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Hi all,
I’m having my final “every-six-months” CT scan on Wednesday. It will be at about the 3 year and 4 months mark. If this one is clear, I move to annual scans. Murray!
Hi Bonnie,
Well, I can’t give you a medical opinion, of course, but, yes, there is generally a high rate of recurrance with bladder cancer, so what you say may make sense. But, it depends on many factors unique to your particular situation, which you should discuss with your urologist. Meanwhile, according to the Canadian Cancer Society:
“Of all cancers, bladder cancer has the highest recurrence rate. About 70% of people with bladder cancer will have a recurrence. Treatment helps lower the risk of recurrence. Time to recurrence is also an important prognostic factor. Tumours that recur within the first 2 years after diagnosis and successful treatment are more aggressive and have a higher chance of growing and spreading.”
Read more: http://www.cancer.ca/en/cancer-information/cancer-type/bladder/prognosis-and-survival/?region=bc#ixzz4WeK5Wqin and we have a patient guidebook for bladder preservation that you might find helpful.
Stephen
Hi Keith,
I must say that you have a pretty realistic and positive attitude, and that’s critical to success, in my opinion. I had a radical cystectomy and neobladder construction when I was 62 after a diagnosis of MIBC, which turned out to be stage 4 when the post-surgical pathology was done. I agree with DDep that 5-year survival rates are quite subjective and are shifting all the time. As for bladder preservation, it’s true that it is only used in certain cases. Yours may be one. As mentioned, we have a patient guidebook covering bladder preservation you may want to read.
In my case, I’ve never regretted the surgery. For me, it is has left me with reasonably “normal” urinary and sexual function. Sure, I have to wear a diaper at night in case of accidents, but I consider it a small price to pay.
I’ve had no experience with bladder preservation strategies, so I can’t comment on that approach, other than to echo the earlier comment that you’ll need to weigh the risks involved with any type of treatment and decide what you’re comfortable with. Whatever you decide, we’re here to support you. Feel free to ask at any time!
Stephen
Hi Derek,
Glad to hear that your bladder may be preserved! More urologists are using this strategy successfully with select patients. I don’t know if you’ve read our latest Patient Guidebook, but it deals with the bladder preservation strategy. If you haven’t downloaded it yet, here’s the link: http://forum.bladdercancercanada.org/en/facing-bladder-cancer/guidebook
Wishing you the very best!
Stephen
Hi Greg,
I love the positive attitude that you’ve developed. It can only work to your benefit. God bless you as well, and I hope you and your family have a wonderful holiday season.
Stephen
Hi Theparentys,
I agree with SJay. I also have a neobladder and would immediately see my urologist if there was blood in my urine. While it might not be from cancer, it is critical to act on it quickly to rule out any serious issues and get treatment.
Stephen
Hi Worried,
I echo everything SJay said to you, especially about 5-year survival rates. It is a statistic only and I strongly advise you to NOT focus on it. I was diagnosed with Stage IV bladder cancer and was told a very low survival rate number… lower than your father’s. For many people, that number can be devastating and can take away the most valuable tool you have for survival… a positive attitude. I decided to ignore the number I was given and am glad I did. Instead I told myself and everyone who would listen that I am going to be one of those who survive. That immediately gave me a positive outlook on the situation. Everyone here at BCC can help your father with that.
Step two is to do everything possible to achieve that goal of BEATING that statistic. For me, that mean stop smoking, eat only healthy foods, get exercise (it was gardening for me), get plenty of sleep, and reduce stress in my life. I am at 3 years post-surgery and happier and healthier that I have been for decades.
Hi Worried and Confused,
I’m glad your Father has had his surgery and that everything has gone well. As far as complications, the only thing I had after my surgery was a couple of partial blockages of the bowel. They were painful but worked themselves out after a few hours. What you will see is a tired man with lots of tubes in his abdomen. Did he have a neobladder done?
Stephen
Hi Worried and Confused,
I echo all the suggestions Mary Sue made. I have muscle-invasive bladder cancer and had my bladder, prostrate, seminal vesicles and 12 lymph nodes removed. That he doesn’t want to talk to you about it is understandable. I found it difficult to talk to my 3 kids about it too. For me, the greatest help was talking to a support person from Bladder Cancer Canada who had the same surgery. The feeling of support I got was the greatest gift I could ever have imagined. I would be more than happy to talk to your father either before or after his surgery. He needs to feel that he’ll be okay. There are many of us living with bladder cancer and leading normal, happy lives.
Stephen
Hi Greg,
I was 62 when I had my TURBT. Numerous tumours were removed at that time, which led to a lot of clotting and bleeding. I was held overnight, but went home the next day. I still had a bit of bleeding, but was fine after a few days. I had a little discomfort when urinating, but it wasn’t too bad. As I recall, I sent back to work after a week.
Stephen
Hi Dale,
I’m not sure if you’ve had your surgery by now, but if you choose a neobladder I’d be very happy to talk with you. I’ve had very positive experience with mine and am glad that it was what I chose.
Stephen
Hi Greg and Ruth,
I feel for you both, because I think the uncertainty and fear are probably the most debilitating aspects of this disease. I was diagnosed with bladder cancer in the summer of 2013 and had both my bladder and prostate removed in December of that year. So, here are some things that I learned that really helped me to cope.
First, bladder cancer detected early is very treatable. Yes, treatments are not very pleasant, but they can preserve your life and I value my life… a lot! I was very scared during my cystoscopy and the TURBT. This group of people here on this forum were my personal lifeline and their support was invaluable, especially when I realized that they had all gone through the same things and were, not only doing well, but were living normal lives and were helping others to do the same.
Secondly, I would stay off the Internet (except for Bladder Cancer Canada, of course). I was devastated by many of the things I read. Anticipation of worst case scenarios that may never happen is very disheartening. There is a lot of conflicting information out there and some of it is just plain wrong.
Finally, positive attitude, while challenging, is critical. The pathology after the surgery showed Stage 4 cancer in the bladder and also some cancer in the prostate. The oncologist told me that my 5-year survival rate was 15%. I dedicated my life to being one of that 15%. I changed everything about my lifestyle. Suddenly, I took pleasure in everything. Bumper-to-bumper traffic didn’t bother me any more. I savoured every moment of life. So, here I am… 3 years after surgery and cancer free. The doctors tell me that I just may have it beat! Medical treatments that used to terrify me have become an acceptable price to pay for health. And, I’m much healthier that I have been in decades.
Bladder cancer is not a wonderful thing, that’s for sure. But, it’s treatable and you can adapt and cope. Use your inner strength. If you have a faith, draw on it to help give your strength. Tell all your friends and family that you’re dedicated to beating this and watch how positive and supportive they can become. Most of all, come back here to us at every opportunity!
Stephen
Hi everyone,
I had my every-six-months CT scan and blood work at Sunnybrook yesterday. Results are due October 17. This will be just short of three years since my RC and neobladder and, so far, cancer free!
I wish everyone the best of results.
Cheers,
StephenHi Daryl,
I echo all the comments made above. Like you, I had never had surgery before my RC and neobladder (at age 62). The question of dealing with the idea of having major surgery is an interesting one. My dealing with it started with the diagnosis. As the other Stephen said above, keeping a very positive attitude is critical, especially before surgery. When I was diagnosed, I let everyone know immediately and told everyone not to say: “I’m so sorry.” My feeling was that having everyone sorry for me would just make me feel sorry for myself. Does that make sense?
The other thing I did was to keep my sense of humour. I joked with the porter on the way to the operating room and he laughed. It was a great way to relax. The beauty of major surgery is that one minute you’re listening to the anesthesiologist putting you under, and the next minute you wake up and it’s all over. I later had to have surgery on a hernia that developed and the idea didn’t bother me in the least.
Like those who commented before, my life is great. The cancer diagnosis was an opportunity for me to change the lifestyle I led that likely resulted in the cancer in the first place. People think it’s a bit weird when I tell them that I’m thankful for the cancer diagnosis because it inspired me to live a much healthier life. But, maybe that’s just me.
I get along great with my neobladder. If all goes according to plan, you’ll likely be continent all day. I can go 4 or 5 hours between urinations (after 3 years post-op) but nightime continence is a problem. I wear “special underwear,” as my partner calls them, every night. You’ll find that you’ll likely need a daytime nap after the surgery and should wear the pants in case you fall into a deep sleep. That’s when the neobladder seems to lack control the most for me. I have no restrictions on activity or diet, although some people have certain foods that give them bowel problems. Oh, and drinking tons of water is a requirement, as it helps keep the mucous thin. Your neobladder will continue to produce mucous, as it is a piece of bowel. At this point, the mucous production is minor for me, but it varies from person to person.
Your sex life will change, but how much it changes varies considerably. As suggested, discuss it with your doctor after you’ve recovered from surgery. With some experimentation, you may discover some amazing things you were’t aware of. At least I was never aware!
Going with the neobladder was a great choice for me. Be aware that, during surgery, the plan sometimes needs to change. It’s not the end of the world. There are many people on this forum who are living great lives with an ileal conduit.
All of us are here to help you through this experience. Please let us know if you have any questions and we’d all be happy to answer them.
Best of luck!
StephenI echo Jack’s recommendation of Dr. Nam. He did my RC and neobladder in 2013 and is excellent. It’s a bit of a long haul from Blue Mountain country, but I think it’s worthwhile to have your surgery done in a major centre like Sunnybrook.
I would recommend reading at least one of our patient guidebooks available for download on the BCC website. There’s one for RC and one for treatments of nonmuscle-invasive bladder cancer. Either way, they’re packed with a lot of information that you’ll find helpful. In addition, they’re written in everyday language that’s easy to understand.
I know it’s hard at this point, but have confidence and try to think about the positive outcome that most of here are living with. We are ALWAYS here for you every step of the way!
