Finding a Second Opinion Was a Pivotal Moment in My Cancer Experience

That Sunday night when my doctor called and said, “I have to see you first thing in the morning” scared the daylights out of me and was the beginning of my journey with mantle cell lymphoma (MCL), a rare variety of lymphoma.

The most important lesson I learned and want to share is that you absolutely have to fiercely be your own advocate.

My actual diagnosis came after a bone marrow biopsy. The doctor who gave my wife and me the news was a pompous jerk. He talked to the picture over our heads and said he would start treatment that week without explaining what it would be and that he treated MCL “all the time,” which was not true since MCL is rare. When I asked about a second opinion, he got all huffy and basically said I needed to start ASAP.

I insisted and got the name of an expert in MCL. We walked out of that meeting in total shock but also convinced he was NOT the doc for me. The expert contradicted the initial treatment plan and said that there was no rush to treat. This doctor even said that the treatment suggested could actually make things worse.

This was my pivotal moment. I want to share that patients should always get a second opinion. Doctors are not gods and may not be up to date on your particular cancer. Also, if you do not get good “vibes” from your doctor, leave and go find one you are very comfortable with.

I did find an excellent doctor that I “clicked” with immediately and was very forthcoming that he rarely saw MCL but would contact some experts for advice. I am a professional scientist and was able to do deep research and found a new clinical trial that I really liked. I showed it to my new doc, and he applied to the trial and got me on it.

Here I am 13 years later in good health and in full remission. Without a doctor who was willing to listen to me and trust my research, I might not be here.

Another lesson I can share is to do a lot of research. Your doctor does not have the time to keep up to date on everything — she’s not superwoman. If you can’t research on your own, find someone who can. I have helped several patients with research on their cancers. My cancer center had computers that I could use to access and print medical journals for free. This was a great resource for me.

Second, ask your primary doctor if he has patients with the same disease. I was able to talk to two other patients which was a comfort, and further, my doc later asked if I could talk to his newly diagnosed patients so I could share my research. I also joined online discussion groups and attended local conferences related to MCL and lymphoma in general. These can be valuable sources of up-to-date information and also a great comfort to share time with others in the same boat.

My final advice is to never be ashamed to ask for help, whether it is around the house (since this can be a real drain on your family) or financially, since sometimes you can’t continue working. Friends and family came through like troopers for us, but we had to ask!

This post was written and submitted Jim Maloney. The article reflects the views of Maloney and not of CURE®. This is also not supposed to be intended as medical advice.

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