If you have advanced bladder cancer, your doctors may suggest palliative care. It's a type of specialized medical care that can help ease the symptoms and stress of a serious illness like invasive or metastatic bladder cancer.
Research shows that palliative care has a slew of benefits for patients with bladder cancer. It reduces symptoms, makes it easier to function, and may even improve spirituality. Palliative care isn't just for you, it can also help your cargiver, too.
But despite all of these benefits, only about 4 out of 100 people with bladder cancer use it. That's because it's often linked to hospice, or end-of-life care, says Eduardo Bruera, MD, chair of the Department of Palliative, Rehabilitation and Integrative Medicine at the University of Texas MD Anderson Cancer Center in Houston.
Both patients and their cancer doctors can confuse palliative and hospice care, but they are not the same. That's one reason many cancer centers have renamed palliative care as supportive care. "This way, we emphasize that our role is to support the whole trajectory of the disease," says Bruera.
You'll see a whole team of health care professionals, including a palliative care doctor, nurses, nutritionists, and social workers. They will all work together to help manage your physical symptoms, and boost your overall mental and emotional health.
How Palliative Care Helps With Advanced Bladder Cancer
Palliative care is especially helpful if you have muscle invasive bladder cancer, a more advanced form of the disease.
Palliative care centers often have chaplains on hand to provide spiritual care and guidance. And social workers can help you sort through legal forms like advanced directives and health care powers of attorney.
Can Palliative Care Help Ease Bladder Cancer Symptoms?
Research shows earlier palliative care may ease symptoms and help overall. In fact, with advanced bladder cancer starting palliative care early may help you:
- Have less severe symptoms
- Get less fatigue and anxiety
- Feel better overall
- Have a better quality of life
"Ideally, we like to send patients right when they start treatment, to help them cope with side effects," says Peggy Lynch, NP, a nurse practitioner at Memorial Sloan Kettering Cancer Center in New York City, who specializes in bladder cancer. "They can even start physical therapy, or take exercise classes, to help make their bodies stronger, so they can better withstand treatment, too."
Can palliative care help if I start later?
Even if you don't start early, you can benefit from palliative care at any point in your cancer journey. Unlike hospice care, it's not done solely at the end of life, when you no longer get curative treatments.
Palliative care is especially helpful for bladder cancer patients who have recently had surgery. It can help you learn to:
- Pee again after you've had part or all of your bladder removed.
- Manage and care for any external bags to collect your urine (ostomy bag).
"You often have to change your lifestyle," says Lynch. "You may need to set an alarm, so that you get up and urinate in the middle of the night, or get advice on how to travel with all of your new supplies."
How Do You Get Palliative Care for Invasive Bladder Cancer?
A good first step is talking to your doctor, or one of the nurses. They may have a palliative care team already at your cancer center to refer you to. If they don't, they'll point you in the right direction or you can find one at getpalliativecare.org.
You can get palliative care if you're hospitalized, or at a medical center as an outpatient. It's usually covered by Medicare and Medicaid, as well as by most insurance plans.
If for some reason it's not, or if it only covers part of it, a palliative care team social worker can help you figure out payment options.
What to Expect With Palliative Care for Bladder Cancer
When you go to your first palliative care appointment, you can expect to meet many different specialists.
The team will look at many angles of your life to figure out where you need the most support. They help figure out whether you need relief from physical symptoms, or social and emotional support.
They'll ask you questions about your:
- Pain
- Symptoms
- How your treatment impacts your daily life
Your palliative care team cares about any fears or anxieties you have related to your bladder cancer, too. You're an important part of your palliative care team. Let them know about your treatment goals – they can help you.
Questions to ask
You may have your own questions for the team and that's OK. Write your questions down so you dont forget to ask.
The focus of your palliative care team can help improve your overall quality of life.
"We always ask our patients what they enjoy doing, and what they want to continue to be able to do, whether it's swimming or gardening," says Brandon Sterling, PhD, APRN, an advanced practice provider access specialist in the Department of Urology at MD Anderson Cancer Center, Houston.
Body Image When You Have Invasive Bladder Cancer
Most people with muscle invasive bladder cancer need to have surgery, often a complete removal of the bladder. This is called a radical cystectomy which can:
- Challenge your self-esteem and body image
- Make it harder to pee
- Cause urinary incontinence
- Lead to sexual side effects from nerve damage
"Many men develop nerve damage that affects their ability to have an erection," says Lynch. Surgery can also damage the nerves that run along each side of the vagina, which makes it harder for women to have orgasms.
Where to find help for sexual problems
Some major cancer centers have male and female sexual health medical programs. If your treatment center doesn't have one, ask your cancer specialist to provide a referral.
"Some of my male patients find they respond really well to medications and injections to treat erectile dysfunction," says Lynch. "Women often find using a vaginal lubrication or moisturizer helps, or even pelvic floor physical therapy to strengthen their pelvic floor muscles."
A sex therapist or sexual health nurse practitioner can also offer counseling on how to talk about intimacy issues with current or future partners.
"A lot of patients also worry about being sexual with an ostomy bag," says Lynch. "But there are certain things, like fabric pouches for ostomy bags, ostomy belts, and belly bands, that can help to conceal them."
How to Lower the Risk of Bladder Cancer Recurrence
Muscle invasive bladder cancer is more likely to spread than other forms of bladder cancer.
Your cancer is most likely to come back within the first two years after bladder surgery. Although there's no way to prevent bladder cancer, you can do some things to lower your risk of it coming back.
Just keep in mind that there's no magic bullet that will prevent the return of muscle invasive bladder cancer.
"I tell all my patients that we have no control over whether or not their cancer comes back, but we can monitor them carefully to make sure that if it does, we find it early," says Lynch. "But they do have control over other things that impact their health, like diet, exercise, getting enough sleep, and staying socially engaged."
Resources for Caregivers
Muscle invasive bladder cancer isn't just hard for patients – it's difficult for their caregivers, too.
"The goal is to prevent caregivers from experiencing exhaustion and burnout," says Sterling. "What we see in the clinic is just a snapshot, while they are with our patients 24 hours a day, seven days a week."
"Caregivers are the unsung heroes when it comes to patients with bladder cancer," says Sterling. "I like to tell them that they are the experts when it comes to their loved ones' care."
Where to get support
Sterling frequently steers caregivers to the Bladder Cancer Advocacy Network (BCAN) which offers phone support for people who have questions about bladder cancer.
BCAN can also connect you to bladder cancer survivors and their caregivers, as well. You can call 301-215-9099 or email [email protected]. They also run an online support group and discussion community at inspire.com/groups/bladder-cancer-advocacy-network.
Other organizations that can provide support include:
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
Eduardo Bruera, MD, chair, Department of Palliative, Rehabilitation, and Integrative Medicine, University of Texas MD Anderson Cancer Center, Houston.
Peggy Lynch, NP, nurse practitioner, Memorial Sloan Kettering Cancer Center, New York City.
Brandon Sterling, PhD, APRN, advanced practice provider access specialist, Department of Urology, MD Anderson Cancer Center, Houston.
Bladder Cancer Advocacy Network: "Palliative Care," "Survivor to Survivor."
BJU International: "Palliative care use amongst patients with bladder cancer."
Archives of Urology: "Early Palliative Care in Advanced or Metastatic Bladder Cancer: A Retrospective Study."
Center to Advance Palliative Care: "Palliative vs. Hospice Care – Frequently Asked Questions," "What to Expect from Your First Palliative Care Meeting," "Questions to Ask the Palliative Care Team," "How Palliative Care Helps the Caregiver, Too."
Johns Hopkins Medicine: "Bladder Cancer Treatment."
Urology International: "Body Image Perception and Social Support Are Important Predictors of Quality of Life in Bladder Cancer Patients after Cystectomy with Urinary Diversion."
American Cancer Society: "Bladder Cancer Surgery," "Living as a Bladder Cancer Survivor."
Urology Care Foundation: "Muscle-Invasive Bladder Cancer: Symptoms, Diagnosis & Treatment."
JAMA Network Open: "Smoking Behaviors and Prognosis in Patients with Non-Muscle Invasive Bladder Cancer in the BeWell Study."
International Journal of Clinical Chemistry: "Association between obesity and bladder cancer recurrence: A meta-analysis."
