Bladder Cancer Support
How can I help a loved one cope with bladder cancer?
Patients with bladder cancer face a number of unique challenges. One, is that they have to confront the diagnosis of the cancer, which is not that different from any of the other cancers, but they will have to cope with this diagnosis much longer than patients with other typical solid tumors such as breast, lung, colon, or prostate, because of the natural history of the disease. They need that support because recurrences tend to be frequent, and each time the patients come into the office and they've had a couple of negative examinations, they expect that they're cured, and they're very disappointed when 8 months later, or 12 or 16 months later, they're facing another recurrence - this tends to be a repetitive cycle. What's also different for bladder cancer, is that when patients face the decision to undergo a radical cystectomy for removal of the bladder, the urinary tract has to be reconstituted, and some of them will require an ostomy. There are lots of issues with body image, having a permanent ostomy, a permanent collection device associated, that these couples actually have to deal with. Finally, patients who pick some of these newer surgical alternatives, with the creation of a new bladder that is stitched down into the urethra, and reconnected to the urethra, have to relearn how to urinate because the bowel is not made to store or evacuate urine. They have to learn how to catheterize themselves initially, and they have to learn how to void by straining. A lot of the attention has been directed to men, who undergo cystectomy, and it's clear that these men face a very high risk of having either partial or total erectile dysfunction, or sexual dysfunction. More recently, sexual function in women undergoing cystectomy has also been addressed, and there certainly is significant sexual dysfunction in women who undergo cystectomy as well. Those needs have to be anticipated, addressed and attended to.
How will the diagnosis of bladder cancer affect my spouse or loved one?
Generally, the news or diagnoses of cancer, when it's given to a family member, is one of those devastating events that you would rather avoid, as it is a life changing event. With bladder cancer, first you have to deal with the fact that it's a cancer. It is malignant. It's potentially lethal. It needs careful conscientious and long-term follow up. It's a long-term commitment. Most patients, once they've had bladder cancer and understand the treatment, understand the recurrence that may be anticipated, and the possibility of progression, generally do accept it and do very well. That doesn't mean they like coming in every three months for an examination, or every week for six weeks for some a bladder treatment. however, they do accept it and generally have a good lifestyle. It's a different challenge for patients who have to have more radical treatments or have to undergo cystectomy with removal of the bladder. Those challenges deal with either having to wear an external collection device, an ostomy or a bag, having to learn how to urinate again. Both men and women who undergo these more radical procedures undergo sexual disfunction, which can also be very disruptive to some relationships.
How long does it take for a person to emotionally overcome a diagnosis of cancer?
That is different for everyone. It's certainly different between different socio-economic groups - different culture groups, different nationalities and national backgrounds. I have heard somebody say that the Italians never get over it and the Germans never accept it, so without categorizing anybody, I'd say that's involved with so many of the personal, interpersonal, family, and cultural dynamics that there is no set answer for that.
Where can I go for information on support for bladder cancer patients?
A great place for patients and their families who are working through bladder cancer and want more information on bladder cancer, would be to to visit the AUA website. The AUA is the American Urologic Association, and they have a very extensive website that will direct you into other local or regional support groups. Additionally, there is a lot of information on bladder cancer that's available on that site, including the newly updated AUA guidelines for the treatment of bladder cancer, specifically superficial non muscle invasive bladder cancer.
