Educate Yourself
Knowledge is power and there is no exception when it comes to understanding your bladder cancer diagnosis. That said, bladder cancer is a particularly complex disease, so reading about it may seem overwhelming. This is normal—there is a lot of information to digest.
If you do find yourself getting bogged down with the nuances, take a step back and write down your questions or sources of confusion.
In the end, you should gain knowledge to your satisfaction. Your foremost goal is to be an informed patient so you can make good choices, not to become an expert.
Prepare for Appointments
Planning for your many healthcare provider visits and tests is critical. Following these steps can help your appointments go smoothly:
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Record all your appointments, tests, and surgery dates in a calendar. Arrive on time (if not a bit early) to your appointments and bring a partner or trusted loved one. Bring a list of all your medications (including vitamins or over-the-counter supplements), allergies, medical problems, and family history to each medical visit. Carry a notebook of questions and concerns around with you and periodically write in it when another thought pops into your mind. Remember, anything goes here—every question or worry is worthy. Investigate financial issues related to your health care so you can properly budget.
Also, try your best not to feel overwhelmed by the sheer number of healthcare providers you will see. Here is a quick breakdown so you can best understand each practitioner’s unique role in your care:
Urologist: A surgeon who performs your bladder cancer removal and monitors you with cystoscopy. Medical oncologist: A healthcare provider who treats cancer with medicine, like chemotherapy. Radiation oncologist: A practitioner who provides radiation therapy. Pathologist: A healthcare provider who looks at your cancer cells under the microscope. These findings help dictate your treatment plan. (You will likely not meet your pathologist. )
Other members of your team will likely include a nurse practitioner, physician assistant, psychologist, financial coordinator, and/or social worker.
Share Your Story
How and when you tell others about your diagnosis and/or experiences is wholly up to you. For instance, some people may choose to detail their healthcare provider appointments and cancer treatments in a blog for people to read. Others may write in a personal journal or talk regularly with a close friend. Still some may dodge well-meaning questions from friends, family, and/or colleagues, preferring to keep their diagnosis private.
All of this is OK—being diagnosed with bladder cancer is a big deal. Telling others can be a tricky and delicate matter, especially when it comes to disclosing your diagnosis to family members.
Your children or other loved ones may want to protect you and take a front seat to your care, which is often well-intentioned, but can also be taxing and stressful for you.
Move forward with the healthcare team you are most comfortable with. Of course, seeking a second opinion is often a good idea and cannot hurt.
Find Support
The physical and emotional toll of being treated for bladder cancer—surgery, chemotherapy, and follow-up appointments—can be draining, intensive, and very time-consuming. Everyone needs some help and support.
Other means of support include seeing a professional counselor who has experience treating people with cancer. In fact, sometimes talking to a stranger is easier than opening up to a friend or family member.
Discuss Quality of Life Issues
For muscle-invasive bladder cancer, the standard of care is a radical cystectomy with urinary reconstruction. While treating the cancer is a healthcare provider’s main focus, it’s important to address quality of life issues that will arise after the surgery, the two most common ones being:
Sexual problemsUrinary problems
Erectile dysfunction can be a side effect with radical cystectomy in men, as the nerves that are involved in a man’s erection are located at the base of the prostate, which is removed in a radical cystectomy.
In women, achieving an orgasm may be affected if the nerve bundles that line the vagina are damaged. Sexual arousal in women may be affected too if the clitoris loses some of its blood supply during surgery.
Depending on the type of urinary diversion your surgeon and you decide on after radical cystectomy, there can be a number of quality of life issues that arise, including:
Stress of caring for the skin around your stoma Emptying your urostomy pouch, a small collection bag located outside the body, or putting a catheter into your stoma Sexual functioning with a urostomy pouch Medical problems that arise from urinary reconstruction, urine leaks or blockages
The good news is that all of these issues can be addressed, but may take some patience and resilience on your part. One solution is an enterostomal therapy nurse, who can teach you how to properly care for your stoma and the surrounding skin.
