Does It Matter How You Were Diagnosed?

I have communicated with many patients with Follicular Lymphoma over the years, and read many more patients' stories. I'm always struck by how heterogeneous this disease is -- how differently it presents itself in different people.

I know I'm fortunate to have a version of this disease that started slow and has mostly remained that way. So many others I have spoken to have had a very different course for their disease.

One of the places where we have different experiences is in how we were diagnosed. Some of us had very obvious symptoms -- swollen nodes, night sweats, weight loss, for example. Others of us had no symptoms at all, and were diagnosed almost accidentally, maybe because a routine blood test turned up an issue, or an unrelated surgery or scan found some hidden swollen nodes. My experience is kind of in between -- I had a persistent swollen node near my hip, but I didn't have any other symptoms, and I was otherwise healthier than I had been in a long time.

Some of us might have asked a question related to this -- does it matter how I was diagnosed? Is an "accidental" diagnosis with no symptoms somehow better than a diagnosis that came because of some very obvious symptoms?

Some researchers from the Mayo Clinic had that same question, and published their results in the Blood Cancer Journal. The article is called "Incidental vs. symptomatic diagnosis of follicular lymphoma: implications of earlier detection." They essentially want to know if a patient is better off being diagnosed before there are obvious symptoms. The logic is that such a diagnosis must be early, and an early diagnosis must be better. 

The results are interesting, and depend on how you define "better." To me, as someone who has been reading about FL for a long time, they aren't really very surprising.

The researchers looked at the medical records of 908 patients who were newly diagnosed with FL between 2002 and 2015. They looked at how they were diagnosed -- because of obvious lymphoma symptoms, or "incidentally." They found that 259 (or 28,5% of their sample) had an incidental diagnosis. 

They looked at some of the characteristics of the two groups. The incidental group was more likely to be diagnosed with "early" disease -- stage I or II. This makes sense to me. They also found that this group had normal LDH levels. Most of you probably know what LDH (lactate dehydrogenase) is, or have at least heard of it. It's an enzyme found in tissues, and high LDH is often present when FL is advancing. I know it's one of those blood test components that my oncologists always point out ("LDH looks good."). So those in the "Incidental" group had normal LDH levels -- again, not surprising.  

Those are the differences. It's the similarities between the groups that are so interesting.

comparing the "incidental" and the "symptomatic" groups, there was no difference in Event Free Survival (EFS), Lymphoma-Specific Survival (LSS) or Overall Survival (OS).

In other words, whether the patients in the study were diagnosed early or later, they tended to go about the same amount of time before they needed treatment. There was no difference in how long they lived because of their lymphoma. In fact, there was no difference in how long they lived, period.

As I said, as someone who has been reading about FL for a very long time, this did not surprise me. It takes a lot to improve Overall Survival in Follicular Lymphoma. Watching and waiting versus immediate treatment? Not much difference in OS. Maintenance versus no maintenance? Not much difference in OS. Traditional chemotherapy versus nob-chemo treatment? Not much difference in OS.

And that matters.

It would be wonderful to have some breakthrough in FL that vastly improved our Overall Survival. In general, our OS has improved quite a bit since I was diagnoses 17 years ago. It was still unofficially 8-10 years back then. Now, it's closer to 15-20 years. No one knows for sure for a really great reason -- FL patients keep living so long that they can't measure the upper end of their survival. That's an excellent thing.

But all of this really matters most to me because it should ease our minds just a little.

The disease is heterogeneous -- we all experience it just a little bit differently. One implication of that is that there is no real "right answer" when it comes to treatment. If all FL was the same, we'd be able to say "start with treatment X. If you need treatment again, go with Y. And then Z." But we don't have that clear path. 

And that means lots of decisions to make, and lots of doubt that the decisions were the right ones.

Research like this should ease your mind. The decisions that you and your doctor make -- about when to start treatment, which treatment to try, and what to prioritize -- in the end, those decisions probably won't affect your survival. You don't need to say "Maybe I should have tried a different treatment" or, more to the point of this study, "Maybe I ignored that symptom too long and I would have been better off if I had been diagnosed earlier."

Forgive yourself. You made the right decision, no matter what it was. 

As I said, I'd love to see some research that tells us the right thing to do, with no doubts or questions.

But research like this is second best -- it tells us that whatever it was that we did, it was OK.

Take care, everyone.