Claudia’s Story – Multiple Kidney Cancers

Claudia was diagnosed with BHD after having multiple kidney cancers. In this interview she shares her BHD journey. 

Could you talk us through how you were diagnosed with kidney cancer and the treatments you were given?

For two years, the growth of a solid unidentified mass in my kidney, discovered by a surveillance ultrasound, was monitored by my urologist. When it reached a significant size where there was a risk of losing my kidney, I was referred to another specialist who performed other studies such as a CT because he suspected malignancy. Lung cysts and another tumour of the same characteristics in the other kidney were discovered by the CT. The latter imaging report suggested a diagnosis of BHD. A year later, after two partial nephrectomies (kidney operations), we confirmed BHD with a genetic study.  One of the tumours corresponded to clear cell cancer and the other, a hybrid between clear cell and chromophobe cell cancer.

What led you to your BHD diagnosis?

Kidney tumours and lung cysts.

What impact did the diagnosis have on you?

At first, a lot of concern because all the professionals who cared for me had never heard of the syndrome, including the geneticist. Over time, after looking into it, I discovered that there were regular checks and that I arrived at the diagnosis moderately in time, which left me a little calmer. I am a mother of young children, perhaps their energies do not let me think much about the negatives of this disease.

Do you have regular kidney checkups and how often?

Yes, the checkups at first were every three months; currently, every six months.

What advice would you give to others with BHD and kidney cancer?

That they have faith, each case is distinct, and that they do not stop consulting and going to specialists who know about it. If they have that possibility in their country, I think it is essential to spend time being diagnosed and treated.

Is there anything else you would like to add?

Thank you for the noble task you are doing from your place as a Foundation!