What to Do When Diagnosed with a Rare Cancer

In July of 2006 at the age of 56, I was diagnosed with cancer, specifically a rare non-Hodgkin’s lymphoma called lymphoplasmacytic lymphoma or LPL. As soon as I learned to pronounce that mouthful, my diagnosis was changed to Waldenstrom’s macroglobulinemia (WM)…..even harder to pronounce! (Actually, they are essentially the same as 97 percent of LPL is WM.) WM is an incurable but treatable indolent blood cancer. The word that stuck out to me in that description was incurable. At the time, the prognosis was five to seven years. That certainly got my attention as our only son was still in college.

What to Do When Diagnosed with a Rare CancerAbout 1,500 people are diagnosed with WM each year in the US. How did I get so “lucky?” With a disease that rare, most oncologists may only see 1 or 2 cases in their entire careers. But in my case, I did get lucky as I was put in “watch & wait” mode or “watch & worry” as I called it.  Since I did not have symptoms that needed treatment, I was told not to do anything. Talk about counterintuitive when you’re diagnosed with cancer and all you want to do is to root it out!

So, what did I do? What can you do when you receive a rare disease diagnosis? Take action! Here are the six steps I recommend:

1. Decide whom you’re going to tell about your diagnosis.

This is a very personal decision. In my case, I told everyone except my business clients and my mother. Since I was in “watch & wait” with no treatment necessary, I decided my clients didn’t need to know as that might jeopardize the income of my business partner.  As far as my mother was concerned, she had to deal with my father dying of lung cancer at 53. To her, cancer was a death sentence. She didn’t need to know and worry.

2. Get a second opinion at a center of excellence.

With a rare disease, diagnosis is sometimes tricky. Deciding on a treatment when there is no “one size fits all” approach can be even trickier. Before you set off on a treatment regimen, go to a center of excellence for your disease and get a second opinion. How do you find a center of excellence? Look at large teaching hospitals or universities where researchers are actively studying your disease. Ask your doctor for a referral and see #3 below. Your local doctor may still be able to administer your treatment based on the guidance and recommendations from an expert. After this step, I decided “watch and wait” sounded good to me.

3. Find a patient group that focuses on your disease.

If you Google “Waldenstrom’s macroglobulinemia,” just about the first site that pops up is the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) at iwmf.com. This small volunteer-led organization with a big impact in the world of WM was founded in 1994. The IWMF is dedicated to “supporting everyone affected by WM while advancing the search for a cure.” If you search for your disease, you’ll probably find a useful website.

4. Educate yourself.

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