Special Focus on Bladder Cancer – Part 5: After Treatment
There was a lack of coordination during the post-treatment phase. The silos between the oncologist, urologist and general practitioner need to be broken down. There must be open dialogue between these three professionals in order to effectively care for these patients.
—Anonymous, family member
Follow-up care is required for people with bladder cancer to manage any long-term side effects or symptoms after treatment. This type of care includes managing side effects, monitoring individual health and ensuring that the cancer has not recurred .
I went from being a completely independent person in life with big plans for retirement to having all my plans completely altered. Bladder cancer has had a huge impact on the quality of my life. Side effects from the neobladder [reconstruction] include incontinence and pain, and having to plan our days around where there is going to be a washroom around the two-hour mark.
—Anonymous, bladder cancer survivor
At this time, little is known about the experiences of people with bladder cancer, although a study from the United Kingdom suggests that individuals coping with bladder cancer have worse experiences than those being treated for other types of cancer . Common experiences reported after radical cystectomy include recuperating after surgery, learning to manage incontinence, and adjusting to a “new normal.” 
The same study also examined quality of life after cancer treatment, both for people who did undergo surgery and those who did not. Results of this study showed that quality of life 1 year post-treatment was variable, ranging from unchanged to worse. Unfortunately, most people reported having a worse quality of life 3 years post-treatment. However, by years 5 and 7, overall patient quality of life improved, despite the persistence of some concerns .
I don't want to go anywhere. I started isolating myself because I was changing my pants 2–3 times a day. Incontinence has really affected my life.
—Anonymous, bladder cancer survivor
Depending on the needs of the person, follow-up care can be provided by specialists (such as urologists or oncologists) or family physicians . As healthcare systems evolve to provide more effective and sustainable follow-up care, healthcare providers should talk to their patients about the best and most appropriate care for them.
Of all cancers, bladder cancer has the highest recurrence rate. Non-muscle invasive bladder cancer has a recurrence rate of 60% to 70% . Bladder cancer is most likely to recur within the first 2 years after treatment, meaning that follow-up care is critical for early detection of recurrence. The frequency and type of monitoring depends on a person’s risk, but the tests are similar to those used to diagnose bladder cancer. These include physical examinations, cystoscopic examination and imaging tests .
Bladder cancer has a high reoccurrence rate, especially for my type [superficial bladder cancer], so I have scheduled follow-up visits and have been fortunate to live in a province with excellent healthcare.
—Blair P., bladder cancer survivor
A study in the United States showed that showed that within 10 years of their initial cancer diagnosis, three-quarters of people with bladder cancer will experience recurrence or progression of their cancer, or that they will die from it .This highlights the importance of quality follow-up care.
In addition to appropriate follow-up care, effective cystoscopy techniques need to be used to help decrease the risk of bladder cancer recurrence. Multiple studies have shown that the use of fluorescence cystoscopy or narrow band imaging during a cystoscopy helps the surgeon more readily identify bladder cancer. This increased ability to detect bladder cancer means that more of the cancer is removed when compared to surgery using white light. As a result, people who underwent fluorescence or narrow band imaging cystoscopy had lower rates of recurrence than people who had cystoscopy with white light [7–9].
Worry about recurrence and survivorship among people with bladder cancer also is of concern. Despite the recurrence rates, there are thousands of bladder cancer survivors. Steps can be taken to reduce stress associated with the fear of recurrence, including the following:
- recognizing and addressing negative feelings;
- engaging in a support group;
- practicing stress management through engaging in self-care, participating in enjoyable activities, spending time with family and friends, and exercising regularly;
- being informed about the chances of recurrence and associated symptoms;
- engaging in follow-up care; and
- making healthy lifestyle choices .
Supportive care can help people meet the physical, practical and emotional challenges of bladder cancer. Recovering from bladder cancer is different for each individual, and recovery depends on a number of factors, including treatment type.
Depending on the type of treatment, bladder cancer can affect one’s self-esteem and body image, and it can result in loss of bladder control (incontinence), problems with urination and fertility problems; it can even cause changes in sexuality and sexual function . It is important for people to have access to the appropriate healthcare service to help improve their quality of life and address long-term side effects of treatment.
Patients need people outside of their family to talk to, whether it be a social worker, a chaplain or just another ear. These patients have real questions and fear about end-of-life care, which they may not feel comfortable disclosing [to] family members.
—Anonymous, family member
Some people facing advanced bladder cancer may need to turn to palliative and end-of-life care. Their healthcare team will attempt to address their symptoms, improve their quality of life and support them and their families. While palliative care can and should be provided to people with cancer throughout their cancer journey, it becomes particularly important during end of life.
Palliative care strives to help individuals, families and caregivers in a number of ways:
- addressing physical, psychological, social, spiritual and practical issues, along with expectations, needs, hopes and fears;
- coping with loss and grief;
- treating all active medical issues;
- preventing new issues from occurring; and
- promoting opportunities for meaningful and valuable experiences, and for personal and spiritual growth.
End-of-life care is the care provided to people in the last weeks of their lives. It incorporates the principles of palliative care and can also help people prepare for and manage end-of-life choices and the dying process.