This disease is confusing, even to people who have dealt with cancer before.
In fact, I just tried a new cancer app, made by people who have had cancer, and they have CLL classified as Leukemia. I wrote to express the importance of filing it under Lymphoma, which you can read about in the “who cares” section if it’s of concern to you.
So if it’s perplexing to people who have been through a type of cancer, imagine how confusing it is when you’re new to it.
If you don’t care about this kind of thing, and you don’t know anyone with CLL, you should probably skip this post. I’m writing it specifically for friends who ask about it, so I have a link to send people.
It’s an energy thing. Everything I can do to conserve my energy I am doing. This seems to be helping…
Anyway, right now, I’m just going to go over
- What CLL is
- What Leukemia and Lymphoma are, and,
- Why CLL is now classified as a Lymphoma, even though it’s technically still Leukemia.
— and all in as plain English as I possibly can.
CLL stands for Chronic Lymphocytic Leukemia, that’s the type of Lymphoma I have. It’s a slower moving, or indolent cancer.
You’ve probably noticed that it has the word “Leukemia” in it. We’re coming back to that.
The difference between Leukemia and Lymphoma
Leukemia is cancer of the body’s blood-forming tissues, including the bone marrow and the lymphatic system.
That sounds pretty straightforward doesn’t it? Well it does until you hear the definition of Lymphoma.
The definition over at Mayo clinic says
Lymphoma is a cancer of the lymphatic system, the body’s disease-fighting network. The lymphatic system includes the lymph nodes (lymph glands), spleen, thymus gland and bone marrow.
Wait. So if cancers of the lymphatic system are included in leukemia, and all cancers of the lymphatic system are lymphoma, aren’t all lymphomas actually a subset of leukemia?
Technically by strictest dictionary definition? Sure.
But of course it’s more complicated than that.
The easiest way to think about it for me is to remember that basically, they are both blood cancers that manifest differently.
Is CLL Lymphoma or Leukemia? Also who cares?
Is Chronic Lymphocytic Leukemia considered lymphoma or leukemia?
Yes.
See, what had happened was, once upon not long ago CLL and SLL (Small Lymphocytic Lymphoma) were considered different diseases.
Then around 1994 (see the sidebar on that page), doctors realized that they were essentially the same disease, just forming in different places. CLL starts in the bone marrow. SLL forms in the lymph nodes. Everything else about the two diseases are the same, except for a few technical differences.
(Some doctors even say they are identical, one and the same disease.)
As to who cares? Well, I do for one.
Though Lymphoma and Leukemia can have similar symptoms, there are many important differences, not the least of which are the survival rates for someone of my age and health, as well as the recommended treatment regimens.
Besides which, people who have a working knowledge of cancer have a different level of fear about you when they hear “Leukemia” versus “Lymphoma,” and rightfully so.
You never want to worry someone with your health, but sometime it’s not that simple. And it’s even worse if they think you have a disease that you don’t have because then they have different expectations of what you may be dealing with.
Then of course there’s the issue of finding support in the cancer community. In the case of the app I’m talking about, if you want to join the proper support community, as someone with Lymphoma, you have different concerns and struggles and questions than someone with a straightforward Leukemia does. And it works the opposite way too — my experiences are of much more help to new Lymphoma patients who don’t even have my particular type, than other people who have Leukemia.
So yeah, in addition to sometimes being terrifying, cancer can be confusing to the newbie at first. But give it a couple of months. You’ll be talking about WBCs and CBCs and treatment regimens with the best of them.
Google will help give you this great education, but try starting out with suggestions from your doctor and connect with the various online and offline communities both for your type and sub-type of the disease. A lot of them went through this search before you. They’ll have tricks for finding resources and tips for not falling down the wrong rabbit holes, such as those regarding outdated treatments.
So yeah, just another day in the cancer hood, learning all about a disease that scares the piss out of literally everyone.