Few know about MDS. "When you first told me, I had never heard of it before,"said Roberts' co-host George Stephanopoulos. "I
had never heard of it either," Roberts reassured him. The lack of familiarity may be universal among news anchors: Anderson Cooper, among others, said the same on his show.
Myelodysplastic syndrome affects the bone marrow. The condition - typically
manifest by low numbers of blood cells - ranges in severity and form. It's uncommon; the NCI estimates over 10,000 cases occur each year in
North America. Some doctors refer to MDS as preleukemia, because roughly a third of cases
progress to leukemia over time - that might be years, or decades. In cases that don't turn into leukemia, the disorder may be serious: Low white blood cells confers risk for infection; low red cells results in anemia, which causes fatigue and can stress the heart, among other effects;
low platelets dispose to severe bleeds. Although MDS can be caused
by cancer treatment - such as DNA-damaging chemotherapy or radiation - many cases occur without a known precipitant.
According to the ABC coverage, the condition is a "rare reaction to the chemotherapy treatments that helped her beat
breast cancer five years ago..." Now she's preparing for a bone marrow transplant. The donor is her older sister, "a virtually-perfect
match," she informed the TV
audience. This kind of news can be scary, even terrifying, to anyone who's had apparently successful cancer treatment.
Whether or not Roberts' blood condition is a complication of her treatment, her case highlights a common problem in oncology: Many cancer patients are
unaware of the possible long-term effects of the treatments they choose.
I've witnessed this phenomenon from both sides. Doctors, for their part, contribute by not clearly communicating the risks of treatment. Some may not
mention the risk of MDS or leukemia at all, or may minimize the possibility if they do so. This can happen with the best of intentions, in an effort to be
reassuring and helpful. An oncologist, for example, might say something like:
"Well, you know, the chemo has a lot of side effects. It will make your hair fall out, and it'll probably cause nausea, but we have medicines to help with
that. It will lower your immune system, and you'll be prone to infections for a while. These medicines can affect your liver, your lungs, your heart, your
kidneys...there's a small chance you might get a cancer down the road...but this is the best treatment we have now for your cancer."
Having heard this, the patient may accept the risk, knowingly, because she's preoccupied about the tumor she has at the time of the discussion. A future
leukemia - or myelodysplastic syndrome, if the doctor happens to mention it, which isn't often how these things go - is too abstract to consider.