considered myself a smoker. Even in moderation, carcinogens are still carcinogens.
Bob K I don't want to name specific names on a public forum, but my urologist and surgeons are with Urology of Indiana and my oncologist (and chemotherapy) is with Community Cancer Center North, both in Indianapolis, Indiana, in the USA. I took the first referral I got (from my PCP). I was so overwhelmed with the diagnosis that I never even thought to look anywhere else. Best treatment I've ever had. My urologist and my oncology nurse practitioner are two of my favorite people in the world. They not only saved my life--they also maintained my quality of life.
@@bladdercancerandtreatment Did they ever tell you what caused the cancer? You're very young. Did you say you smoked, as I believe that's a high risk factor? You said you didn't work with chemicals, so I'm dumbfounded at all of this. Anyway, best of luck in the years ahead, hope you have a long and healthy life with your family.
Bravo Kyle. You just superbly performed a great public service. Thank You
I was just diagnosed with muscle invasive Bladder cancer. Your videos are exactly what I have been looking for. I need a real person to tell me how much stuff hurts and how good or bad recovery is. I am so glad you are a real person!
I was told I have a large bladder tumor about 2 months ago. All of the surveillance items are starting this week. I have just heard some information from you, that for me, might just be bad news. I have an odd heart problem called Systematic Obstructive Hypertrophic Cardiomyopathy, plus I have 6 stents in my heart. I don't know anything about my tumor except that I have one so I have no idea what kind of treatment I can have and I am quite nervous. I covet all of the kind prayers of my Christian brothers and sisters on RUclips. Thank you for your wonderful effort to educate the rest of us, it is a kindness you show all of us that are probably going to go through some of the things you have gone through; I am very grateful.
HOCM gets treated by septal myectommy
Your experiences are invaluable as I go forward with turbt..thanks for sharing.❤
All the best, Kyle! I started basically the same as you with T2. Started immunotherapy treatments in December 2023 and stopped. On April 19, 2024. Just had my radical cystectomy May 24, 2024, and only had to options. Neobladder wasn't an option for me, so I chose the ileal pouch. I'm still recovering and waiting on the pathology report, hopefully all comes back with good results. My best to you and really enjoyed your videos. I hope this message finds you well.
Thank you Kyle, you’re brave and honest. You have helped me understand this tremendously.
Kyle, thanx for sharing all this very important info. My husband was diagnosed with stage2 cancer in the beginning of October. He is 54 years old. We decided on a window period of 3 months as this is really a big thing to decide about. Will be going back early Jan 2023. They will then do a ct scan and scope again and from there we will most properly follow the exact same route as you. My husband had a TURB and the biggest part of the growth was removed.
I’m sorry that you and your husband have to go through this. These videos focus on my experience because, well I was kind of fixated on me at the time. I don’t know if I made it clear how important my wife was during this whole process. She was an advocate for me when I wasn’t being one for myself, she called the doctors when I was too macho to ask for help, she listened to the doctors when I was too preoccupied to process what they were saying, she took me to nearly every appointment (and there were so many), she helped with the dirty work of maintaining all of my plumbing post-surgery, she did the housework and took care of our kid while I was too tired to get off the couch, and most importantly she was just there with me. It was a lot. And she never complained about it. The most she said was that everybody asked how I was, but nobody ever asked how SHE was. I doubt I ever asked her either because, like I said, I was pretty fixated on what I was going through. But I’ve got an immense amount of appreciation for what she did for me, even if I didn’t express it well at the time. Even if you don’t get recognition, please know that what you do for your husband is just as important as what the doctors and nurses do, and that he appreciates it even if it may be difficult for him to express that at the time.
@@bladdercancerandtreatment You just touched my heart Kyle. Your words of support from way up north (we are from South Africa) is highly appreciated.
Thank you for sharing this humbling experience. I’ve had the biopsy and mine has not gone into the muscle yet, but it is the aggressive type. On the 25th I have surgery scheduled but no decisions have been made for treatment after that. The surgeon said depending on what he finds I may get re-staged and that will determine the course of treatment. I did ask if he thought I’d need chemo to put a port in, but we shall see. I am older and female with some other chronic conditions which may bias my results, but your experience has given me a grounded sense of the reality I face and I thank you for that. Why can’t it be cancer of the finger? Who wants to talk about pee?
Such a good video! I have bladder cancer now.
I been watching your videos. My guy friend is 60 and just found out he has bladder cancer.
nice work!
I'm going to follow ur path.
Your definitely a trooper
Great information,and that's great that your being as brave as you are,it all has to do with having a strong will to live and understanding the whole process of your treatment,thank you this was very informational,and glad that this was diagnosed in time God bless
Thank you for your valuable information.
Wishing you the best
I'm half the man u are ....I'm watching crying watching any pointers on cystocopy
I was very nervous. I might seem collected in these videos, but that's only because I recorded them weeks afterwards. At the time, I would have been crying with you. For the cystoscopy, I can tell you that being nervous about it was the worst part. The thought of it was worse than the actual procedure. Knowing that now wouldn't make me feel any better though--I would still be nervous if I had to do it again today. Other than that, my general advice is to take these things one step at a time. Only think about what is right in front of you. Worrying about it isn't going to make it any better. One step at a time. It is what it is, and it's gonna be what it's gonna be. One step at a time. Best of luck to you.
You are very brave
What stadijum you has ?
Got bles you !
I have to stop here i havent had my biopsy yet and at this point i would rather not know about the worst case. Thankfully im 74 so living without a bladder though it would not be as horrible.
That is a healthy approach. Take it one step at a time.
It is what it is. Also, it is going to be what it will be. That was my mantra. Some people took that as me not having hope, but that wasn’t true. I hoped things would turn out well, but I was also ready to accept whatever it would be. Acceptance was how I coped. I am a controlling type of person, but I realized that I had very little control in this situation. No amount of research on my part would fix it. No amount of worrying would make it any better. The best thing I could do was to accept my situation, find healthcare professionals that I trusted, and pursue every treatment available.
I am 45 married and living in Geneva. In fact, I am experiencing the same case >>Muscle INVASIVE (PT2) grade III carcinoma.. I've been through the same experience but I rejected cystectomy and chemo.. I am 45 and planning to set a natural therapy for myself.. Are you fine now?
Nayzak A I am doing very well. Even without a bladder, I still urinate like normal, I look normal, I act normal, and, most important of all, I feel normal. I was back to normal within 3 months of my operation. I am still here to see my child grow up. I am still here spending time with my wife, my family, and my friends. I am still here doing the things that I love to do. The reason that I am still alive is because I was fortunate enough to catch the disease while it was still operable-while it had only infected a single organ, an organ that can be removed, an organ that is not necessary for survival. I am still here because my doctors were able to remove the cancer from my body. Without this operation, my doctors speculated that I would would have died within two years. I just marked my three-year anniversary with another clear scan. I understand how terrifying this diagnosis is. I feel strongly that people need deal with it in their own way. I don’t know the circumstances that lead you to your decision. But I think you’re making a mistake. You must fight this with ALL of the treatments that are available to you.
Well said Kyle
I plan to make the same decision as you did , no chemo and no cystectomy , but please enlighten me as what alternative therapy that are natural . How are you feeling right now.
Nayzak A
Nayzak A I plan to make the same decision as you did , no chemo and no cystectomy , but please enlighten me as what alternative therapy that are natural . How are you feeling right now.
Stage determines how you treat itt😊
What was the cause of your Bladder cancer at such a young age, did you try to understand ?
Three potential causes of bladder cancer that I know of are smoking, exposure to particular manufacturing chemicals, and genetic predisposition. I was not exposed to those chemicals as far as I know. I had a genetic scan done and they found no known markers. I believe my cancer was caused by smoking. I smoked about a pack a month in my late teens and twenties. Not enough that I became addicted and not enough that I ever considered myself a smoker. Even in moderation, carcinogens are still carcinogens.
@@bladdercancerandtreatmenthow are you now please tell me
where did you have your procedures and what lead you to go to the place you finally picked?
Bob K I don't want to name specific names on a public forum, but my urologist and surgeons are with Urology of Indiana and my oncologist (and chemotherapy) is with Community Cancer Center North, both in Indianapolis, Indiana, in the USA. I took the first referral I got (from my PCP). I was so overwhelmed with the diagnosis that I never even thought to look anywhere else. Best treatment I've ever had. My urologist and my oncology nurse practitioner are two of my favorite people in the world. They not only saved my life--they also maintained my quality of life.
@@bladdercancerandtreatment Did they ever tell you what caused the cancer? You're very young. Did you say you smoked, as I believe that's a high risk factor? You said you didn't work with chemicals, so I'm dumbfounded at all of this. Anyway, best of luck in the years ahead, hope you have a long and healthy life with your family.
Grade 0 caught early