My five things about invasive bladder cancer are really more about
Radical Cystectomy. The reason for that is that when I was diagnosed with "invasive" (meaning the cancer has gone through the protective inner lining and spread into the muscle of the bladder), it was return of cancer for me. I origingally had non-invasive. Because I knew there was a chance that my bladder cancer would come back, I did a lot of research in order to be prepared for whatever action I needed to take.
My list is more about men, given that's my personal experience, but some parts pertain to both.
1
. Radical Cystectomy is the Gold Standard of treatment for muscle invasive bladder cancer. It gives you the highest chance of survival over other treatments for muscle invasive (stage 2 and stage 3) bladder cancer. While you may think that losing your bladder is a terrible thing, those of us who have had the surgery are here to assure you that it not such a bad thing. If the cancer is in the muscle of the bladder, you want it out as soon as possible. The sooner it is out, the higher the probability that the cancer will be gone for good.
2.
There are three primary types of diversion techniques. Neobladder is when a segment of your intestine is used to make a new bladder that is hooked up to your original plumbing. This is closest thing to what you have now.
Indiana pouch is when a segment of your intestine is used to make a new bladder but a pathway is made through your navel (hidden) or a bit off to the side and you use a tube (catheter) to drain it. The third alternative is an
ileal conduit where no pouch is created and your ureters are connected to small segment of intestine that is used to create a stoma that you connect an external bag. Research the options to make your preference but given what the doctor finds, you may not really have a choice once surgery is underway. Give your doctor your first, second, and third preference but be prepared. The good news is that a very high majority of people are very happy with the diversion they have. There are pros and cons to each.
3.
Men will have their prostate removed at the same time as the bladder because there is an extremely high probability of cancer cells getting to the prostate from the bladder. There is a nerve sparing technique that can be done (ask for it) that improves the chance of regaining erectile function. Regaining function can take from six months to three years, so you may want to plan activities prior to the surgery with the knowledge that it will be awhile after the surgery.
4.
After the surgery, you will have drain tubes and catheters. You will be on pain meds and you will most likely just want to rest. Do not succumb to this feeling. It is imperative that you walk at least twice in the morning, twice more in the afternoon, and twice more in the evening. Walking is critical to getting your intestines to wake back up start functioning normally again after surgery. Have a loved one make you walk when you don’t feel it. The sooner you are walking and the more you are able to do it, the sooner you will get out of the hospital.
5.
If you get a neobladder, it takes time to learn how to use it. Do kegel exercises prior to surgery and after you get out of the hospital. Search the site for the word “kegel” to learn more about what that is. You will be using your pelvic floor muscles to empty your neobladder and to gain control. It takes some time to regain daytime continence (couple of months) and a bit longer for nighttime continence after you get your catheter removed. Don’t get frustrated, just keep doing the exercises. When you first get the catheter out, you will have no control. Use pads, made specifically for men, as they help. At night, you will want to use the pads in addition to the Depends (or other brands) type underwear for extra absorbency. There are also external catheters for men that can be used at night. These are called condom catheters and can be purchased online or specialty pharmacies.
BONUS: If you have had prior problems with enlarged prostate, you are going to find not having the bladder and prostate to be wonderful. You won’t have to get up as often at night and you won’t have to go so often during the day either.
"T" equals Stage.
CIS – very early, high grade, cancer cells are detected only in the innermost layer of the bladder lining
Ta – the cancer is just in the innermost layer of the bladder lining
T1 – the cancer has started to grow into the connective tissue beneath the bladder lining
T2 – the cancer has grown through the connective tissue into the muscle
T2a – the cancer has grown into the superficial muscle
T2b – the cancer has grown into the deeper muscle
T3 – the cancer has grown through the muscle into the fat layer
T3a – the cancer in the fat layer can only be seen under a microscope (microscopic invasion)
T3b – the cancer in the fat layer can be seen on tests, or felt by your doctor during an examination under anaesthetic (macroscopic invasion)
T4 – the cancer has spread outside the bladder
T4a – the cancer has spread to the prostate, womb or vagina
T4b – the cancer has spread to the wall of the pelvis or abdomen
For more information about stage and grade, see:
www.cancerhelp.org.uk/help/default.asp?page=2703
Mike