Caregiving for a Loved One With Bladder Cancer

About 95 percent of bladder cancers are classified as “transitional cell” (also called urothelial carcinoma), meaning that the cancer (carcinoma) arises mostly from the cells that line the inside of the bladder. Transitional cell carcinomas can also arise from cells in other places along the urinary tract, including the inner lining of the kidneys, the ureters and the urethra.

In approximately 70 percent of transitional cell carcinomas, the cancer is contained within the superficial lining of the bladder. The remaining cases are classified as “muscle invasive,” meaning that the cancer cells have spread beyond the inner lining of the bladder into the muscle layer or has spread outside the bladder.

Treatment Options

The course of treatment for bladder cancer is often determined after consultations with a urologist, a medical oncologist and a radiation oncologist. Each doctor brings a perspective unique to their specialty.

Non-invasive bladder cancer

If the cancer cells are non-invasive (contained within the lining of the bladder), the treatment approach is decided with a number of factors in mind, including what was seen on the diagnostic imaging tests and other health issues the person may have.

Treatment approaches for non-invasive bladder cancer are typically a combination of the following:

• Transurethral resection (TUR). A small electrified wire loop is passed through a cystoscope into the bladder and is used to remove the tumor.

• Partial cystectomy. The portion of the bladder that contains cancer cells is removed.

• Bacille Calmette-Guerin (BCG). BCG is an intravesical (delivered directly into the bladder) therapy that causes an immune reaction against cancer cells within the bladder.

• Chemotherapy. Chemotherapy drugs are sometimes used as an intravesical treatment; they include mitomycin C, thiotepa, doxorubicin, gemcitabine and valrubicin.

Advanced bladder cancer

Surgery

If the cancer has invaded the muscle layer of the bladder wall or beyond, a surgical procedure called a radical cystectomy is often performed, in which the entire bladder and surrounding lymph nodes are removed. This surgery also includes the removal of the prostate in men and the uterus, ovaries and part of the vagina in women.

With the removal of the bladder, the surgeon will also create new ways for urine to be expelled from the body. Several options exist; the chosen option depends on the person’s individual circumstances and their personal preferences.

Chemotherapy

Systemic (whole body) chemotherapy, often used in conjunction with a radical cystectomy, is designed to destroy cancer cells that may have spread beyond the bladder. Common drug combinations include MVAC (a mix of methotrexate, vinblastine, doxorubicin and cisplatin) and GC (gemcitabine plus cisplatin).

Systemic chemotherapy is most often administered prior to surgery (neoadjuvant), but is sometimes given after surgery (adjuvant). When given prior to surgery, chemotherapy can shrink tumors, making surgery an easier process and increasing its change of success. Systemic chemotherapy is also the primary treatment for bladder cancer that is not treatable with surgery or is metastatic (has spread from the bladder to other organs).

Radiation Therapy

In certain situations, people with muscle-invasive bladder cancer are given the option of radiation therapy as an alternative to radical cystectomy. Radiation therapy is most commonly given in combination with low-dose systemic chemotherapy. The chemotherapy makes the tumors more sensitive to the radiation treatment.

Immunotherapy

Many cancer cells carry “checkpoint” proteins that prevent the immune system from effectively attacking tumors. Certain immunotherapies, known as “checkpoint inhibitors,” allow the immune system to bypass these blocks.

There are four checkpoint inhibitors currently approved by the U.S. Food and Drug Administration (FDA) for the treatment of people with urothelial carcinoma that is locally advanced or metastatic: atezolizumab (Tecentriq), nivolumab (Opdivo), pembrolizumab (Keytruda) and avelumab (Bavencio). (Keytruda), durvalumab (Imfinzi) and avelumab (Bavencio).

Antibody-drug conjugate

Antibody-drug conjugates work by combining a chemotherapy with an antibody that seeks out cancer cells.

• In December 2019 the FDA approved enfortumab vedotin-ejfv (Padcev) for the treatment of urothelial carcinoma that has progressed after chemotherapy and immunotherapy. In July 2021, the approval was expanded to include treatment of urothelial carcinoma that has progressed after at least one treatment regimen.

• In April 2021 the FDA approved sacituzumab govitecan-hziy (Trodelvy) for the treatment of locally advanced or metastatic urothelial cancer that was previously treated with chemotherapy and immunotherapy.

Targeted Therapy

Targeted therapy focuses on specific molecules and cell mechanisms thought to be important for cancer cell survival and growth, taking advantage of what researchers have learned in recent years about how cancer cells grow.

In April 2019, the FDA approved erdafitinib (Balversa) for the treatment of locally advanced or metastatic bladder cancer that has an FGFR3 or FGFR2 genetic alteration and that has progressed after treatment with a chemotherapy regimen containing either cisplatin or carboplatin.

All cancer treatments can cause side effects. It’s important that side effects are reported right away so that your loved one’s health care team can help manage them. It’s important to remember that not all people being treated for bladder cancer experience all of these side effects, and people may experience side effects not listed here.

General side effects of bladder cancer treatment can include digestive tract symptoms (nausea, vomiting, diarrhea, loss of appetite) and fatigue. Your loved one’s health care team can suggest ways to manage these side effects should they occur.

Side Effects of Chemotherapy

With intravesical chemotherapy, the most common side effects are bladder irritation and painful urination. As very little of the medicine is absorbed into the bloodstream, other more general side effects are uncommon.

The side effects of systemic chemotherapy depend on the type and dose of the therapy given and the length of time it is used, and can include:

• Fatigue
• Nausea or vomiting
• Hair loss
• Increased risk of infection (from having too few white blood cells)
• Easy bruising or bleeding
• Peripheral neuropathy (numbness or tingling in hands and feet)

Side Effects of Immunotherapy

Immunotherapy travels through the bloodstream, helping to prompt an immune response. Sometimes the immune system may attack healthy cells as well as cancer cells, and certain side effects may be experienced, including fatigue, decreased appetite, skin rash and digestive tract symptoms.

Side Effects of Radiation Therapy

Changes to the skin are the most common side effects of radiation therapy. Those changes can include dryness, swelling, peeling, redness and blistering. If a reaction occurs, your loved one should contact a member of their health care team so the appropriate treatment can be prescribed. It’s especially important to contact the health care team if there is any open skin or painful area, as this could be sign of an infection. Infections can be treated with an oral antibiotic or topical antibiotic cream. Radiation therapy can also lead to bladder irritation and diarrhea. Rarely, it can lead to incontinence and damage to the lining of the bladder.

Q: My brother has bladder cancer. I want to help with caregiving, but I live far away. What can I do?

A: Even from a distance, you can provide ongoing emotional support to your brother and to his primary caregiver. It is sometimes easier for people to talk about difficult topics over the phone than in person, so be willing to have in-depth and serious conversations. You can also help coordinate medical appointments (and send reminders to your brother and his caregiver about those appointments), provide verbal updates to other family members, and share information on how your brother is feeling (if he agrees) in an on-line journal such as CaringBridge.

Q: How does HIPAA affect my ability to talk to my loved one’s health care team?

A: The Health Insurance Portability and Accountability Act (HIPAA), enacted in 1996, gives people greater access to their own medical records and more control over how their health information is used. Information about your loved one’s health care condition or treatment can be shared with you in their presence. Your loved one can also sign a consent form allowing information to be shared with you without them being present.

Q: What can my loved one expect after treatment?

A: After treatment, your loved one will be closely monitored by their health care team, who will check to make sure the cancer has not returned. The specifics of the monitoring depend on the treatment they were given and often include physical examinations, imaging tests and routine blood and urine tests. If their bladder has not been removed, a cystoscopy (a minimally invasive procedure that allows the doctor to see the inside of the bladder) may also be performed.

For people with a urinary “diversion” created after the removal of the bladder, follow-up care may include urine tests to check for infection, assessing and fixing any problems with urination control and checking for changes in kidney function through blood tests and imaging tests.