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Bladder Cancer and Treatment
United States
เข้าร่วมเมื่อ 26 ส.ค. 2017
In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. My treatment consisted of four rounds of dose-dense MVAC chemotherapy, followed by a radical cystectomy (complete removal of bladder) and prostatectomy (removal of prostate, nerve-sparing in my case) with an orthopedic neobladder urinary diversion (new bladder constructed from my own intestines). Thanks to many excellent doctors and nurses, countless unseen researchers, two extraordinary surgeons, and the support of my family and friends, I'm still here to share my story. I recorded these video as I was going through the treatment. This is a detailed account of my treatment and some of the helpful lessons that I learned along the way. The story is unfiltered; I don't avoid frightening, painful, or embarrassing topics.
Bladder Cancer - 9 - 5-year Update
Five years after my neobladder and prostatectomy surgery. The New Normal with a neobladder and how bladder cancer has affected me.
This is the 9th in a series of videos that document my experience with bladder cancer and its treatment.
In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the helpful lessons that I learned along the way. The story is unfiltered; I don't avoid frightening, painful, or embarrassing topics.
My treatment consisted of four rounds of MVAC chemotherapy followed by a radical cystectomy and prostatectomy with an orthopedic neobladder urinary diversion. Thanks to many excellent doctors and nurses, countless unseen researchers, two extraordinary surgeons, and the support of my family and friends, Spring of 2021 marked my fifth year of remission.
This is the 9th in a series of videos that document my experience with bladder cancer and its treatment.
In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the helpful lessons that I learned along the way. The story is unfiltered; I don't avoid frightening, painful, or embarrassing topics.
My treatment consisted of four rounds of MVAC chemotherapy followed by a radical cystectomy and prostatectomy with an orthopedic neobladder urinary diversion. Thanks to many excellent doctors and nurses, countless unseen researchers, two extraordinary surgeons, and the support of my family and friends, Spring of 2021 marked my fifth year of remission.
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Bladder Cancer - 8 - Surgery and Recovery, Part 2 (Home)
มุมมอง 12K7 ปีที่แล้ว
Nine weeks of at-home recovery from radical cystectomy and prostatectomy with neobladder. This is the 8th in a series of videos that document my experience with bladder cancer and its treatment. In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the helpful lessons that I learned along t...
Bladder Cancer - 7 - Surgery and Recovery, Part 1 (Hospital)
มุมมอง 19K7 ปีที่แล้ว
Radical cystectomy and prostatectomy with neobladder and the week of recovery in the hospital. This is the 7th in a series of videos that document my experience with bladder cancer and its treatment. In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the helpful lessons that I learned al...
Bladder Cancer - 6 - Chemo Summary
มุมมอง 8K7 ปีที่แล้ว
Conclusion and summary of four rounds of MVAC chemotherapy. This is the 6th in a series of videos that document my experience with bladder cancer and its treatment. "Port"able Clothing (great for catheters too): www.ronwear.com/ In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the help...
Bladder Cancer - 5 - Chemo First Round
มุมมอง 8K7 ปีที่แล้ว
First round of MVAC chemotherapy. This is the 5th in a series of videos that document my experience with bladder cancer and its treatment. In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the helpful lessons that I learned along the way. The story is unfiltered; I don't avoid frighteni...
Bladder Cancer - 4 - TURB and Stent
มุมมอง 7K7 ปีที่แล้ว
The operation to de-bulk the tumor via Trans-Urethral Resection of Bladder (TURB) and application of a ureteral stent. This is the 4th in a series of videos that document my experience with bladder cancer and its treatment. In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the helpful l...
Bladder Cancer - 3 - Diagnosis and Treatment Plan
มุมมอง 12K7 ปีที่แล้ว
The diagnosis and doctor visits that prior to starting treatment. This is the 3rd in a series of videos that document my experience with bladder cancer and its treatment. In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the helpful lessons that I learned along the way. The story is unf...
Bladder Cancer - 2 - Biopsy and TURB
มุมมอง 20K7 ปีที่แล้ว
Diagnosis of bladder cancer via Trans-Urethral Resection of Bladder (TURB) and biopsy. This is the 2nd in a series of videos that document my experience with bladder cancer and its treatment. In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer. These videos are a detailed account of my treatment and some of the helpful lessons that I learned along the ...
Bladder Cancer - 1 - Detection
มุมมอง 30K7 ปีที่แล้ว
The symptoms that I experienced and the doctor visits that lead up to the detection of bladder cancer. This is the 1st in a series of videos that document my experience with bladder cancer and its treatment. Cancer statistics taken from cancer.gov, late 2015: seer.cancer.gov/statfacts/html/urinb.html In the Fall of 2015, at the age of 38, I was diagnosed with Stage 2, aggressive bladder cancer....
At the first sign of pain or blood, run to a urologist, as this cancer can pass through the bladder muscle and go all over through your body. The sooner addressed, the better. If the Doctor sees anything red when he examines your bladder, have a cysto immediately. This cancer can go through the bladder muscle and spread. Thank you to this kind man for explaining what will /can happen. Blessings to you, sir.
Don't know if you are still around. I'm in the UK. Just watched your 1st video and you made me smile and cry. I am to go into hospital on the 24th for a fixed/rigid cystoscopy (will be put to sleep for this procedure). I too have heavy bleeding and also noticed small bits of pale coloured flesh in my urine and have massive clots with no pain. I bleed about every 2 weeks at the moment which lasts about 24 hours then it changes to brown coloured urine until all clots have been passed. So anyways I wanted to thank you for your honesty and I also felt your nervousness but I am thankful I came across your videos and will get through them one by one. No idea if you are monitoring but if you are God Bless You n Yours.
Hey Kyle. Just got my bladder, prostate and 11 lymph nodes removed. Dr. said prognosis is very good. I got a neobladder. Just laying up in the hospital thinking of you and how your videos have really helped me through this process. Hoping to get discharged tomorrow. Again Thank you!! Anybody reading this comment and has a question feel free to reach out.
Great to hear from you! Remember to walk, walk, walk, and walk some more! Best of luck with the lymph node biopsy; that was an anxious time to be sure, but worrying didn't change anything. Not gonna lie, it's not an easy recovery. But I hope you feel like you've got a little more control over your fate at this point. Your job is to get better, get stronger, and get back to living your life--and that is in your hands, my friend!
My stent didn't bother me.
You answered a question I hadn't even asked yet and you did it inside 52 seconds. Thank you.
Thanx for this , it would be easy just to try and forget and move on . A lot of people love you for all hope you hv given them
American health let you down mate, that’s fkd up,
Sounds like your Dr failed you 😢
Just had a cystoscopy to remove two tumors. I go to pathologist tomorrow for the biopsy results. I’ve been peeing blood on and off for months. I have interstitial cystitis too so my bladder was a wreck. He burned a lot of the inside. We knew about one tumor that looked like grapes but when he was in there burning the lining, boom…. He found another tumor. Nervous. In pain from procdure. Peeing all sorts of chunks. Ugh. How are you now?!! I’m 38. Close to your age.
Just had a cystoscopy to remove two tumors. I go to pathologist tomorrow for the biopsy results. I’ve been peeing blood on and off for months. I have interstitial cystitis too so my bladder was a wreck. He burned a lot of the inside. We knew about one tumor that looked like grapes but when he was in there burning the lining, boom…. He found another tumor. Nervous. In pain from procdure. Peeing all sorts of chunks. Ugh. How are you now?!! I’m 38. Close to your age.
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?
Your experiences are invaluable as I go forward with turbt..thanks for sharing.❤
Thanks for the confidence for upcoming turbt..low grade. Thought I was 'Born to Smoke' using cigarette for ego boost.❤
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 .😊
Googles to you I’m just starting my problem cancer bladder is a test go to go howdy
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?
Couldn't pee for ages after getting out of bath. When I did it was just blood. Turns out I had blood clots. And it took a week for it to return to normal. Some nurses were good and some were bad. At this time all any one thought I had was iud. But today I found out after going through the both things from first video. Had that stuff in veins which made me very warm. Then a few hours later they took me upstairs and put a camera in me. Wasn't as bad as the catheter at first. I then was told I had growth. Which they suspect it being cancerous. So waiting for a biopsy now. This has helped. So thanks for that.
My husband came home with a catheter for 7 days (8-20-24). He was miserable. Thank God he didn’t have any blockage problems. He goes for the second surgery 9-26-24.
Did you have any lymph nodes removed?
During surgery, yes, I think so. They biopsied some surrounding lymph nodes and I received results after I returned home.
You're such a help. I'm about 9 days out from my first chemo and have been worried about how the chemo experience is going to go down. Thanks again
You look amazing too!
Thank you so much for sharing. I watched all of your videos, so informative! I'm praying I don't have to do the surgery. Thanks again, you're amazing!
Hi Kyle. thanks for sharing your story over the last few years. your a Strong person and have been an inspiration for so many people on the planet. you give good information for people going through the same things as you have. i wish you would consider doing just a couple up dates that will give so many people good hope. Thanks again for helping so many
I would post updates, but not a lot has changed since this 5-year update aside from some more gray hairs. My health is the same. Continence is the same. Still alarms every 2 hours at night. My oncologist said my primary care doctor can take it from here, so I have stopped seeing the oncologist. Also stopped seeing my cardiac oncologist. Also stopped seeing my nephrologist. So aside from my primary care physician, the only cancer-related doctor I see is my urologist. He saved my life so I’m happy to see him. Other than that, life is pretty much the same as it was in this video. I know it’s hard to believe for people currently going through cancer diagnosis or treatment or recovery, but for me the new normal eventually did become normal. Normal is normal, and happily I don’t have much to talk about.
@@bladdercancerandtreatment. That’s awesome! So happy for you. People want an update because they are hoping the best for you. So even if you jump on and say what you wrote, we’d appreciate it! My husband is starting the journey and all hope is welcome. 🙏 best to you, thanks for sharing.
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.
Just found out I’ll be having my bladder removed. I’m having a hard time deciding if the neo bladder is for me. Did you have to self catheterize? Was it painful? After my turbt I had terrible pain with my Foley catheter mostly terrible bladder spasms. Every time I moved around either adjusting my position in a chair or walking to the bathroom I would get terrible pain. Thanks
I have never self catheterized. Please ask your urologist/surgeon what results they anticipate for you given your situation and their past patients’ results.
Will do. Thanks!! I’m leaning towards neo bladder as I’m only 47. I feel like this option would give me the most normal life style.
You’re so brave!!
So you have to pee every couple hours. Do you feel like you have to pee or is there no feeling of need to urinate and that’s why you go on a schedule?
It's a mixture of both. I may get a sensation similar to being full of gas, but not always. If I get too full and do not realize it, I suddenly have trouble holding it in. Because I worry about that, I've trained myself to go every couple hours. I get nervous that I've waited too long, so I just go.
@@bladdercancerandtreatment thanks. I’m a 47 just had the turbt done and found out it’s muscle invasive. I’m just scared, and your videos have really helped.
QUESTION PLZ. I have bladder canxer. Got really bad separate nerve pain affecting my whole pelvis i cannot poo properly its like my intestine is not working. When i try to pee urine. Its simply very sore. my whole penis down to my perineum is unbelievable pain. Its also i think conectrd to my previous 2 years. Ago prostatectomy. Its possibly nerve damage by scarring... whats you views. Thanks
I’m sorry, that sounds awful. I think you need to see a urologist.
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
Cancer is humbling ❤
Thank you. I am starting the neo-bladder life and I feel better knowing some unknowns. You saved me sir.
How’s your journey going? I just got a neobladder Jan.3rd 2025.
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.
Thanks for sharing! Question: do you do sports? if so, any issues? Thank you,
No I don’t, but I don’t think I’d have any problems as long as I could stop to urinate every 2-4 hours.
@@bladdercancerandtreatment Kyle, really interesting your story, and I guarantee to you that you should be proud of sharing your experience. I am sure that (also in my case) is helping a lot of people to go through this tough part in life, and give (us) some hope. I also have had similar diagnosis, but it was TCis, so really intial, But in any case it has been suggested (by the doctors here in the Netherlands) the cistectomie. Searching a bit i´ve seen that there are the 2 types, with the poach or with the neobladder. As a young person, the poach really seems to be rough, because of all the appearance, and to have that attached to your body, etc. pretty sure youve been through this, weighting which one is better. But I also have heard a lot of issue with the neobladder, as people that needed to use a catheter to empty the bladder (which freaks me out thinking doing this 5x a day). Do you need(ed) to use the catheter? or if not, how does it works? it comes out naturally? Best regards, and again, thanks for sharing! All the best
I have never had to use a catheter. Before the surgery, my doctor assured me that I would not need to, and honestly I did not believe him, but he was correct. Please ask your surgeon how many of his neobladder patients have to catheterize, and what differentiates those who do from those who do not. My surgeon told me the people who end up having to use a catheter have stretched their neobladder too much. Imagine filling a small balloon with water and squeezing it in your hand-the water would spray out and you could probably empty the whole balloon. Now imagine putting the same amount of water in a much larger balloon and trying again-the water would just go to the areas of the balloon that you are not squeezing. This is why I urinate on a schedule and have never tried to increase my capacity beyond around 3 hours. I have kept my neobladder small so that I can void it 100%.
are you able to work? Did you have pain with your cancer before any treatment? What symptoms did you have early on?
@Taylor-ix3om I returned to work 2.5 months after my surgery. I am a software engineer (desk job). I had no pain. My only symptoms were visible blood and tissue in my urine.
Hi kyle, you look great! Thank you for the guidelines and experiences you shared during your difficult time. Now, im facing challenges and bravery to surpass this situation. I diagnosed with Hi grade Urinary bladder mass tumor. And already scheduled for TMT (Trimodal Theraphy) this August. But, i have 50/50 decision since i saw your videos for TMT and Neobladder (studers pouch) Thank you! Keep safe Bro!
Can you give us an update on how you are doing?
I’m still here! No changes to continence or daily life beyond what I talked about in this video. No longer seeing the cardiac oncologist nor the nephrologist. Still see my urologist yearly. I saw trace visible blood in my urine a few years ago and had a rigid cystoscopy to investigate. Ended up being a lesion on my bladder that my urologist cauterized. That’s been the only complication since this video. Still here. Spent the weekend financial planning for retirement. Taking a vacation down to Gulf Shores with my kiddo next week. Just living life!
Thank you so much for responding. Very happy to hear you are doing well. My husband will be having this surgery next week and we found your videos quite helpful. Thank you
Violated you?? Really dude? A pedo violates you a doctor examines you
Good for you how you got help for your bladder cancer I still have the bladder cancer and blood in urine plus blood from bleeding ulcer and I have blood still in urine I renal kidney disease my kidneys been bothering me when I take a Mile walk or two miles with two mile walk my kidneys start hurting my kidney function is 73 persent current Dr said I am very concerned I need kidney transplant I have congestive heart faluire. I don't know if I have kidney stones or not why I have pain on kidneys when I take Mile walk or two mile walk this why I don't need no drama in my life or other people causeing problems in our marriage outsiders trying to divide our marriage not right I had bladder inconvenience from my bladder cancer today some blood in my urine I have to wear pads at times today had bad day had to use adult depends because it is out of my control I have my good days for my bladder today is bad day for bladder cancer I have incontince problems from bladder cancer now I feel so ashamed i know it is out of my control my bladder cancer
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.
Grade 0 caught early
Stage determines how you treat itt😊
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
I am just starting my journey
Thanks for your sharing. I was just diagnosed with bladder cancer and have a battle ahead.
Thank you so much for your testimony. I got same diagnosis and treatment (surgery now two years ago) at age 56. Doing well. Only difference is that apart from urinating on schedule I also need to empty the neo-bladder by probe ("sondage") four times a day. I can sleep in blocks of four hours, however. I wish you a long and healthy life still!
The process takes about 15 mins. But the anesthesia kept u in the hospital for 3-4 hours. Waking up from that was bad for me cos when I went home the catheter was very discomforting. Till it was removed 3 days later from my experience. Then every time I urinate it burned like crazy. That lasted for a few days before the burning stop.
I didn’t have any pain when they did it. Just a bit discomfort thank god. But like u didn’t didn’t dare to look 😂
Ty for the vid. I’m getting ready to have this surgery done. Your experience is very helpful and encouraging. I too will share my experiences as I go thru this. Hopefully it will help others in this situation.
Hi, I live in South Africa. The sun is always shining here and there is always the risk of developing skin cancer if you have a light skin. I developed a growth on the lower eye lid of my right eye. I do not know if it is cancer or just a benign growth but I went on a high nutrition diet for about two months and the growth have shrunk noticeably. I would like to share the diet with you. The soup Ingredients: - two handfuls of Chopped broccoli, one chopped onion (purple), two bags of green tea, two pinches of mixed herbs, two sticks of cut celery, Two handfuls of frozen and crushed spinach or kale, half a table spoon of crushed garlic, Three shakes of black pepper, seven shakes of turmeric, two tablespoons full of apple cider vinegar (with the mother), one bag of white onion powder soup for flavour, a hand full of cooked red speckled beans and a handful of cooked mince meat. Just add all the ingredients in a pot, add boiling water and switch the stove on high till the water boils. Then lower the heat until the water simmer, Let the soup simmer for an hour. The soup is now ready. I would only drink water in the morning. At 12h00 I would start eating the soup. There will be about two helpings that you can eat in the 12h00 to 18h00 time frame. I also ate a fruit salad every day in the 12h00 to 18h00 time frame. (Note: Apparently turmeric reduces the effect of some chemotherapy drugs and thus should not be taken during chemotherapy.) During the rest of the week I would also eat food that contains vitamin D like avocado’s, mushrooms, liver and eggs in the 12h00 to 18h00 time frame. It seems to be working for me, maybe it will also work for you. I pray to God the Father in the name of Jesus Christ that the cancer will not return. Amen. I would also like to share the following six videos with you about salvation and two videos about evolution: Evolution vs. God th-cam.com/video/uc_W9VtzJ0A/w-d-xo.html DESTROYING Evolution In Under 3 Minutes th-cam.com/video/sWecPwrQv2c/w-d-xo.html Watch the Holy Spirit Work in Her Heart (Very Moving) th-cam.com/video/iBEoI2u6kII/w-d-xo.html Fearing The Lord, God’s Discipline & Sharing The Gospel th-cam.com/video/dES5WW66Mro/w-d-xo.html A Clear Gospel Presentation by Pastor Steven Anderson - How to go to Heaven th-cam.com/video/IXEeMWCxyrQ/w-d-xo.html The Plan of Salvation th-cam.com/video/PmkhRMPvt_0/w-d-xo.html How to Get Saved th-cam.com/video/ajWdkuvrT6s/w-d-xo.html The Truth About Hell (Selected Scriptures) th-cam.com/video/AVzbh_dLq3s/w-d-xo.html Best regards Chris “For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life”. John 3:16 (King James Version Bible) Jesus Christ is the only begotten Son Of God the Father.
thank you for sharing your story - this video will help others in the future - it helped me
thank you for the info .