Although less a sign of HIV infection than it was at the beginning of the AIDS epidemic, KS remains the most common—and treatable—form of cancer in people with HIV.
[Warning: This is not your usual “Surviving Cancer” post.]
We’ve stopped any number of dinner parties with the question, “Whatever became of KS?” Regrettably, it turns out, the only scene from which Kapsoi’s sarcoma (KS) has largely disappeared is that of Hollywood and made-for-TV movies.
Outside those fantasy worlds, there are obvious reasons it’s less visible than it once was. Primarily, it’s easier to diagnose and treat.
Still, many people who contract it understandably continue to respond on a spectrum from sensitive about to traumatized by the appearance of the lesions. To the extent there is still HIV stigma (and there is), KS lesions are its most conspicuous stigmata.
Another World AIDS Day has come and gone, and with it the remembrances. That July 3, 1981 New York Times headline on a story well back in the front section—“RARE CANCER SEEN IN 41 HOMOSEXUALS”—is by now so iconic it regularly makes comebacks in movies about the early days of the AIDS crisis.
People who were around then will remember that, in the blink of a generation, Kaposi’s sarcoma (KS) sounded a death knell for legions of gay men. (The New York Times was no more ready to give on the term “homosexuals” than an American president was willing to give on the very acronym/word AIDS.)
That may well have been the time that the public began speaking in acronyms. KS. PCP (back in a more innocent time when it stood for pneumocystis carnii pneumonia). GRID. AIDS. PWA. HIV. CDC. Eventually, ACT-UP.
We once roomed with an ACT-UP member whose “celebrity” status derived from many things, but principally because he was a then-unheard-of six years into living with AIDS (another acronym that has largely surrendered to “living with HIV”).
In stark contrast to many of his compatriots, he loved un-shirting to reveal his KS-lesion “leopard spots” (his term), which he also called his “AIDS badge”. “They’re my freak flag, and I’m letting it fly,” he would proclaim with his killer ear-to-ear smile.
At the AIDS March on Washington, another friend was marched back to bed when D.C. doctors found KS in his lungs. Now here’s the thing: he lives to tell.
Back in the day, KS and PCP were shorthand for “18 months”. Successful drug “cocktails” and a gazillion acronyms later, it’s treatable.
What is KS?
The ink had barely dried on the Times story before KS became “gay cancer” in common parlance. But to its credit, the Times was doing fact-based reporting, such as there were facts, if not PC (we hadn’t that acronym yet, either) headlining.
The salient—which is to say mysterious—facts the paper reported was that Kaposi’s sarcoma (alternately spelled “Kaposi sarcoma”) more typically appeared in men older than 50, particularly men of Mediterranean, Eastern European, or Middle Eastern origin.
The CDC contributed to the Times story the fact that, previously, it had occurred in 6/100ths of a case per 100,000 people annually, “about two cases in every three million people.” The paper noted that it was somewhat more common, if hardly prevalent, in equatorial Africa.
For anyone new to the history, the Times was commendably accurate in its description of KS:
“Doctors have been taught in the past that the cancer usually appeared first in spots on the legs and that the disease took a slow course of up to 10 years. But these recent cases have shown that it appears in one or more violet-colored spots anywhere on the body. The spots generally do not itch or cause other symptoms, often can be mistaken for bruises, sometimes appear as lumps and can turn brown after a period of time. The cancer often causes swollen lymph glands, and then kills by spreading throughout the body.” [verbatim]
Is it gone?
Regrettably not, if less visible and talked about.
The American Cancer Society calls KS an “AIDS-defining illness,” meaning that when someone with HIV is diagnosed with KS, “that person officially has AIDS (and is not just HIV-positive).”
The ACS elaborates, “In the United States, treating HIV infection with highly active antiretroviral therapy (HAART) has resulted in fewer cases of epidemic KS. Still, some patients develop symptoms of KS in the first few months of HAART treatment.
“For most patients with HIV, HAART can often keep advanced KS from developing. Still, KS can still occur in people whose HIV is well controlled with HAART. Once KS develops it is still important to continue HAART.
In areas of the world where HAART is not easy to obtain, KS in AIDS patients can advance quickly.” [verbatim]
“KS is caused by a virus called human herpes virus 8 (HHV-8), also known as Kaposi's sarcoma-associated herpes virus (KSHV). KS develops when infected cells that line lymph or blood vessels begin to divide without stopping and spread into surrounding tissues. Whereas most cancers begin in one part of the body and may later spread to other areas, KS can start in several parts of the body at the same time.
“KS usually appears as lesions (abnormal bumps, spots or patches) on the skin or on mucosal surfaces (such as inside the mouth or in the genitals). Lesions can also develop in other parts of the body, such as in the lungs, lymph nodes or gastrointestinal tract.”
Still, aidsmap says, KS “one of the most common cancers in people living with HIV….
“Kaposi’s sarcoma does still occur at relatively high rates in people living with HIV. It remains one of the two most common cancers in people living with HIV in Western countries (the other is non-Hodgkin lymphoma). Among gay men living with HIV, the rate of new cases of KS is roughly the same as the rate of the most common cancers that occur in HIV-negative people, which are prostate cancer in men and breast cancer in women.”
To the extent KS is less visible in public, it is likely linked to the fact that anti-retroviral medications have the reduced the rates of it by 80-90% since the beginning of the epidemic.
What do we need to know about KS now?
Multiple sources confirm what aidsmap again puts best:
“KS can occasionally flare up in the first few months after starting HIV treatment. This may be due to a condition called immune reconstitution inflammatory syndrome (IRIS). This occurs when someone has had a very low CD4 count and soon after starting HIV treatment has worsening symptoms of another disease, such as KS. In fact, the illness is thought to be caused by an improvement in the immune system’s ability to detect or mount a response to HHV-8 or KS.” [Emphasis ours]
For many people, anti-retroviral treatment is sufficient to treat KS. In cases in which it is not, other cancer treatments are available.
The ACS is helpful regarding post-KS treatment follow-up.
https://www.aidsmap.com/Kaposis-sarcoma-and-HIV/page/1044692/ [Invaluable resource]
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