Bladder Cancer - 7 - Surgery and Recovery, Part 1 (Hospital)
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- Опубліковано 26 сер 2017
- 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 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, Summer of 2017 marks my first year of remission.
My treatment spanned 36 weeks and is documented across several videos:
Week 01 Video 1 Symptoms
Week 03 Video 1 MedCeck consultation
Week 05 Video 1 Primary Care Physician consultation
Week 06 Video 1 Urologist consultation
Week 08 Video 1 CT scan/Cystoscopy
Week 09 Video 2 TURB biopsy
Week 11 Video 3 Biopsy Results (diagnosis)
Week 11 Video 3 Surgical consultation
Week 12 Video 3 Oncologist consultation
Week 13 Video 3 Chemo prep procedures
Week 13 Video 4 TURB resection/debulking and chemo port
Week 15 Video 5 Chemotherapy round 1 of 4
Week 17 Video 6 Chemotherapy round 2 of 4
Week 19 Video 6 Chemotherapy round 3 of 4
Week 21 Video 6 Chemotherapy round 4 of 4
Week 25 Video 7 Radical cystectomy and prostatectomy with neobladder
Week 27 Video 8 Post-op #1: Removed kidney stent and JP drain
Week 29 Video 8 Post-op #2: Removed foley and started urinating
Week 31 Video 8 Post-op #3: Removed SPT
Week 34 Video 8 Removed ureteral stent and chemo port
Week 35 Video 8 Returned to work
Excellent explanation! I had the exact same surgery at Keck-USC, Los Angeles in 2019. Don't wish the experience on anyone - but, of course, the alternative is worse. The neo-bladder works very well but I am in the 5% group that is unable to urinate 'normally' and must rely on a catheter about every 6 to 7 hours... No big deal. It just becomes the new normal. I have to check-in with my urologist every 6 months but other than that I have fully recovered.
Thank God for my wife. She was a fantastic support system and honestly I don't think I would have survived this life-changing process without her.
I'm 76 years old and still have a few good years left.
My heart and prayers go out to all of you who will experience this surgery in the future. Take it one day at a time and try to stay positive.
My worst experience was trying to recover from the anastesia. It was like experiencing a severe concussion. I had brain-fog to the max and it took quite quite a while to recoup my cognitive faculties.
Horrible!
Good luck to all you neo-bladder candidates. My prayers are with you. 🙏
This is not an easy procedure and you must stay positive. The mental challenge is the greatest obstacle.
ONE DAY AT A TIME!
Thank you so much for your work on creating this series. I'm now at the beginning, Stage 1, high grade. I'm being realistic and accepting the probable path of this outcome. I'm older, but in good enough shape to handle this. I hope you're still well and cancer free.
thanks for this my boyfriend had this surgery this morning, and this helped me a lot.
I had 2 tumors removed last week and found out this morning that it got into the muscle. I really appreciate you sharing your story. You don't know what it means to those of us facing these challenges.
What's next and how u find out?
I thought I passed a kidney stone last January. Went to my primary care doctor she told me not to be concerned unless I had bad pain or problems urinating. In March I started passing things that she said looked like blood clots and she ran urine and blood tests. She was still not concerned and the tests didn't show any abnormalities. I finally got a referral to see a urologist in August after passing the blood clots on a regular basis which turned out to be pieces of tumor. On the first vist I showed him pictures that I had been taking of the things I was passing and he immediately sent me for a contrast dye ct scan which showed I had a tumor about the size of a grape in my bladder. I had a follow up visit with him where he confirmed this with a camera being inserted into my urethra. I then had surgery about 3 weeks later to have it removed. In that time it had grown to the size of a lime and had a smaller tumor behind it. Unfortunately the tumor had gotten into the muscle by then. I'm in the process of having 4 rounds of chemo then I get a 4 - 6 week break before I have surgery to remove my bladder and prostate. That's the only way currently they can ensure they get all the cancer. I hope this helps
@@kevinlawson9923 was it ever microscopic and how old are you thank you for your message back I'm concerned but I'm in my 40s and I'm not sure what to do I'm too scared to get the cystocopy but I haven't seen any blood only microscope
@@kevinlawson9923 and how long do they think you had it and what were your symptoms besides blood any???
The only other issues I had was lower back pain. My best guess is this started in January of 2021. This type of cancer is very aggressive from what I was told by my urologist. I'm 45 years old and will turn 46 at the beginning of the year. I completely understand your fears. I really expected to have the tumors removed and maybe a little chemo after. I have only had 1 dose of chemo so far and I get my second one this coming Tuesday. It hasn't been as bad as I was expecting. Tired and lots of nausea but the meds they have given me have kept it under control. I would tell anyone who starts having symptoms like mine at the beginning to be persistent, don't wait. Get treated as soon as possible. If it doesn't get into the muscle you shouldn't have to have the surgery to have the bladder removed and yes I am still nervous and scared about that.
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.
fantastic videos
Mom having bladder out Tuesday. Thank you.
Hope you're still cancer free.I to under went a radical cystectomy,do to bladder and prostate cancer.This took place in 2022,you covered the whole procedure very well.I took the option of the Ilie conduit, dr said it was the better choice.It definitely was a challenge.
Thanks so much for posting these. I too have been diagnosed T2 . Knowing what to expect really helps . All one hears about is how awful this can be . The chemo had me really worried. I’m 76 so I guess I won’t have much choice about getting a stoma.
God Bless us all with this bladder cancer!
Hope u are well xx
I am now going in for my consultation for R/C next month. I will be asking about prostate sparring surgery.
Hi Folks, I'm sitting here watching this video at 1.30 at night, in the Isle of Man UK, the pain is terrible, the drugs have awful side effects, blood pressure dropping, have had two resection's (inside of bladder scraped) to try and get rid of the cancer, first op' November 2021 second 19th July 2022 besides two weeks in March and the first week of April other than that, the pain has been unbearable, bladder and prostrate removal on the 10th November, not looking forward to that, I didn't go for neo bladder because my surgeon said it was a lot more complicated and more chance of problems, leaks etc' God bless us all and all to come, amen 🙏
Hope your doing well! I've had two turbt's. First one the tumor was the size of a walnut, second turb very small. Bladder washed with chemo drug. Let me know how your doing!
@@kimnicholl2233 hi Kim, hope your getting sorted and feeling better, I had my bladder and prostrate removed I November, now have a uristomy pouch, taking some getting used to but at least the pain has gone, so are the terrible drugs, hopefully that's the end of it, God bless you and keep you safe 😊
@@majorwhite51 Thank God your pain is at bay! I am just done with second turbt. Bladder wash with mytomicin. Another cyscostopy in August. I hate them,so painful. These docs in St. louis, MO. dont give pain meds for cyscostopy. I did get hydrocodine (6 pills only) after tumor removal. They never worked anyway. Did you get the indiana pouch after bladder and prostate removal? I am glad to talk with you! My bladder cancer thing is still on going. BTW: I am from Belfast N. Ireland.
Please keep in touch!
@@kimnicholl2233 hi Kim, Norn Iron, 😂 I'm from Pordydown, after travelling round the world from LA to Hongkong and quite a few places in between, I settled in the Isle of Man, I have an external uristomy pouch, not the most pretty thing but it works and I'm getting used to it, my eldest daughter is called Kim as well, I had my first resection, down through my "Henry John" to scrape the inside of my bladder in November 2021 my second in July 2022, camera inserted many times, the pain was consent for 14 month's, razor blades wrapped in barbwire and heated in a forge before drawing it through, is a good discription of the pain, every time I had to piddle, which up to 30 times a day because I had to drink 2 to 3 litres of water per day, I nick named the toilet the torture chamber and as for the drugs, they didn't touch the sides, eventually they put me on morphine, which eased it a bit for a couple of days, then oramamorph which is twice as strong as morphine, the only thing it did was melt my brain, was walking the streets at night, until I threw all the drugs into the bin, the pain in my bladder was at least physical, after a 6 hr operation with 3 surgeons, I had my bladder etc out, after a couple of days of discomfort from the operation, it all started to calm down and I haven't had any pain since, I had tried everything under the sun from White Witches to a private clinic in London, in order to save my bladder, if I had to do it again, I would have had the bladder etc removed earlier and done without so much mental and physical pain, you will get through this Kim, a long hard road, as you and I know,
@@majorwhite51 You describe the pain very well! I am 64 and I know the Isle of Man. So beautiful! Do you have to get checked every now and then for cancer?
I am just starting my journey
Thank you for making this video. How are you doing now after over a year?
Lost On Land Again : Happy to report that I’m doing great! Physically, there’s not much difference between now and before-cancer. I’m thankful for that.
I know it has been two years but could you do an update
Any updates on him how is he doing? Is the cancer gone...
Had the same operation in Germany with the same procedure. Some months later the doctors prediction of not being able to have an erection came true. There must be a way of saving nerves on the prostate.
Thank u so much for your video i just got diagnosed with bladder cancer I have stage two and I have two more chemo sessions before they go stage it again then they're going to do the procedure that's going on with you in this video this video has been very helpful I really appreciate. Me and my wife were wondering if you could answer a question we wanted to know how your sex life is now if that's not too personal my bad was always I'm really scared about that as well!
Robert Norris My surgeons saved the nerves around my prostate, so I still get full erections and can still have sex the same as before the operation. However, without the prostate, my ejaculation is completely dry. I still have the same muscle contractions, but there is no fluid.
your 1st cystoscopy in office show anything? And us that why they had to do the 2nd in hospital to look more closely? I had to have one done today in doctors office it looked clean and couldn't find out why I am bleeding..he said in 3wks I will have to have another one in the hospital..
Tracy Gudeman I think my urologist knew it was probably cancer after the first in-office cystoscopy. My tumor was obvious to him-it showed up on my in-office CT scan, and he saw it during the in-office cystoscopy-but he didn’t tell me then. My second cystoscopy was to perform the biopsy and that’s when I got the diagnosis. The hospital cystoscopy will likely involve a rigid scope, which allows the doctor to use tools to take tissue samples or even examine the ureters that lead to your kidneys. Best of luck to you!
@@bladdercancerandtreatment thanks hun how are you doing now?
The in office cystoscopy I got to see the screen when he was doing it.. it looked clean there wasn't anything showing there but he said he wants to do another one in the hospital and I also have to get a kidney biopsy. I have same symptoms you had my urine was brick red with the blood and they also found it microscopic when it wasn't showing up visible in urine. And had protein in urine. Was worried about lupus nephritis but kidney doc. Says I do not. I do have sle lupus. Just concern they are missing something
Hey buddy! You are tough as nails!! I'm going to urologist tomorrow and am afraid i have what you have. I just had a partial thyroidectomy and soon to have total thyroidectomy. I have cancer. I also have bright red blood for a day or two that goes away and comes back later. How are you doing now?
I'm glad you're seeing a urologist and getting treatment. One step at a time. I'm pretty much back to my normal life, and I'm very thankful for that!
@@bladdercancerandtreatment Man, that is so great to hear. I mean, I really mean that. I listed to your videos and all you went through. Sounds like you have a great wife too, a good team. I went to urologist today and they too are concerned. Found blood in urine and going to do a 24 hr urinalysis, Urogram and Ultrasound. Weird question and sure your busy, but I was wondering if there was a way iI could send you a picture of something I passed in my urine a while back, I didn't think much of it at the time but now I'm thinking that it is tissue. I'm going to see if there is a way to message you direct on this. Thanks so much!
@@bladdercancerandtreatment Well I cant find a way to message it to you. Probably nothing to it anyway.
@@skipcovan2549 The tissue I passed looked like a soggy scab. I'm sorry you're going through this, but I'm glad you're seeing a specialist and on your way to figure out what what's going on. Just take one step at a time. It is what it is--and that's not to sound defeated, it's more like there's no sense dwelling on what could be or WHY it is. It just is. We need to move forward with what it is and make the best of it. Easy for me to say, I know. But that one phrase put me at ease while I was going through it. It is what it is.
If you're wanting to know whether he's doing well, just click on his name and read the message Kyle has left everyone there.
What pants did you wear home? Thanks. Hope you are doing well.
I had some pants from RonWear that had zippered openings meant for chemo ports. They worked really well for all of the catheters and tubes. I only had one pair of those though. Otherwise I wore a lot of loose-fitting pajama pants at home. No problem cutting holes in those if needed.
How expensive was this out of your own pocket?
It's going to vary greatly depending on what country you live in and your insurance situation (if applicable). I'm in the USA and I was on a PPO plan--this was before my employer switched to an HSA. Over the 8 months between diagnosis and my last post-operation visit, the total billed cost was $341,147.10 USD. My total out-of-pocket cost was $13,584.62 USD.
That was back in 2015/2016. Those figures do not count the cost of my health insurance premiums during that time.
What people should eat and drink,😢 Please don't blaaaah blaaaah too much
Only liquids until able to pass gas. Juice, broth. After that, only small amounts until able to poop. Do not eat large meals. Do not eat food that will produce gas. Walk often to help get bowels moving.