I too, was recently diagnosed with bladder cancer, but unlike you, it was not muscle-invasive and I'm receiving treatment. For this reason, I don't have suggestions for you follow on the cancer path, other than to not dismiss chemotherapy (or any other treatment) until you've thoroughly explored your options. This is uncharted territory for us, and we have to learn as much as possible before moving forward. Figuratively, I refer to it as the "bladder train", and it is going to take us from where we are now, to a new place. Unlike a car that can go down any road if you change your mind, we're stuck to the confines of the rails the train is on, and we're going to be on it for the long-haul. Just be sure you're getting on the right train for you, and that you've thoroughly explored where it's going and how it will affect your life.
Since I can't give you any more advice on a radical cystectomy, I'll move on to talking to you about you.
I'm self-employed and still plan to work for a while. I'm in my mid-50's and not quite ready to hang it up yet. Now, if I was you and growing tired of my job on the police force, I'd either consider a desk job for 18 months, or would get the hell out of there as fast as possible! You've done your time and you have the retirement door right in front of you. Go on, git! I cannot stress enough that it needs to be about "you" now, and that you're going to need to focus on caring for yourself before others, and learn to love yourself more than ever. Plan to hire good people to help you with your rentals, and view it as another medical expense. It's deductible, anyway!
If you're anything like me, it has and will continue to be a devastating, emotional rollercoaster. Surround yourself with the best friends and family you have, and let them know what you're going through. You'll quickly sort through the ones that can handle the news, or not. Be prepared for your journey as much as possible and be kind to yourself, and ask lots of questions before you get on the train.
Please take some of my positive energy if you need it. It's not there every day, but today, I have some to spare.
You have certainly done your research and are asking good questions. Although I have not had a radical cystectomy, I do know a lot of people who have. And they do have good lives and adapt well to the "new normal."
Your choice of USC is an excellent one and the doctors there may be able to provide good answers to your questions. A neobladder is more problematic with females than with males often resulting in permanent incontinence or hypercontinence. This is one topic to have a long discussion with your urologist/surgeon about. I always advise patients such as you to go to a place that does LOTS of these surgeries and has a LOT of experience with cases such as yours. USC is just such a place.
This surgery can be done either robotically or with open surgery, depending on the situation and the expertise of the surgeon. Your questions about a hysterectomy and post-surgery sexuality are also questions that you need to discuss with the surgeon. There are options about how much non-bladder tissues/organs need to be removed and, again, this depends on your particular situation. But an open discussion about your needs and wishes needs to be had. Often a brief course of chemotherapy is prescribed prior to radical cystectomy to ensure that any spread outside the bladder is caught. This would not be as bad or as debilitating as what your sister had and, if prescribed, would be a good start to getting rid of this.
Radical cystectomy is major surgery and the recovery time is long. But it is easier if you start out in good physical condition which you must be in due to your job. A good mental attitude and determination are also on your side. I know of patients with neobladders (male) who drive race cars, run businesses, ski, and scuba dive. Also know of females with Indiana pouches who travel internationally, scuba dive, and are very active.
You will also read on this forum and others that generally patients adapt and are happy with whatever diversion they have. You will also.
Because of the major nature of the surgery and the long recovery time this might be a good time to consider retirement if it is possible. You have enough other activities to occupy you and this would remove a bit of the pressure on your mind. You might with to explore the reports from other members here on the Forum if you haven't already under the topic "Muscle Invasive Bladder Cancer."
You will get through this and do well.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Procedure: Transurethral resection of bladder (TURBT)
Tumor Site: Multiple locations, including right lateral wall and neck Histologic
Type: Urothelial carcinoma, invasive
Histologic Grade: High-gradeTumor
Configuration: Solid Muscularis Propria
Presence: Muscularis propria is present
Lymphovascular Invasion: Absent Tumor
Extension: Tumor invades muscularis propria
Additional Pathologic Findings: Patchy chronic cystitis
Pathologic TNM StagePrimary Tumor: Invasion into muscularis propria (pT2)
TNM STAGE Your Value pT2
Microscopic Description Your Value Specimen
1 - Bladder tissue contains invasive high-grade urothelial carcinoma with invasion into the lamina propria, but not the muscularis.
Specimen 2 - Bladder tissue contains invasive high-grade urothelial carcinoma that invades into the muscularis propria.
Specimen 3 - Bladder tissue contains invasive high-grade urothelial carcinoma and carcinoma in situ. Tumor invades into the lamina propria. Muscularis is not present.
Specimen 4 - A small fragment of bladder tissue contains urothelial carcinoma. Due to specimen size and orientation, the presence of invasion cannot be adequately assessed
I lost my sister to colon cancer last year and I am the exact age she was when she passed away. I am shying away from Chemo/Radiation due to the horrible side effects that she experienced and I would rather have a quality of life than what she went through. She suffered from neuropathy, continuous nausea, and just miserable until she passed away. I would rather let the cancer run its course than go through that.
I also researched a lot of information and that the chemo/radiation has a very low percentage of adding survivability to my cancer and Immunotherapy had even less effectiveness for bladder cancer once it invades the muscle. I just don't want to lose my Thyroid or kill other systems that are currently working and really worried about killing my kidneys.
I am or was very active when I was diagnosed but currently on weight restrictions due to the TURBT and the amount of muscle that was removed to get the tumors. I am a police officer and I'm worried about carrying 21 pounds around my waist (duty belt weight) once I have the neobladder surgery and was wondering how long it took people to recover from the surgery and actually get back to being active. I am also wondering how anyone else deals with pressure on the abdomen. My duty belt put enough pressure on my bladder that I always felt I had to urinate all the time. I'm concerned that I won't be tolerating the pressure on my abdomen muscles after the surgery.
I also own vacation rentals and I want to be able to continue to do landscaping, maintenance and cleaning in my houses when this is all over. My business is seasonal and opens up on April 15 for the season. I already have bookings coming in and I want to be as active as possible during this time.
I am only 18 months out from retirement from Law Enforcement and I can file to be medically retired. I really don't have the love for the job anymore and I am OK with checking out of Law Enforcement since I have been in it for 25 years but wanted to get some perspective on how well other people live with their neobladders. I currently have to drop all gear to go to the bathroom and it is very inconvenient when I go to a call and my bladder keeps me from focusing on what is happening. Fortunately, I work in a small town and calls are not non-stop. Most of the time, I try to make a pit stop before responding to the call as long as it's not a violent call or bad crash.
I'm still not sure that I can even have the neobladder since I am still in the first stages of getting in contact with someone who is good at doing the surgery on females, how well it is tolerated, and how they are doing several months after the surgery. I am looking at going to USC in CA since they are well recommended.
I am also a diver and want to get back in the ocean as soon as possible after the surgery. What is the current time frame for healing after this surgery? How invasive is the surgery? Will I have to have a complete hysterectomy? Am I opened up or how is the surgery performed? Does anyone have a semi normal sex life or is the urge completely gone? I've read through a lot of the forums but didn't see some of the answers to my questions.
I just want to have a quality of life versus what happened to my sister who never got off her couch after chemo and radiation. I have a strong faith and I am not afraid to die but I just don't want to be tortured on that road.
Any answers that you can provide would be awesome. Just trying to get prepared mentally and physically for this.