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Explaining the Different Types of Kidney Cancer  

Kidney cancer is the most serious complication of Birt-Hogg-Dubé syndrome (BHD). There are many different types of kidney cancer. In this toolkit, we explain the different types of kidney cancer and find out if they’ve been reported in BHD.

Kidney Cancer Symptoms

There are often very few symptoms of early-stage kidney cancer. Symptoms are often similar regardless of which type of kidney cancer you have. When symptoms do occur, they include blood in your urine, a lump or swelling in your side and pain in the side or back below the ribs. If you have any of these symptoms (or other kidney cancer symptoms), please see your doctor.

How Do I Know What Type of Kidney Cancer I Have?

Although you may have different scans during your diagnosis, it is not often possible to tell which type of kidney cancer you have from these. Instead, the scans tell the doctors about the size of the tumours and where in the kidney they are located. These scans can also often show if the cancer has spread to other parts of the body. A small sample of the tumour (known as a biopsy) may be taken to confirm the type of kidney cancer. A pathologist will study the sample under a microscope and look for cellular features associated with the different types.

Knowing which type of kidney cancer you have may impact the treatment you receive. Some kidney cancer types grow faster and are more likely to spread than others. However, in some cases you may only find out what type of kidney cancer you have after treatment. Your doctor will always discuss this with you to ensure you receive the best treatment available. Generally, outcomes are good and kidney cancer can be treated successfully. However, the quicker kidney cancer can be identified, the easier it is to be treated.

Kidney Cancer Types

Below we outline some of the types of kidney cancer. Please note this list is not exhaustive and there are other rare kidney cancer types not on this list.

Other rare types of kidney cancer include collecting duct RCC, medullary RCC and MiT Family Translocation RCC. To date, none of these cancers have been reported in people with BHD. Some kidney cancers cannot be classified into any of these groups. Unclassified kidney cancers have been reported in people with BHD.

Despite the number of studies and case reports on BHD and kidney cancer, there are still many unknowns. These include how many people with BHD develop kidney cancer and a comprehensive study of the types of kidney cancer found. The BHD Syndrome International Registry (BIRT) aims to answer these questions. We need as many people as possible to join the registry so we can help researchers answer these important questions. Understanding more about BHD and kidney cancer will help guide treatment, from surveillance guidelines through to the development of new treatments or a cure. Join the registry now.

The International Kidney Cancer Coalition is a network of patient organisations that support people with kidney cancer.