About Robin Martinez

Robin MartinezRobin Martinez joins Powerful Patient August 2015.  She is the moderator of the SmartPatients online discussion about kidney cancer.  She has spoken with, coached, and provided support to thousands of patients and caregivers, and has gathered knowledge from their experiences.  We are thrilled to welcome Robin to Powerful Patient.

Here is her story, in her own words:

My husband had been feeling tired and run down, so he’d had a physical. Nothing turned up. A few months later, driving, he shifted uncomfortably in his seat.

I glanced at him. “What’s wrong?”

“I feel like something’s poking me.” He groped around behind him, feeling the smooth padded back of the bucket seat. No lumps, bumps, or protruding springs; that wasn’t it.

A week later, he took me aside after a political meeting. “I just peed blood,” he said quietly. “It looked like cranberry juice.”

That was our introduction to kidney cancer. Often there are no symptoms until it’s too late. Often the symptoms are so general or vague that the kidneys are never considered…until it’s too late.

Symptoms may include fatigue, malaise (a general feeling of being less than healthy or under the weather), loss of appetite, possible flank pain or lower-back pain, or a sudden ongoing increase in blood pressure. Only rarely will a doctor be able to feel the mass. Blood in the urine is often absent, often treated as a bladder infection, and often goes away on its own. By the time problems become obvious, the cancer is usually far advanced.

In my husband’s case, initially we were told it was too late; he had only weeks or months to live. Fortunately, that diagnosis was wrong. The kidney was removed; and although the cancer came back a few years later, it was slow-moving. We had nearly ten more good years together, including a lot of medical adventures. Many are not so lucky.

Here’s some of what I learned.

  • Rare cancers require more effort from the patient.
  • With any rare cancer, the patient must take on a greater role in learning about the disease — if only to find a doctor who can treat it successfully. There are experts for almost every type of cancer. The trick is finding them! That burden often falls entirely on the patient and family.
  • The internet can be a great help in this. No doctor can be expected to know who’s an expert for each kind of cancer; but other patients have faced the same kind of search, and they can help you. Some have founded websites to provide information. Others form groups via mailing lists (listservs) and exchange information by email.

Robin has prepared a wealth of resource information for people affected by kidney cancer.

See http://cancerlynx.com/kidney.html