Sexology. Bladder cancer impacts 83% of patients' intimate lives.

According to an OpinionWay survey for Merck, 94% of bladder cancer patients believe it is important to participate in decisions regarding their treatment. Yet, only 54% feel they actually had this opportunity. "This reflects patients' feelings: the loss of control they often express," says Lori Cirefice, president of the Cancer Vessie France association. "They say, 'I didn't have a choice, I had to do it.' It's difficult to feel like a player when only one option is offered. Yet, it's a legitimate desire for patients to be able to discuss, reflect, and involve their loved ones before committing to treatment."

“When a patient is involved, they become an active participant in their own care. They better understand the issues, accept the constraints more easily, and above all, they take ownership of their treatment. This strengthens compliance, and therefore effectiveness,” explains Professor Yann Neuzillet, urologist at Foch Hospital and professor of urology at Paris-Saclay University. “All options must be presented, including the option of not implementing active treatment or proposing treatments that may be less effective but do not affect quality of life. It's a question of respect and trust. It's up to the patient to make a choice, once they're well informed. This is what we call a shared decision.” And this dialogue shouldn't be one-way. “They must be encouraged to ask questions and express their expectations. Because that's the only way to adapt care to their lives, and not the other way around.”

Sexuality: the great forgotten aspect of the care pathway

Bladder cancer has a profound impact on patients' daily lives. The OpinionWay study reveals that bladder cancer significantly affects their quality of life: 86% of patients report fatigue that impacts their independence, and 83% feel an impact on their intimate life. However, only 12% have received appropriate care. More than half of active patients have seen their work modified, but only 57% have been able to discuss it with their doctor. Finally, while 79% report a psychological impact, 36% have received support.

"Sexuality is often the forgotten topic in healthcare. And yet, it's a major aspect of quality of life. We must dare to talk about it. Just like professional activity, which is not a luxury but sometimes a vital necessity." Another problem raised by Professor Neuzillet: a sudden break in follow-up after the most intensive treatments. "After the intensity of the care, there is sometimes a feeling of emptiness. Patients can feel abandoned, while side effects, doubts, and pain persist."

Treatments, such as radiation therapy or chemotherapy, can impact sexuality. In men, treatments can cause dry orgasms and erectile dysfunction, reports the Canadian Cancer Society. In women, infertility is one of the possible consequences of the removal of the uterus and ovaries following treatment. They may also experience pain during intercourse if part of the vagina has been removed or if the sexual organ has shrunk due to radiation therapy.

Supportive care: a little-known lever for living better with illness

Much more than just a supplement, supportive care is an integral part of bladder cancer management. "Supportive care is everything we put in place around the main treatment to make it as effective as possible and ensure the patient can experience it in the best possible conditions," explains Professor Yann Neuzillet.

Adapted physical activity, nutrition, psychological support, physiotherapy, occupational therapy… These treatments help prevent or limit side effects and improve quality of life. “A good diet, a little exercise before and after surgery, it makes all the difference. The body recovers faster, complications are fewer, and morale is also boosted.”

While they remain unevenly accessible, their effectiveness is well established. For Professor Neuzillet, it's essential to discuss them from the very beginning of the treatment process. "Once they understand what they are, patients spontaneously embrace them. Because they're better. They offer greater comfort, greater autonomy, and greater peace of mind."