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Having a 'Good' Cancer

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Article

When I told people I have follicular lymphoma, the first reaction I got is "At least you got a good cancer.”

Karen Cohn, who has follicular lymphoma, is told she has "a good cancer."

Cancer comes in a wide range of types and stages. Some cancers are minor, quickly treated and considered cured, such as skin cancer that’s caught early and removed completely with clean margins. That’s a very early-stage, curable type of cancer.

Other cancers are not so good; they’re often caught at later stages, the treatments are debilitating and the long-term outcomes are poor. A lot of people develop them, they’re well-known and there are major organizations that advertise and fund-raise for research into treatments and cures. These tend to be the cancers many people have heard of, such as lung, liver, brain, colon and breast cancer, among others.

I don’t have one of those. I have follicular lymphoma, a form of blood cancer. The first reaction I got from a lot of people was “At least you got a good cancer.”

I have to tell you, there are bad cancers and worse cancers, but no good cancers. Yes, follicular lymphoma responds well to treatment. Yes, the symptoms are relatively mild: there are a variety of treatments available, and they tend to be well-tolerated by most people. Yes, any oncologist will be quite likely to tell you you’re more likely to die with follicular lymphoma than from it; the average lifespan after diagnosis is 20 years, which is better than it sounds because the average age at diagnosis is about 63.

But. There’s always a but, isn’t there? But, follicular lymphoma is a silent cancer, and unless it’s found by accident, it’s usually found in later stages, when it’s widely spread through the body and causes symptoms. It’s considered chronic and incurable if it’s found after stage 1, and it’s usually found at stages 3 or 4. There’s a 2% to 3% chance of relapse every year after treatment, and about 50% of patients relapse within five to 10 years. Most patients — especially those like myself, diagnosed earlier than the median age of 63 (I was 54) — can expect to need some kind of treatment several times.

It can transform into diffuse large B cell lymphoma (DLBCL), a more virulent form of blood cancer, which requires a more toxic form of treatment. DLBCL is curable, but people with transformed follicular lymphoma will still have follicular lymphoma after treatment. The DLBCL can be cured, but the lymphoma can’t.

Even if it doesn’t transform, and it comes back, then the next course of treatment will be harsher every time it comes back — longer, using medications with more severe, intense and long-lasting side effects. These medications, themselves, increase the risk of developing other kinds of cancer.

Sometimes — actually, a lot of the time — when follicular lymphoma returns, instead of being treated, patients will be placed on “watch and wait,” during which they know that there is cancer active in their body, but nothing is going to be done about it; it’s just kind of sitting there, possibly multiplying, but not currently causing any problems, other than the psychological problem of knowing it’s there — a pretty big problem for a lot of people. I mean, it’s cancer, and you and your oncologist know you have it, but no one is doing anything about it because as long as it’s not causing any problems, then the treatment is worse than the illness.

Mild chemotherapy is still chemotherapy, and although my side effects were pretty minor, not everyone is that fortunate. The thought of having to be treated with a more toxic medication is horrifying, especially knowing it’s only a stopgap and not a cure.

I haven’t experienced “watch and wait” (I went straight to treatment), and I hope I never do because I’d have to relapse to get there. But, I’ve talked to others who have, and a lot of them have trouble dealing with knowing it’s there, and wondering when it’s going to rear up its head, cause problems and require treatment.

Some people have been watching and waiting for decades; others for only a few months before treatment is necessary. It can be very nerve-wracking, just contemplating that it might happen to me is nerve-wracking.

But hey, it’s a good cancer, right?

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Dr. Lauren Pinter-Brown