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Patients Against Lymphoma


Support > Patient-to-Patient > Patient Experiences & Guidance

Lucky to Have Follicular Lymphoma?

Last update: 01/03/2015

We were told that Joanne was "lucky", because her lymphoma was an indolent type, follicular non-Hodgkin's Lymphoma.  This in 1996.

Being a caregiver, I have only indirect experience about these matters. But I recall how unusual the sounds of normal life sounded to me after Joanne's diagnosis. I remember thinking: How can people be excited by a ballgame, or even put out the garbage?

Okay, everything being relative, we can say it's usually much better to have follicular lymphoma than a brain cancer, or metastatic lung cancer ... when you're told to get your affairs in order because you have months to live.

So what can happen? 

It varies. A good many of us can live long and well with indolent lymphomas. Some small fraction may never need treatment. The majority, it seems, may need first treatment within three years of diagnosis. Many of us - a decreasing majority -  will need treatment repeatedly over many years. Also, we should recognize and respect that a minority will have a very difficult time from the very beginning (such as LovesToRead, and Jim) ... despite the selected approaches to treatment or lifestyle strategies. There are many varieties of follicular. Joanne has one kind; Jim had another.

So what's to worry about? 

The variety of follicular lymphoma we might have, which we can't control. The risk of progression or relapse, which we can't control The risks and toxicities in treatments, which are often effective but still mainly trial and error ... The worry about test results, which can be like waiting for the verdict from an indifferent jury.

These quality of life affects are sometimes called the psychosocial impact of being  diagnosed with indolent lymphoma. Does giving it a name help? The diagnosis is certainly nothing to be dismissed. "Do not worry" doesn't fit.

I suppose a lot depends on our natures and temperaments. My way was to direct my worry into learning about the disease and its treatments - finding promising new therapies and hopefully the process itself would add meaning to my life.

My concern is for unproductive worry ... the type that can erode the present moment; removing our capacity to see and take pleasure in what we have right now. To shake free of it I try to remind myself that, eventually, everyone will face their mortality, and that many people never even get past infancy. So we have now, and I've found that now can be a pretty amazing thing when I bring myself to look at it.

~ Karl Schwartz
Patients Against Lymphoma

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