Most people, when made aware of the diagnosis, were curious as to what exactly it is — and how did I find out, and when. Here it is, my FAQs.
TL;DR Diagnosis is Hairy cell Leukemia, it has very good prognosis, and I’ve known this since April ‘21.
What exactly is the diagnosis?
Generally the diagnosis is Leukemia (read on for silver lining). I quickly learnt that there were two large classifications of this disease: chronic and acute. Chronic leukemia is a condition where a patient could have the condition for years before they find out that they have this disease.
Amongst chronic leukemia, there are various sub-types too. This version is Hairy Cell Leukemia. Within Hairy Cell Leukemia (HCL) there are some variants too, and my diagnosis was confirmed to be “Classic” HCL. Prognosis of this disease is pretty good with Overall Suvival rate (often, abbreviated as OS) is nearly the same as normal age of the population.
Condition is confirmed by unique cell mutation (BRAF V600) amongst other things, including fibrosis of bone marrow (meaning bone marrow cannot be sucked out). The flow cytometry tests of blood as well as bone (as opposed to bone marrow) also confirm the diagnosis.
If it doesn’t kill you, what does the cancer really do in this case?
Well, the disease itself rarely kills you. This can be asymptomatic or symptomatic disease. If a patient exhibits symptoms that is largely related to lesions in spleen / liver, and likely spleen enlargement. Enlargement of spleen may, in turn, cause stomach ache, loss of appetite, and / or loss of weight. In my case, there are no symptoms.
For asymptomatic patients, the treatment is needed if and only if blood counts further deteriorate under predetermined levels. My blood counts were lower than normal, but considerably higher than the levels that qualify me for treatment — until recently. Once it breached the levels, we knew we had to get the treatment. What these levels mean is: patient is at an increased risk of bleeding (internally, externally, etc.), increased risk of anemia, and increased risk of infections.
How did I find out about this?
I was also diagnosed for Vitamin D deficiancy back in ’19 or ’20. COVID lockdowns had begun 12 months ago and our schedules and our routines had gotten too comfortable; with that, my exposure to sun had dramatically reduced since everything was done from home. We suspected (well, Yachna did!) that my Vitamin D was likely starving.
I went to the doctors to get that checked. My new primary care physician, ordered additional tests along with Vit D test (usual tests for cholesterol, CBC, etc.). What she found was a bit concerning to her: most of my blood counts from RBC, HGB, WBC, Platelets were close to or below the min threshold. It was not overly concerning to me since I had remembered the counts to be on the lower end from before.
But she insisted we do more tests. And the tests discovered this rare condition that causes pancytopenia (meaning, all blood counts drop near / below the lower threshold).
Following this early test, we did several tests that re-/re-re- confirmed the diagnosis a few times.
When did I find out?
Well, I found out in mid-April but the bone-marrow and CT wasn’t done yet. I didn’t believe the diagnosis, entirely (again, I had / have no symptoms). However, those tests re-confirmed the diagnosis in late April and early May.
At this point, the diagnosis was confirmed but there was no need to publicly state it. One, it was a distraction from my immediate plans — work, family plans, summer trips.
Partly, it was also driven by my wishful thinking : there is long way to qualify for treatment. And I may be able to reverse it by lower stress, eating healthy, etc.
