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.

About 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.

Depending upon the disease, there may not be a clear path for treatment. Don’t blindly rely upon your doctor, who is most likely very busy trying to keep up with the latest fast-paced research on a variety of diseases. Learn as much as you can so that you can ask good questions and be involved in your treatment decisions. At the IWMF, there are wonderful educational tools ranging from a Patient Information Packet, to pamphlets written in patient-friendly language explaining the disease, to our great website, to an annual Educational Forum for patients.

5. Find support for yourself and your caregiver(s).

Being diagnosed with a rare disease is incredibly difficult. You may feel very alone and isolated. Get help from others who have been there. The IWMF offers support groups, a volunteer phone line, an online discussion group, a Facebook site, and more where you can talk with others who are either ahead of you or behind you in their learning curve and their disease status. I’ll never forget going to my first WM support group meeting and discovering:

a. How wonderful it was to realize that I couldn’t tell who had the disease and who was the caregiver.

b. What a relief it was to talk to others with the same disease.

6. Consider a clinical trial if you need treatment.

The only way that new treatments for rare diseases can be developed is through clinical trials. I am grateful to those WM patients who have participated in clinical trials, thus contributing to a better understanding of my disease and paving the way for improved treatments. Ask your doctor about clinical trials that might be available for your disease and search the government website www.clinicaltrials.gov.

It’s been nine years now since my diagnosis. I’m lucky that I’m still in “watch & wait” and have never been treated for my disease. I’m now the president of the IWMF, and we’re still funding research trying to find that cure. The FDA recently approved the first drug we’ve ever had specifically for WM. It’s not a cure, but it will help a lot of WM patients. Overall, we’re living longer and we have more effective drugs with fewer side effects.

I never did tell my mother about my WM. She passed away this last fall at the age of 99. If we can find a cure for WM, maybe I can match her longevity!

Carl was diagnosed with WM in 2006 and has remained in “watch and wait” with smoldering WM. After getting an MBA from the Wharton School of the University of Pennsylvania, he worked for several leading marketing companies and since 1999 has had his own marketing consulting firm. Carl is in his second term on the IWMF Board of Trustees. Having served as vice president of fundraising, Carl is currently the president of the IWMF. He resides in center city Philadelphia and frequently attends the PA support group meetings.