Monday, September 14, 2009

September 14, 2009 - I Stand Corrected

Friday I had a long-scheduled appointment with Dr. Lerner, following my most recent CT and PET scans. I didn’t feel at all anxious going into this appointment. One of the nurses had phoned me the day after the scan with a message from the doctor, saying there was no significant change. I’m still out of remission, but the cancer hasn’t grown perceptibly since it first reappeared. It’s the sort of ambiguous news I’m used to getting from this decidedly indolent cancer.

The news could have been better – “no cancer” – but that’s highly unlikely, from what I’ve been told about this form of NHL. It could also, of course, have been worse – “the cancer has grown.”

I’m at neither extreme. I’m living with ambiguity, learning to take comfort where I can amidst the uncertainty of watch-and-wait.

There was one peculiarity the nurse had mentioned. “Did you have a fall?” she asked.

“No, what makes you think that?”

“Well,” she replied, "the PET scan shows some hot spots near your right ribs. That’s consistent with a recent injury, or it could be just an inaccuracy in the test.”

Dr. Lerner explained, when I saw him, that the PET scan shows three spots on my ribs. If I don’t recall getting a jolt in the ribs, he said, it’s probably nothing significant – a false positive. This is because the more accurate CT scan shows nothing out of the ordinary. That’s the one we trust for a detailed diagnosis.

As for the thyroid nodule, the follow-up ultrasound revealed the nodule had grown no bigger. If that proved to be the case, my endocrinologist Dr. Sher had told me some months ago, it probably means the nodule is benign (as he suspected anyway, from observing it).

That’s the problem with all this high-tech medicine. These machines are so powerful, they sometimes reveal non-problems we never knew we had.

I did learn something new from Dr. Lerner this time around: a fine point about the grading of my disease. I’ve been telling people – and writing in this blog – that, after chemo, my grading changed from “diffuse mixed large and small cell” to “follicular lymphoma.” When I described my cancer as follicular lymphoma, Dr. Lerner corrected me. Scanning the pathology report from my most recent biopsy, he told me I don’t have that grade. What I have is “diffuse small cleaved cell” lymphoma.

They're similar. Both are B-cell. Both are indolent types. Yet, when my cells are slathered onto the microscope slide, they don’t display the follicles that give follicular lymphoma its name. (Here's a sample of diffuse small cleaved cell lymphoma I found on the Internet...)

Not being schooled in the ways of these tiny cells, I can’t imagine how that difference is important. Surely it will have some influence on my treatment plan, when the time for further treatment finally comes. The details are understood only by people who peer through microscopes.

In a Google search, I came up with a page that describes the difference:

“We have investigated the cellular origin and/or pathogenesis of follicular small cleaved cell lymphoma (FSCCL), diffuse small cleaved cell lymphoma (DSCCL) and intermediate lymphocytic lymphoma/lymphocytic lymphoma of intermediate differentiation (ILL/IDL) based on a series of immunologic and molecular genetic (bcl-1, bcl-2 and bcl-3 genes) studies. These studies have led to the conclusion that the cellular origin or pathogenesis of ILL/IDL and DSCCL is distinctly different from that of FSCCL: (1) FSCCL is a neoplastic counterpart of follicular center cells (FCC) of secondary follicles because of the presence of CD10 and bcl-2 gene rearrangement and the absence of CD5 and bcl-1 gene rearrangement; (2) DSCCL and ILL/IDL are a neoplastic counterpart of mantle zone (MZ) B lymphocytes because of the presence of CD5 and bcl-1 gene rearrangement and absence of CD10 and bcl-2 gene rearrangement; and (3) FSCCL scarcely develops into DSCCL, and the previously proposed concept that DSCCL represents a diffuse counterpart of FSCCL does not hold good.“

Well, that’s clear as mud, isn’t it?

I’m just glad my DSCCL is indolent, like the FSCCL I formerly thought I had. Keep your siesta going, cancer cells. I can wait.


Wendy S. Harpham, MD said...

Hi Pastor,

Glad to read your "no growth" news on all fronts (lymphoma, thyroid).

As for the pathology, as researchers tease out the differences between follicular and diffuse indolent lymphomas,they'll be in a better position to develop specific treatments for us.

And as for the living with ambiguity, in some cases certainty comes at a terrible price. Ambiguity can be a very nice place to be living.

With hope, Wendy

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Bryan said...

I'm happy to know there were no negative changes. But I'm still praying for your full recovery and healing. I had fun reading your experiences. You are an inspiration. Keep posting!

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Michael Davis said...

Thank you for sharing your experiences to us, I'm pretty sure some people learned a lot from you. Hope and praying for your full recovery. Keep us updated how it goes.

Carl said...

Thanks, Michael. I appreciate the supportive words.