Team for cancer in the lower urinary tract in children

Contact details

  • Contact person: Anna Sahlqvist, coordinator/ Paediatric Specialist Nurse, Astrid Lindgren Children’s Hospital, +46-8 123 709 20,

  • Responsible specialist: Jakob Stenman, Paediatric Surgeon / Urologist, +46-8-123 700 00,

  • Responsible specialist: Michael Gubanski, Radiation Oncologist, +46-8-123 700 00

  • Responsible specialist: Niklas Pal, Överläkare, Paediatric Oncologist, +46-8-123 700 00         

For care providers

Referrals are directed to: The Paediatric Urology Outpatient Clinic, Astrid Lindgren Children’s Hospital Q2:03, 17176, Karolinska University Hospital

As member of the ERN, eUROGEN, the team can offer advice including consultation with experts at other European caregivers.

Briefly about the diagnose group

Cancer in the lower urinary tract in children is rare and only affects about 1 child in Sweden yearly. The most common form, rhabdomyosarcoma of the bladder, prostate, vagina or outer genitalia often presents with symptoms of urinary retention, haematuria or a visible tumour in the genital region. The possibilities for curative treatment are often good and it is important to minimize the negative effects of the treatment.

Rhabdomyosarcoma in the lower urinary tract in children

Rhabdomyosarcomas are divided into embryonal and alveolar sub-types, with certain differences in treatment protocols and prognosis. When this disease occurs in the lower urinary tract in children, treatment has traditionally consisted of cytotoxic chemotherapy in combination with radical surgery and external beam radiotherapy. The survival in this group is generally over 80%, but the treatment itself has, in many cases, caused significant sequelae for the patient.

A new treatment strategy has been developed in order to avoid the mutilating effects of radical surgery, where brachytherapy is utilized in combination with organ-sparing surgery, to deliver powerful radiation therapy to a small and precisely defined area. This decreases the need for radical surgery, without compromising the efficacy of the treatment. This treatment strategy, which is only available at a few other centres in Europe, has been utilized at the Karolinska University Hospital since 2004. With this new type of treatment, radical surgery can be avoided in most cases, thus avoiding a potential life-long disability secondary to partial or complete removal of the urinary bladder or injury to the nerves in the genital region. 

The new treatment strategy is based on cytotoxic chemotherapy and a combination of brachytherapy, surgery and different types of external radiation therapy, which is individualized for each patient. The results of the treatment are promising regarding survival, renal function, bladder function and sexual function. A study to clarify the late effects of the treatment is ongoing. This method has also been utilised on certain, even rarer forms of cancer in the lower urinary tract in children.

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