A Step-by-Step Look at Metastatic (Stage IV) Bladder Cancer

When your bladder cancer has spread beyond its starting place in the bladder to a distant part of your body, it's metastatic. It means doctors have found bladder cancer cells outside your bladder. You may also hear it called "stage IV" or "advanced" bladder cancer.

Metastatic bladder cancer may happen when cancer cells travel through your blood or lymph system to other areas of your body. The most commonly affected sites are the lymph nodes, bones, lungs, liver, and peritoneum (the membrane lining your abdominal cavity – the space that contains your internal organs).

The symptoms you have depend on which parts of your body are affected. Problems with peeing are common. When it has spread to your liver, you may have yellow skin and eyes, discolored pee, and abdominal (belly) pain. Bladder cancer in the lungs can cause trouble breathing, chronic coughing, chest pain, and voice changes. In the bones, it can cause pain and increase your risk of breaking a bone.

To find out if you have bladder cancer, your doctor will use tests such as a scope to look inside your bladder (cystoscopy), biopsy, urine tests, and imaging such as computed tomography (CT) scans or X-rays. To pinpoint where the cancer has spread, your doctor will use CT scans, magnetic resonance imaging (MRI) scans, positron emission tomography (PET) scans, bone scans, and chest X-rays.

Your doctor has many ways to treat metastatic bladder cancer. The right treatment or combination of treatments for you depends on things like your age, overall health, where the cancer has spread, and how the cells look. It also depends on your goals, which might include living as long as possible or staying as comfortable as possible. Ask your doctor about all of your treatment options and their possible side effects. Also, think about getting a second opinion from another cancer doctor. You might learn about other treatments. And you may feel more confident about the treatment plan you eventually choose.

Chemotherapy is a top treatment for metastatic bladder cancer. It uses one or more medicines to destroy cancer cells and keep more tumors from forming. A chemo regimen for advanced bladder cancer typically includes a drug that goes through your whole body rather than just your bladder. You get it in a pill or through a needle into your vein (IV) or muscle. Your doctor may also combine chemo with other treatments, including radiation therapy (radiotherapy). Radiation typically uses high-energy X-rays to destroy cancer. It can help ease or prevent symptoms, too. Sometimes, radiation works better when you get it along with chemo.

Immunotherapy can train your immune system – your body's defenses – to track down and attack metastatic bladder cancer cells. It can also help your immune system make more healthy cells that destroy cancerous ones. It uses substances made by your body or in a lab. Immunotherapy medicines for advanced bladder cancer are typically given by IV. Some people take an immunotherapy drug like pembrolizumab (Keytruda) by itself or along with a medicine called an antibody-drug conjugate. Others take an immunotherapy drug like avelumab (Bavencio) after chemotherapy.

Some cancer drugs target certain changes, mutations, or proteins in cancer cells. Known as targeted therapy, these drugs can stop cancer cells from growing and spreading while keeping damage in healthy cells to a minimum. Targeted therapy sometimes works for people with metastatic bladder cancer when other treatments don't. For example, a drug taken by mouth called erdafitinib (Balversa) may help against advanced disease that is linked with changes in a gene called FGFR3 and is still growing after treatment with other medicines, like chemo. Erdafitinib can stop the mutated gene from making proteins that help bladder cancer cells grow.

An antibody-drug conjugate (ADC) is a chemo drug combined with a drug called a monoclonal antibody. The latter is a lab-made form of an immune system protein that can attach to a precise target on cancer cells and guide the chemo drug straight to those cells. That's why some experts consider ADCs a type of targeted therapy. Some people with metastatic bladder cancer may benefit from taking an antibody-drug conjugate called enfortumab vedotin (Padcev) along with the immunotherapy drug pembrolizumab (Keytruda). You take Padcev through an IV.

Most often, doctors can't completely remove metastatic bladder cancer with surgery alone. That's why they recommend medicines first. If medicines manage to greatly shrink the cancerous tumors or cause signs of the cancer to go away, your doctor may suggest surgery to remove your bladder, called cystectomy. If this is an option for you, ask your doctor what benefits you can reasonably expect from surgery. For instance, ask if the goal is to try to cure the cancer, help you live longer, or ease or prevent your cancer symptoms. Also ask your doctor about all the risks of surgery.

Managing your pain is part of palliative care, which is care that focuses on your quality of life as you live with bladder cancer. You may get over-the-counter or prescription nonopioid medications or prescription opioid medications. In some cases, a nerve block (injection near a nerve) can numb painful areas. Your doctor may also recommend complementary tools like acupuncture, massage, physical therapy, relaxation exercises, meditation, and hypnosis.

Palliative care, also called supportive care, is a range of services that can be helpful for anyone with cancer at any time. It's not the same as end-of-life hospice care. With metastatic bladder cancer, you can take advantage of palliative care services that help ease cancer symptoms, treatment side effects, and mental health or spiritual concerns. Palliative care also can help you manage issues tied to finances, work, insurance, and legal documents like advance directives. It can help loved ones get support as needed, too. In short, it's a part of cancer care that can greatly boost quality of life.

Studies that test new treatments on people for safety and effectiveness, called clinical trials, offer hope to some folks with metastatic bladder cancer. For example, a clinical trial might be an option if FDA-approved treatments didn't work. Talk with your doctor if you're interested in joining one. Each trial has certain health-related requirements. If you qualify, you're asked to sign a consent form – have a member of the clinical trial team explain any info that isn't clear. Have your doctor review the consent form, too. It's important to set realistic expectations and learn what risks, tests, and travel are involved.

With metastatic bladder cancer, you may reach a point where all treatment options no longer control the disease well. Or, if another treatment is available, you may decide that its possible downsides – such as serious side effects or less quality of life – outweigh its benefits. If you choose to stop treatment after weighing the decision with your health care team, outside doctors, and loved ones, you can focus on maximizing your time and comfort. Palliative care is still available after you stop treatment. Eventually, you might consider hospice care, which helps manage symptoms or distress toward the end of life.

These tips may help you manage side effects of metastatic bladder cancer treatments that make eating well a challenge. If your sense of taste changes, eat cold or room-temp foods, and avoid canned products and metal utensils. Also, add more fat, salt, or sweet ingredients to meals you make. If you lose your appetite, try to eat small meals more often, limit how much fluid you drink during meals, and ask your doctor for medicine if you have nausea. If you get diarrhea, choose low-fiber foods. If you get constipation, aim to get more fiber. Drink plenty of water, too.

Every bladder cancer case is unique. Only your doctor can give you the best information about how your cancer may progress, and even that is an estimate. A survival rate gives you an idea of how many people are alive after five years with the same type and stage of cancer. For bladder cancer that has spread beyond the bladder to nearby lymph nodes or organs, the five-year relative survival rate is 40%. For metastatic bladder cancer that has spread farther, the survival rate is 9%.

There's great value and comfort in connecting with others living with metastatic bladder cancer. Joining a support group can be a great boost for your emotional and mental health. The Bladder Cancer Advocacy Network (BCAN) offers lists of in-person, online, and hybrid support group options as well as survivor-to-survivor resources and a psychosocial help line. You can also seek help at cancercare.org.