Don’t Be Afraid to Seek Multiple Opinions. With Matt Runge, Follicular Lymphoma Survivor
My wife dragged me to her general physician because I had this lump on my throat, which I thought was just a swollen gland. Since I also had a sore throat, the doctor gave me antibiotics and said to call if I didn’t feel better in 10 days. After the 10 days, my sore throat was gone, but my glands were still swollen. Then a few blood tests later, the doctor didn’t seem too concerned, but he asked me to come in to talk with him. We decided to do a computerized axial tomography (CAT) scan, and that I’d pay a visit to my ear, nose, and throat (ENT) physician. The ENT suggested a needle-point biopsy, which was extremely painful. With each test, my concern grew more and more.
The results of the needle-point biopsy came back. The ENT said, “It’s either going to be mononucleosis or lymphoma.” I had never heard of lymphoma, and I already had mononucleosis. I was always under the impression you could only have mono once in your life. The doctor told me that with the majority of the cases that’s true. But, once he said that, I kind of knew that I had lymphoma. We did a full biopsy of a lymph node under my neck. On December 15, 2010, it was determined that I did, in fact, have non-Hodgkin follicular lymphoma.
We scheduled a series of other tests—an EKG and a bone marrow biopsy. The bone marrow biopsy showed that I had some cancer in the bone marrow. Not a lot but some. And it was recommended to go see an oncologist. As you can imagine, the emotions going through my mind were of panic, a little depression, a little anger of why this is happening to me, and some confusion because I really don’t know what I did to deserve to have cancer. I work out seven days a week, I played soccer my whole life, I ate well, and I take care of myself; so, you know, what did I do wrong here?
During my first visit with an oncologist, he wanted to start me on chemotherapy and rituximab (Rituxan)-cyclophosphamide, doxorubicin, vincristine, and prednisone (R-CHOP) that next day. I said, “Tap the brakes, doc. You’re the first doctor I’ve seen, but no offense, I’m going to get different opinions.” I ended up seeing a total of four oncologists. I went to one of the “Ask the Doctor” forums hosted by the Lymphoma Research Foundation (LRF). And I really liked the speaker, and so I made an appointment with him and ended up choosing him as my oncologist.
When all of this is happening at first, one of the biggest points of confusion is all of the resources that are out there. You’re on the Internet, you don’t know what to believe, and then you talk to other people and they know just a small percentage of what lymphoma is, and so you get more confused. Then you go see doctors who are supposed to be the experts. One doctor is telling you to do R-CHOP, one doctor is telling you radioimmunotherapy, another doctor is saying, “watch and wait.” And really it’s very confusing, and all the while you are just trying to make one of the most important decisions that you have to in your lifetime.
At the time I was only 36, still in good health, didn’t feel bad, still going to the gym every day of the week, so I chose the treatment that had the least amount of toxicity. I have two small children; I didn’t want them see me suffer, or see me have the effects of what chemotherapy can do. So I decided to go with just a treatment of rituximab only. I don’t regret it one bit because four months after treatment, I had my first scan and it came back clean that there’s no evidence of disease. As of July 8, 2011, I was in remission. I’m still continuing treatments once every two months and have another year’s worth. Then I’ll go on to watch and wait.
I’d recommend that patients get involved with LRF at some level. They do many things to help patients. The “Ask the Doctor” program is a wonderful program. I wouldn’t have found my doctor without it. It really gives people, who aren’t as educated or haven’t done the research yet, an easy setting to ask questions. And they can hear other people’s questions that they may have not known to ask.
I’m involved in the local Lymphomathon. This is my second year participating. I had a team that raised $5,300 last year, and I hope to raise about $7,000 this year. I am also the Communications Chair for two chapters in the state of Texas. My responsibility is to be in communication with the different media outlets spreading and increasing the awareness of LRF and how they are going to eradicate lymphoma. Also I’ve been asked to be on the Inaugural Ambassadors Program, which is where I speak on behalf of LRF-talking to people who are newly diagnosed or who have questions, or speaking in a situation in a public forum.
I always share with patients to just make sure they have a very strong support team. I encourage them to talk about it, because the more I talk about it, I feel my friends and family are less uncomfortable. I’ll volunteer the information versus them not being sure how to act around me. Again, everyone’s wired differently, but that’s how I think I’ve been able to deal with it pretty well.
Updated: March 14, 2012