Long-term fatigue, concentration problems, fear of the disease returning, depression and concerns about fertility. They are examples of difficulties that men can experience after treatment for testicular cancer. Nursing specialist Daniëlle Zweers wants to get to the bottom of these matters sooner in the consulting room. “Then we can also try to do something about it in time,” says our Nurse of the Year in the research category.
“I used to be an alpha male, now a tame lamb.” This patient statement makes clear what the effects can be of treatment for testicular cancer, which usually involves surgical removal of a ball. The testes produce the male sex hormone: testosterone.
Insecurity
“In fact, this hormone is the man’s engine,” says Daniëlle Zweers (35). “Often the testicle that remains is able to take over the production of the removed ball, but not always. If insufficient testosterone is present, patients can experience a lot of inconvenience. This can result in severe fatigue, depression and sexual problems such as decreased sex drive in some patients.”
Aftercare
Testicular cancer is rare. In our country, about 800 men are told that they have this disease every year. Within the medical oncology department of the UMC Utrecht, an average of fifty new patients are treated each year. In addition, approximately 250 men report to the hospital for aftercare, the so-called follow-up. They then meet Danielle. She is a nurse specialist in medical oncology within the imaging and oncology division.
Scans
Daniëlle: “As a nurse specialist I am responsible for both the medical and the nursing part of the treatment and follow-up. During the follow-up, my work is divided into two parts. Firstly, I check on the basis of, among other things, scans, blood results and the conversation about the medical history whether the cancer has not returned. Fortunately, that is usually not the case: more than 95 percent of patients are cured of testicular cancer.”
Return to society
Daniëlle continues: “My other task is to guide the patient and his relatives in returning to society. How does reintegration into work or training proceed? Does the patient experience any complaints as a result of the treatment? Some patients not only have a testicle removed, but also require chemotherapy or radiotherapy. As a result, the patient may still experience symptoms for some time after the treatment.”
Mental health problems
Possible complaints are whistling and ringing in the ears (tinnitus), tingling in the hands and feet (neuropathy) and cold, numb fingers (Raynaud’s phenomenon). Daniëlle: “But also think of psychological problems such as fear, sadness and uncertainty about the future. In addition, complaints can arise in the field of sexuality and fertility. These are sometimes of great influence in an existing relationship, but also in entering into new relationships. How and when do you tell a potential sexual partner that you have one ball? This can lead to feelings of insecurity.”
Earlier and better
The efforts of Daniëlle and the research team to which she belongs to identify these types of treatment effects at an early stage and to do something about them, have contributed significantly to her title ‘Nurse of the Year’. The award is an initiative of the Nursing Advisory Council of the UMC Utrecht. “I would like us to be able to support these patients earlier and better. It is important that they feel the freedom to raise their concerns with their healthcare providers. Because let’s be honest: it’s quite difficult to bring up your sexual problems in the doctor’s office, for example.”
Utrecht Symptom Diary
How does Danielle want to achieve this? She explains: “In our hospital we have been working with the Utrecht Symptom Diary (USD)† With this, the patient indicates which complaints he or she experiences as a result of the disease and the treatment. Based on the results, you can draw up a treatment plan together with the patient and then evaluate its effect. But the USD in the basic variant does not match the complaints experienced by patients with testicular cancer. This is a special group: mostly young people who struggle with specific problems. Together with colleagues, I took the initiative to adjust the USD for this patient group.”
Research request
Daniëlle is part of the uro-oncology group of the UMC Utrecht. This group, the USD platform and the Adolescents and Young Adults (AYA) team submitted a research application to the national AYA Young and Cancer Care Network, which is committed to age-specific care for young people with cancer. The application was approved.
Always featured
Daniëlle: “Under my supervision, nursing science students subsequently conducted a literature study, presented a questionnaire to care providers and patients and also interviewed patients. This has resulted in items that we want to add to the USD. The top 3 are fears about the return of illness, problems with sexuality and concerns about fertility. These and other established topics should soon be discussed in the USD as standard. Otherwise, these issues may remain undisclosed, with the result that we cannot provide the best possible treatment and support. We want the patient to be given the opportunity to indicate what he or she would like to talk about. It is also our goal that the USD can be used by other centers that treat patients with testicular cancer.”
Bang
What could that look like in healthcare practice? Daniëlle: “Take the patient who is so anxious that the cancer will return, that he can no longer function normally and therefore has serious concerns about the future of his family and his role in it. A further analysis of that fear can help to arrive at meaningful interventions. This includes information about the risk of disease recurrence. And discussing a worst case scenario if the cancer does come back, which happens in very rare cases. This can often be very helpful. Sometimes, in addition to this fear, traumas from the past can also play a role. Specialized psychological help can then be a good idea.”
care of tomorrow
Daniëlle is pleased that more and more nurses at the UMC Utrecht are given and seized the opportunity to conduct scientific research. “While working in healthcare, you run into problems that you can often directly translate into a research question. With research you contribute to improvements for the care of tomorrow.”
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