Urology Awareness Month

September is Urology Awareness Month – a month to raise awareness of urological diseases including kidney cancer. This campaign takes place every year, to spread knowledge and bring together the urology community, such as researchers, doctors, allied healthcare professionals and patients.

How is kidney cancer relevant to BHD?

BHD is a genetic disease and, in some people, it can lead to tumours over time. Fewer than 1 in 3 people with BHD get kidney cancer. People with BHD may develop tumours in both kidneys or more than one tumour in the same kidney at the same time. However, in most cases, tumours in the kidney(s) develop slowly and with regular monitoring and treatment are usually not life-threatening.

What measures can I take as a BHD patient?

It is recommended by experts to have regular kidney scans from adulthood. Early diagnosis is vital as it can lead to early management and treatment.

What are the symptoms of kidney cancer?

In the majority of kidney cancer cases, the signs of kidney cancer show during the mid-to-late stages of the condition. That is why it is so important to have kidney scans in BHD as you may not have any symptoms in the early stages.  There are a range of symptoms, but the most common symptoms include:

  • Blood in your urine
  • Constant pain below the ribs
  • A lump or swelling in your side

Other less common symptoms of kidney cancer are:

  • Unexplained weight loss and/or loss of appetite
  • Extreme tiredness
  • High blood pressure
  • Night sweats
  • High temperature

If you do have any of these symptoms, it is important that you see a doctor.

What are the treatments for kidney cancer?

The treatments for kidney cancer vary case by case. It’s important to tell your kidney doctor that you have BHD and that over time you may develop more kidney tumours. This may affect the treatment you are offered.  In BHD tumours are usually only removed once they are 3cm long. Treatments include:

  • Partial nephrectomy: This is a procedure which removes the cancer but leaves as much of the kidney as possible. This type of surgery is usually recommended in BHD cases.
  • Radical nephrectomy: This is surgery where your entire kidney is removed. For some patients, this can include the removal of surrounding structures such as fat and lymph nodes.
  • Radiofrequency ablation: Radio waves are used to kill cancer cells.
  • Medicines: There are targeted cancer medicines that aim to stop the cancer from growing. These are normally used in cancer that has spread around the body.  
  • Radiotherapy: Radiotherapy uses radiation to kill cancer cells. This is not often used in kidney cancer cases.

There are other treatments available for kidney cancer. Please click here to read more about treatments.

How can I take part in Urology Awareness Month?

You can help spread awareness of kidney cancer and other urological conditions on social media, or by simply talking to friends, family, and colleagues.

The Urology Foundation have a range of resources that you can use. This includes, posters, leaflets and more. Their website also has a guide on how to raise awareness on social media and fundraising ideas.

Please join us this month to raise awareness about kidney cancer and help people with BHD learn more about the condition.