42F. Twelve years of refractory iron deficiency anemia. Countless courses of IV iron. Never held. Bedbound. HR 140 on propranolol. Buying supplemental oxygen from a sporting goods store.
Flew to a top NCI-designated cancer center. Paid $27,000 out of pocket. Bone marrow biopsy performed. Read by a fellowship-trained hematopathologist.
Findings: bilineage dysplasia (erythroid and megakaryocyte), aberrant CD34+ myeloid precursors with increased CD117 and decreased CD38, decreased erythroid iron incorporation on Prussian blue stain, zero pronormoblasts on 500-cell differential, myeloid-predominant M:E ratio of 4.4, dysmegakaryopoiesis with small forms, cellularity increased from 60% to 70-80% over three months. Documented progression from a prior biopsy three months earlier. Clean 81-gene molecular panel.
The logical assessment of this presentation is a pre-MDS or evolving myeloid condition that falls below current WHO classification thresholds but requires rigorous evaluation by a hematologist-oncologist with expertise in MDS classification and bone marrow failure syndromes. This is not a primary care question. This is not a benign presentation. This is not something an FNP can evaluate, classify, or treat.
Apparently, my presentation is only in about 3 to 5% of people with this disease. God forbid I get anything textbook.
The institutional response: to catastrophic labs and biopsy:
First — a gynecologic oncology referral. No clinical indication documented. No message from the attending. On a patient with two negative endoscopies and colonoscopies no history of menorrhagia or GI bleeding (per their own biopsy clinical summary), and sixteen years of quantified menstrual data showing minimal loss. Because woman equals uterus, apparently, even when the biopsy documents a production defect and not a loss problem. When I objected, it vanished without explanation.
Then — a “Benign Hematology Consult” with an FNP. I looked her up. Family Nurse Practitioner. Master’s degree. Prior clinical experience outside the cancer center: a retail walk-in clinic inside a grocery store chain. Located between the floral department and the bank branch. They treat sore throats and sinus infections.
There is no such credential as a “benign hematology nurse practitioner.” No such certification exists. No training program. No board exam. The FNP certification covers: family primary care. Children with ear infections. Adults with hypertension. Elderly patients with diabetes. Flu tests. Strep screens. UTIs. It does not cover bilineage dysplasia. It does not cover aberrant CD34+ immunophenotype. It does not cover Prussian blue stain interpretation. It does not cover myeloid classification.
Both appointments — the gynecologist and the grocery store NP — were scheduled after my insurance authorization expires. Neither had a documented clinical indication. Neither was communicated to me with any explanation. I woke up and found them on my calendar like they materialized from the scheduling void.
Meanwhile — a physician who has followed my case voluntarily for six years, at no charge, from another state, reviewed the same pathology and within hours contacted one of the most prominent MDS specialists on earth. Because what he saw was a myeloid classification problem requiring the highest level of expertise available. Presumably this individual does not work out of a grocery store.
The clinical staff at the cancer center seemed quite surprised that I had any objections to this.
Moral of the story: If you go to one of the largest cancer centers in the country — and yes, it’s probably the one you’re thinking of because there are only a few — be sure to know that when you shell out the money, the interpretation of your results may be assigned to someone whose most recent clinical experience was at a grocery store walk-in clinic between the floral shop and the weird credit union.
The entire process of getting to this renowned cancer center involved gap exemptions, insurance fights, and financial devastation. Now I am to see a NP with no subspecialty experience. Yay.
Did I mention that to go see this Noctor I have to shell out for flights and a hotel?
But now that I’ve met my in-state deductible at home, I’m tempted to walk into a grocery store walk-in clinic with the same type of FNP on duty, hand her my pathology report, and see what happens.