Thank you so much for the update. I may be one of the latest people who asked for an update. I will have my bladder removed on March 29th and your update is a precious gift. It gives me hope. Wishing you the best.
Hi ❤ I am also a muscle invasive bladder cancer survivor it was 5 years on 1/7/24!! I also have a neo bladder and I feel the same. I like to put it behind me and people can’t tell by looking at me. Although I can’t say that cancer doesn’t stay a worry for me down the road. It’s so hard once you’ve had it to simply not worry anymore about it. The sensation is also much different for me now too. I feel like I can detect it better now that it’s been a while but by the time I feel something I know I’ve waited too long. I am also pretty continent once in a while I may leak if I don’t wake up at night. I can’t go on my own anymore however I need to self cath. You look great!! 😊 I wish you all the best and good health from here out.
@@PedroVier-ew9uy Yes I do. It’s not bad at all. I’ve grown used to it. The biggest thing is infection risk and making sure you always have supplies with you.
Thank you for the update! Your videos helped me get though my bladder cancer diagnosis and treatments over the past 3 years. Glad to know you are doing great.
I’m glad you’ve adjusted to this. Humans are very adaptable - that’s for sure. I wish you a life with no more cancer issues. I’m also happy that you have a wife and family. That’s excellent having a support system like that. Living alone going through this would be worse I believe. Thank you for making this update. You look very healthy, and that’s important.
It would have been very difficult without a support system. I like to think that I'm a strong person, but I don't know if I could have made it through either chemo or the operation/recovery without my wife. For chemo, I think it might have been enough to have somebody drive me there and back, and maybe check-in on me and visit every couple days. But my anxiety made it difficult for me to function sometimes, and I'd be worried about that. For the operation and recovery, I think it's important to have somebody helping you on a daily, or multiple-times daily, basis. And also driving you to/from medical appointments.
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!
Hi Kyle I’m going threw the nightmare now, I passed blood 4 weeks ago , I’m 41 years old, I had a ultrasound 2 days ago and I seen a 1cm lump on the screen in my bladder, I’m having the Cystoscopy a week tomorrow to investigate, I currently have a tingling pain in the bladder area, and I’m waking in the night to pee at least every 2 to 3 hours, I’m really nervous and scared, I wish you the best in the future. And thank you for your videos .. Martin
I have watched all nine of your videos and am totally impressed with your honesty and willingness to share the details of your experience. For me you are a brave individual who has provided an important insight and understanding to the process of treating bladder cancer. I have learned a lot from what you have had to say in the videos. I am bit (76) older and have started to face new normal quite often with each new impairment. Iḿ more interested in functionality rather than normality . I had my first TURPBT in 2012 which was for low grade tumors and recently had a TURP showing a progression to high grade tumors and now am scheduled for BCG. Probably i will be a candidate for a Cystectomy sooner than i think. so for me your videos were incredibly helpful in understand the operation itself. I wish you the very best long and happy life. Thank you for producing these videos. By the way i was glad to see you finally smile in video number 9
Thank you for the kind words, Donald. I’m sorry you’re going through this, and that you have been for such a long time. On one hand, you’ve been having to go through treatments for over a decade, but on the other hand, you’re still here and alive to take those treatments!
Thankyou for these videos, i will be doing most of what you spoke about in these videos series, and you have helped me to "calm down" and be more realistic, thankyou.
I’m on here too bc m daddy is having his removed soon as well. Daughters everywhere worried about their daddy’s. How is your father? Mine is a worried seeing him scared is killing me
I'm 6 years post diagnosis with T2 and fortunately I'm doing pretty well. I haven't had to make the decision as to what procedure I would elect to have when the time comes. Your vid is very helpful and encouraging Thanks for a heart felt story.
Thank you for sharing your experience. I've been watching your videos. I will have my bladder and prostate removed on May 19th 2022. You've helped me tremendously! Thank you!
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.
What a great explanation thank you ! All Urologist and Nurses should watch this as a educational Training video. They saved your life but a little extra info would of helped you with the unexpected, such as dealing with side effects. So thank you for your perspective and life experience.
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!
So happy to see your update. My family is at the start of this diagnosis for one of my siblings. So many emotions. Worst part is the waiting for exact diagnosis, treatment options ect.
I was diagnosed around a year ago with g3 t1 bladder cancer and had 3 turb and 2 rounds of bcg but my body started shutting down and i got a nasty reaction to the bcg, Ended up in hospital for 7 days over xmas with suspected sepsis that they though might of happened via the catheters i was getting for the bcg treatment.They then though about giving me mitomycin but at a mdt meeting they declined that option and instead told me best option is a RC,Had my RC 4 weeks ago now and hoping all goes well at my next follow up appointment in 2 weeks time. I went for a ileal conduit and found that the best option for me although i do not really think that everything that has happened to me has really hit home yet.
@Taylor-ix3om I was 50 when I had it done and my surgeon advised me to get the ileal conduit. I had the option for neo bladder also but I was told it has more complications and I live in the North of England and I would have to go down the country to have it. I also don't like the idea of self catheterization etc.
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.
Thanks for sharing your 'journey' thru bladder cancer. I am scheduled the end of Sep 2022 for a cystoscopy to look.....my urine stream is not painful or difficult, just slow. Might be the prostate (minor elevation in PSA, though double the trigger point) but my routine Urologist wants to look at my bladder.
Hi! I’m so appreciative of your videos… I’m scared to look at them all as going through some stuff and I think I may have the same issue you have suffered. But I’m happy to see you doing well! I’m very scared and condone your bravery. If I am going through what I am (there’s testing in two weeks) then I might start up my own series too! It seems like this was your mental therapy approach and I’m going to do the same. Best wishes! And I know I’m a year late. Happy new years! I’m 25 :)
@destinygatez7068 I hope it’s not cancer. But if it is, remember what bravery is. Bravery is being scared of something but doing it anyway. Every person battling cancer is just doing what they have to do to survive-mostly because there is not an alternative. It is what it is. You do what you have to do. If I were you, I would not watch my other videos or research too much until you have a diagnosis. It’s not worth the mental anguish to worry about what could be. It will be what it is. No amount of research is going to change it and you’ve already done what you need to do right now-which is arrange testing/examination to get a diagnosis. These videos definitely were my therapy! Making them helped me gather and process my thoughts. They were like a form of introspective meditation for me. They gave me something to think about and gave me motivation to get up and make something. They also helped me salvage a lasting benefit out of a horrible situation. Best of luck to you in a couple weeks!
Thanks so much for making these videos and sharing your story and for doing the 5 year update. Loads of helpful information for so many of us and it's good to see you looking relaxed. I'm just in the process of getting diagnosed and learning my way. By the way, are they your pinball machines ? :) Pretty cool, if so!
Yeah, I've got four of them crammed into that little room! There's another just off camera. Keeping them running is my hobby. There was a brief time when I was trying to figure out what my wife should do with them if I wasn't around anymore. But I'm still here! And happily I've stopped making cancer videos and gotten back to making pinball videos on my other channel. I'm glad you're on your path. I hope that you get back to the things that you enjoy soon.
thanks for sharing this first of all..my father(62) had the surgery a couple of days ago, still in ICU now but ok medically. the main concern at this point, to be honest, is the psychological one as all of the reviews i found online from patients emphasized a lot on this. And due to Covid measures no relative is allowed in hospitals still..only phone talks.and he will stay for about 2 weeks there.also in my country the patient care as listening to his needs and concerns is known to be quite defective..
I'm sorry to hear that. Aside from the cancer coming back, incontinence was my biggest fear going into the operation and was one of the things that I asked my urologist/surgeon about many times before making the decision. It seems that continence is a bit fragile. My urologist assured me that I would be continent, but he also is reluctant to do any cystoscopies now because they can affect continence.
Hi! Fir me surgery (March 29) was a success. They removed the bladder and prostate and created a neobladder. Pathology of the bladder revealed that the cancer had not spread. In fact, they found no evidence of cancer in the bladder itself. Quite a success. I still use the catheter, which will be removed on Monday, March 25. My recovery is progressing well and fast. I am very aware that I will have to check myself regularly for at least 5 more years. May I ask this question: how easy / difficult / traumatic is the self catheterization? Any ideas or comments? Thank you very much.
Excellent news! It felt like a great weight was lifted from my shoulders when I got my pathology results. I'm very fortunate that I have never had to catheterize. My doctor never even showed me how to do it. His advice to me was to urinate on a schedule and not try to extend my capacity (don't stretch it out). The bigger the neobladder, the harder it is to empty with your core muscles--and if you can't empty it yourself, then you have to catheterize. You can start working on your core muscles now. You may be able to push with your stomach muscles and see the urine move in the Foley catheter. Might help to breathe out sharply. Don't worry if it doesn't move much. It will work better once the catheter comes out.
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.
My Family doctor saw polyp inside my bladder after ultra sounds, he said nothing to worry but he said he will do again ultra sound next year...should i got second opinion? I was worry if it's tumor or Cancer. What I realize I use rest room frequently and I can't hold my pees. What kind of test should I do?
I am not a doctor, so I will not try to give medical advice. I did not have those symptoms with my cancer, but those are symptoms that a urologist would probably be interested in. If it were me, I would see a urologist. You should never feel bad about getting a second opinion! Doctors are fallible, just like the rest of us, and you need to be your own advocate when it comes to your health.
My immediate response was going to be that I haven’t changed anything about my lifestyle. I still have the same level of activity (not much) and eat the same diet (not great) as I did before I was diagnosed. But of course I have made some changes. I stopped smoking. I never smoked much-maybe two packs a month at the height in my 20’s then one pack a month in my 30’s-but I quit outright as soon as I was diagnosed because I can’t think of anything else that could have caused the cancer. I still see my oncologist and urologist once or twice a year-even now that I’m 5 years out. I see my primary care doctor about once a year too and that’s something I hadn’t done for years until I was diagnosed. I take medication for my heart and medication to prevent kidney stones (both are results of the treatment), whereas I hadn’t routinely taken any medication years before diagnosis. I don’t think you can change your diet or take a miracle pill and prevent cancer or recurrence. But I do know that seeing your doctors regularly can help detect cancer sooner, and taking general care of yourself will help your quality of life during and after the treatment.
@@bladdercancerandtreatment Thank you for the reply brother, just saw it. I had upper tract bladder cancer. Had chemo in October then surgery to remove kidney in January and now my cancer has recurred in my bladder. Yesterday had 4 tumors removed by turbt and now I’m waiting for pathology. I’ve been exercising more and losing weight but I’m going with what the doctors say for medical management as well.
@@dada_giriit’s amazing reading this. Feels like so long ago but it’s just a few months. I went back for a second turnt and there was more cancer again so those were scrapped out. Then got 6 bcg treatments and passed the following cystoscope. 3 more maintence bcg then passed cysto again. 2 weeks ago had my first CT scan, no sign of disease :) Next week is last of 3 maintenance treatment then another cysto in mid April. Thanks for asking. Hope you’re well 🙏❤️
Great videos, I wish more people who have been through this would post their experiences like you have. I'm in the UD decision phase at the moment. Do you have any digestive problems due to resection of the small intestine?
I did not have any noticeable digestive problems. Biggest impact along those lines was, and still is, that the muscles I use to hold in gas are the same or similar muscles that I use to hold in urine, so I can't pass gas as casually as others might. Also, the feeling I have when my bladder is full is pretty much the same feeling I have when I have gas pressure, because they're both intestinal pressure, so sometimes I can't tell the difference between needing to pass gas and needing to pee. If I try to pass gas then there's a chance that my bladder is actually full and I'll start urinating instead of passing gas. Probably not what you were asking about...but it affected me more than I would have thought. Maybe I'm just especially gassy! But no impact to what I eat or how much I eat. The type of urinary diversion was a nerve-racking decision and I feel for you. The biggest potential impact in my opinion is continence. If I were you, I would ask your surgeon what percentage of his patients are continent during the day and during the night, what their age groups are, what separates those that are continent from those that are not, and whether they think you will be continent or not. I'd base my decision off of that information.
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
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.
Kyle, Im 38 and ive been diagnosed with bladder cancer. I don’t know the grade yet but they saw a pretty large tumor on my bladder. I’m living a nightmare because my wife is currently stage 4 breast cancer and I have two young kids. I’ve tried looking everywhere for individuals who are as young as us but not many sources available. If possible I’d like to message you and ask some questions.
@sickomode1960 I'm sorry to hear about you and your family's situation. If you have any questions that I might be able to answer, please ask them here so others can benefit from the conversation. You might also look into the Bladder Cancer Advocacy Network online forum: www.inspire.com/groups/bladder-cancer-advocacy-network/
Did you have any back pain or felt irritated bladder from the tumors? Also did your urologist know what type of tumor or if it was invasive or non invasive after the cystoscopy?
@sickomode1960 No, I had no pain or symptoms aside from small amount of blood and occasional clot in my urine. Back pain sounds more like a kidney issue to me, but I'm not a doctor. My urologist did not provide a diagnosis after the initial, flexible, in-office cystoscopy. I was not diagnosed until the second, rigid, out-patient cystoscopy and TURB. The in-office cystoscopy seemed to just be confirmation that there was an issue. The second was to figure out how extensive the issue is and get it graded.
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
@@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%.
@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.
None. I noticed slightly rusty colored urine once. Then a few weeks later I saw distinct blood in my urine along with a bit of tissue (looked like a small blood clot or scab).
I don't remember if the first scan used contrast or not, but most of my scans have used it. Briefly stopped using contrast when my kidney function was questionable, but otherwise most of them have used contrast.
I was hoping somebody else might chime in, but for me, no regrets. I would make the same decision again. My quality of life is closer to normal than I ever imagined it would be. I suspect I may have trouble as I get older, if my core muscles get weaker, but for now I am very happy.
@RobinPhillips I can pee either way now, but it was easier to sit down when I was first learning how to isolate and control the muscles. The muscles I use to hold in urine are very close to the muscles that I use to hold in a fart, so sometimes it's easier just to have a seat and let it go. But I have no problem peeing standing up or sitting down.
Thank you so much for the update. I may be one of the latest people who asked for an update. I will have my bladder removed on March 29th and your update is a precious gift. It gives me hope. Wishing you the best.
It’s been awhile how’d it go?
I'm about to have mine removed in about 10 days. Been spending time reading and watching videos here.
Hi ❤ I am also a muscle invasive bladder cancer survivor it was 5 years on 1/7/24!! I also have a neo bladder and I feel the same. I like to put it behind me and people can’t tell by looking at me. Although I can’t say that cancer doesn’t stay a worry for me down the road. It’s so hard once you’ve had it to simply not worry anymore about it. The sensation is also much different for me now too. I feel like I can detect it better now that it’s been a while but by the time I feel something I know I’ve waited too long. I am also pretty continent once in a while I may leak if I don’t wake up at night. I can’t go on my own anymore however I need to self cath.
You look great!! 😊
I wish you all the best and good health from here out.
Do you self catheterize every day:? how it is?
@@PedroVier-ew9uy Yes I do. It’s not bad at all. I’ve grown used to it. The biggest thing is infection risk and making sure you always have supplies with you.
@@suzy7773 Sorry to ask, how old are you? and supplies, you mean the catheter itself?
@@suzy7773 Will you have to self catheterize from now on or will your ability to pee return did your urologist say?
@@Taylor-ix3om Yeah I have to self cath for the rest of my life
Thanks bro.. 4 th treatment of bcg diagnosed 2 months ago…. You showed me there’s light at the end of the tunnel.. blessings😊
Thanks for your sharing. I was just diagnosed with bladder cancer and have a battle ahead.
You look great. The picture of good health.
Thank you. I am starting the neo-bladder life and I feel better knowing some unknowns. You saved me sir.
Thank you for the update! Your videos helped me get though my bladder cancer diagnosis and treatments over the past 3 years. Glad to know you are doing great.
I’m glad you’ve adjusted to this. Humans are very adaptable - that’s for sure. I wish you a life with no more cancer issues. I’m also happy that you have a wife and family. That’s excellent having a support system like that. Living alone going through this would be worse I believe. Thank you for making this update. You look very healthy, and that’s important.
It would have been very difficult without a support system. I like to think that I'm a strong person, but I don't know if I could have made it through either chemo or the operation/recovery without my wife. For chemo, I think it might have been enough to have somebody drive me there and back, and maybe check-in on me and visit every couple days. But my anxiety made it difficult for me to function sometimes, and I'd be worried about that. For the operation and recovery, I think it's important to have somebody helping you on a daily, or multiple-times daily, basis. And also driving you to/from medical appointments.
Thank you very much for your very informative videos.
May you always be cancer free as long as you live.
God bless you🌹🌹🌹
Thanks for sharing your story . I am about to follow the same path .
Your a strong man !!
Thanks for the insight into your journey
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!
Hi Kyle
I’m going threw the nightmare now, I passed blood 4 weeks ago , I’m 41 years old, I had a ultrasound 2 days ago and I seen a 1cm lump on the screen in my bladder, I’m having the Cystoscopy a week tomorrow to investigate, I currently have a tingling pain in the bladder area, and I’m waking in the night to pee at least every 2 to 3 hours, I’m really nervous and scared, I wish you the best in the future.
And thank you for your videos .. Martin
How are you doing right now?
hey, hope you're ok, I was in the same place 9 months ago. Good luck, God bless,
I have watched all nine of your videos and am totally impressed with your honesty and willingness to share the details of your experience. For me you are a brave individual who has provided an important insight and understanding to the process of treating bladder cancer. I have learned a lot from what you have had to say in the videos. I am bit (76) older and have started to face new normal quite often with each new impairment. Iḿ more interested in functionality rather than normality . I had my first TURPBT in 2012 which was for low grade tumors and recently had a TURP showing a progression to high grade tumors and now am scheduled for BCG. Probably i will be a candidate for a Cystectomy sooner than i think. so for me your videos were incredibly helpful in understand the operation itself. I wish you the very best long and happy life. Thank you for producing these videos. By the way i was glad to see you finally smile in video number 9
Thank you for the kind words, Donald. I’m sorry you’re going through this, and that you have been for such a long time. On one hand, you’ve been having to go through treatments for over a decade, but on the other hand, you’re still here and alive to take those treatments!
Thankyou for these videos, i will be doing most of what you spoke about in these videos series, and you have helped me to "calm down" and be more realistic, thankyou.
My father is having his bladder removed this Tuesday. Thank you for your videos and glad your feel pretty good.
I’m on here too bc m daddy is having his removed soon as well. Daughters everywhere worried about their daddy’s. How is your father? Mine is a worried seeing him scared is killing me
I'm 6 years post diagnosis with T2 and fortunately I'm doing pretty well. I haven't had to make the decision as to what procedure I would elect to have when the time comes. Your vid is very helpful and encouraging Thanks for a heart felt story.
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!
Your videos are well done and very informative. Thank you for sharing your experiences and I’m so glad you’re doing so well.
Thank you for sharing your experience. I've been watching your videos. I will have my bladder and prostate removed on May 19th 2022. You've helped me tremendously! Thank you!
I wanted to add, I'm so grateful you're doing well. Again, Thank you for the update.
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.
Tough SOB Thanks for sharing and for your honesty.
Thanks for the update and sharing your journey. Much appreciated.
What a great explanation thank you ! All Urologist and Nurses should watch this as a educational Training video. They saved your life but a little extra info would of helped you with the unexpected, such as dealing with side effects. So thank you for your perspective and life experience.
Thank you so much for sharing.
Well done, thank you for this update
God bless you brother and thank you for blessings us wiyh your journey and for a lot of ur about to start I’m one who appreciates the information 🙏🏾
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!
So happy to see your update. My family is at the start of this diagnosis for one of my siblings. So many emotions. Worst part is the waiting for exact diagnosis, treatment options ect.
I'm glad you are doing so good!
I was diagnosed around a year ago with g3 t1 bladder cancer and had 3 turb and 2 rounds of bcg but my body started shutting down and i got a nasty reaction to the bcg, Ended up in hospital for 7 days over xmas with suspected sepsis that they though might of happened via the catheters i was getting for the bcg treatment.They then though about giving me mitomycin but at a mdt meeting they declined that option and instead told me best option is a RC,Had my RC 4 weeks ago now and hoping all goes well at my next follow up appointment in 2 weeks time. I went for a ileal conduit and found that the best option for me although i do not really think that everything that has happened to me has really hit home yet.
@@kuposceptre May I ask how old you are and why you chose the ileal conduit? I’m struggling to decide which option is for me.
@Taylor-ix3om I was 50 when I had it done and my surgeon advised me to get the ileal conduit. I had the option for neo bladder also but I was told it has more complications and I live in the North of England and I would have to go down the country to have it. I also don't like the idea of self catheterization etc.
Excellent Video, incredible helpfull video Great courage and well explained.
thank you for sharing your story - this video will help others in the future - it helped me
Great video , very informative and it probably has helped a lot of folks and will help more in the future. Thanks
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.
Thanks for sharing your 'journey' thru bladder cancer.
I am scheduled the end of Sep 2022 for a cystoscopy to look.....my urine stream is not painful or difficult, just slow. Might be the prostate (minor elevation in PSA, though double the trigger point) but my routine Urologist wants to look at my bladder.
I'm glad you're scheduled for a cystoscopy. You don't want to delay diagnosis and potential treatment.
Hi! I’m so appreciative of your videos… I’m scared to look at them all as going through some stuff and I think I may have the same issue you have suffered. But I’m happy to see you doing well! I’m very scared and condone your bravery. If I am going through what I am (there’s testing in two weeks) then I might start up my own series too! It seems like this was your mental therapy approach and I’m going to do the same. Best wishes! And I know I’m a year late. Happy new years! I’m 25 :)
@destinygatez7068 I hope it’s not cancer. But if it is, remember what bravery is. Bravery is being scared of something but doing it anyway. Every person battling cancer is just doing what they have to do to survive-mostly because there is not an alternative. It is what it is. You do what you have to do.
If I were you, I would not watch my other videos or research too much until you have a diagnosis. It’s not worth the mental anguish to worry about what could be. It will be what it is. No amount of research is going to change it and you’ve already done what you need to do right now-which is arrange testing/examination to get a diagnosis.
These videos definitely were my therapy! Making them helped me gather and process my thoughts. They were like a form of introspective meditation for me. They gave me something to think about and gave me motivation to get up and make something. They also helped me salvage a lasting benefit out of a horrible situation.
Best of luck to you in a couple weeks!
Just found your channel today. I hope your still doing well
Brave ...man big ups to you..
Thankyour for these video's. They are a big help.
Thanks so much for making these videos and sharing your story and for doing the 5 year update. Loads of helpful information for so many of us and it's good to see you looking relaxed. I'm just in the process of getting diagnosed and learning my way. By the way, are they your pinball machines ? :) Pretty cool, if so!
Yeah, I've got four of them crammed into that little room! There's another just off camera. Keeping them running is my hobby. There was a brief time when I was trying to figure out what my wife should do with them if I wasn't around anymore. But I'm still here! And happily I've stopped making cancer videos and gotten back to making pinball videos on my other channel.
I'm glad you're on your path. I hope that you get back to the things that you enjoy soon.
thanks for sharing this first of all..my father(62) had the surgery a couple of days ago, still in ICU now but ok medically. the main concern at this point, to be honest, is the psychological one as all of the reviews i found online from patients emphasized a lot on this. And due to Covid measures no relative is allowed in hospitals still..only phone talks.and he will stay for about 2 weeks there.also in my country the patient care as listening to his needs and concerns is known to be quite defective..
I have the neo bladder. It's been 5 years now and I'm still incontinent
I'm sorry to hear that. Aside from the cancer coming back, incontinence was my biggest fear going into the operation and was one of the things that I asked my urologist/surgeon about many times before making the decision. It seems that continence is a bit fragile. My urologist assured me that I would be continent, but he also is reluctant to do any cystoscopies now because they can affect continence.
You’re so brave!!
Hi! Fir me surgery (March 29) was a success. They removed the bladder and prostate and created a neobladder. Pathology of the bladder revealed that the cancer had not spread. In fact, they found no evidence of cancer in the bladder itself. Quite a success. I still use the catheter, which will be removed on Monday, March 25. My recovery is progressing well and fast. I am very aware that I will have to check myself regularly for at least 5 more years. May I ask this question: how easy / difficult / traumatic is the self catheterization? Any ideas or comments? Thank you very much.
Excellent news! It felt like a great weight was lifted from my shoulders when I got my pathology results. I'm very fortunate that I have never had to catheterize. My doctor never even showed me how to do it. His advice to me was to urinate on a schedule and not try to extend my capacity (don't stretch it out). The bigger the neobladder, the harder it is to empty with your core muscles--and if you can't empty it yourself, then you have to catheterize. You can start working on your core muscles now. You may be able to push with your stomach muscles and see the urine move in the Foley catheter. Might help to breathe out sharply. Don't worry if it doesn't move much. It will work better once the catheter comes out.
@@bladdercancerandtreatment thank you so very much! Your video series have been a blessing. Un abrazo grande
thank you for the info .
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.
My Family doctor saw polyp inside my bladder after ultra sounds, he said nothing to worry but he said he will do again ultra sound next year...should i got second opinion? I was worry if it's tumor or Cancer. What I realize I use rest room frequently and I can't hold my pees. What kind of test should I do?
I am not a doctor, so I will not try to give medical advice. I did not have those symptoms with my cancer, but those are symptoms that a urologist would probably be interested in. If it were me, I would see a urologist. You should never feel bad about getting a second opinion! Doctors are fallible, just like the rest of us, and you need to be your own advocate when it comes to your health.
Great to see you doing so well Kyle. Do you have any advice about life story changes that may prevent recurrence? Thanks
My immediate response was going to be that I haven’t changed anything about my lifestyle. I still have the same level of activity (not much) and eat the same diet (not great) as I did before I was diagnosed. But of course I have made some changes. I stopped smoking. I never smoked much-maybe two packs a month at the height in my 20’s then one pack a month in my 30’s-but I quit outright as soon as I was diagnosed because I can’t think of anything else that could have caused the cancer. I still see my oncologist and urologist once or twice a year-even now that I’m 5 years out. I see my primary care doctor about once a year too and that’s something I hadn’t done for years until I was diagnosed. I take medication for my heart and medication to prevent kidney stones (both are results of the treatment), whereas I hadn’t routinely taken any medication years before diagnosis. I don’t think you can change your diet or take a miracle pill and prevent cancer or recurrence. But I do know that seeing your doctors regularly can help detect cancer sooner, and taking general care of yourself will help your quality of life during and after the treatment.
@@bladdercancerandtreatment Thank you for the reply brother, just saw it. I had upper tract bladder cancer. Had chemo in October then surgery to remove kidney in January and now my cancer has recurred in my bladder. Yesterday had 4 tumors removed by turbt and now I’m waiting for pathology. I’ve been exercising more and losing weight but I’m going with what the doctors say for medical management as well.
@davcache how are you nowadays?
@@dada_giriit’s amazing reading this. Feels like so long ago but it’s just a few months. I went back for a second turnt and there was more cancer again so those were scrapped out. Then got 6 bcg treatments and passed the following cystoscope. 3 more maintence bcg then passed cysto again. 2 weeks ago had my first CT scan, no sign of disease :)
Next week is last of 3 maintenance treatment then another cysto in mid April. Thanks for asking. Hope you’re well 🙏❤️
Great videos, I wish more people who have been through this would post their experiences like you have.
I'm in the UD decision phase at the moment. Do you have any digestive problems due to resection of the small intestine?
I did not have any noticeable digestive problems. Biggest impact along those lines was, and still is, that the muscles I use to hold in gas are the same or similar muscles that I use to hold in urine, so I can't pass gas as casually as others might. Also, the feeling I have when my bladder is full is pretty much the same feeling I have when I have gas pressure, because they're both intestinal pressure, so sometimes I can't tell the difference between needing to pass gas and needing to pee. If I try to pass gas then there's a chance that my bladder is actually full and I'll start urinating instead of passing gas. Probably not what you were asking about...but it affected me more than I would have thought. Maybe I'm just especially gassy! But no impact to what I eat or how much I eat.
The type of urinary diversion was a nerve-racking decision and I feel for you. The biggest potential impact in my opinion is continence. If I were you, I would ask your surgeon what percentage of his patients are continent during the day and during the night, what their age groups are, what separates those that are continent from those that are not, and whether they think you will be continent or not. I'd base my decision off of that information.
Godbless you🙏🕊️👍♥️
You look amazing too!
I feel your pain
I’m having by bladder removed after which I will fast to prevent recurrence.
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
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.
Kyle, Im 38 and ive been diagnosed with bladder cancer. I don’t know the grade yet but they saw a pretty large tumor on my bladder. I’m living a nightmare because my wife is currently stage 4 breast cancer and I have two young kids. I’ve tried looking everywhere for individuals who are as young as us but not many sources available. If possible I’d like to message you and ask some questions.
@sickomode1960 I'm sorry to hear about you and your family's situation. If you have any questions that I might be able to answer, please ask them here so others can benefit from the conversation. You might also look into the Bladder Cancer Advocacy Network online forum:
www.inspire.com/groups/bladder-cancer-advocacy-network/
Did you have any back pain or felt irritated bladder from the tumors? Also did your urologist know what type of tumor or if it was invasive or non invasive after the cystoscopy?
@sickomode1960 No, I had no pain or symptoms aside from small amount of blood and occasional clot in my urine. Back pain sounds more like a kidney issue to me, but I'm not a doctor. My urologist did not provide a diagnosis after the initial, flexible, in-office cystoscopy. I was not diagnosed until the second, rigid, out-patient cystoscopy and TURB. The in-office cystoscopy seemed to just be confirmation that there was an issue. The second was to figure out how extensive the issue is and get it graded.
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
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.
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.
Did you have any symptoms prior to bladder cancer aside from the blood?
None. I noticed slightly rusty colored urine once. Then a few weeks later I saw distinct blood in my urine along with a bit of tissue (looked like a small blood clot or scab).
@@bladdercancerandtreatment thank you for sharing.
@@bladdercancerandtreatment also, when you had your ct scan done was it with contrast or without?
I don't remember if the first scan used contrast or not, but most of my scans have used it. Briefly stopped using contrast when my kidney function was questionable, but otherwise most of them have used contrast.
@@bladdercancerandtreatment thanks for your response. How accurate is a cytology test?
Has anyone had any regrets of getting this surgery.
I was hoping somebody else might chime in, but for me, no regrets. I would make the same decision again. My quality of life is closer to normal than I ever imagined it would be. I suspect I may have trouble as I get older, if my core muscles get weaker, but for now I am very happy.
So you never get a full night's sleep?
@Samson-EC That's correct. I haven't slept for more than 2-3 hours at a time since my surgery.
@@bladdercancerandtreatment Thanks very much for your time. I wish you well..
I have high grade cis and I think I want to choose to die rather than have a bag. It's not the quality of life I want.
Must you pee standing up or sitting down ?
@RobinPhillips I can pee either way now, but it was easier to sit down when I was first learning how to isolate and control the muscles. The muscles I use to hold in urine are very close to the muscles that I use to hold in a fart, so sometimes it's easier just to have a seat and let it go. But I have no problem peeing standing up or sitting down.
Hey how are you doing buddy god bless❤❤❤