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Personal Story

Conquering Cancer

May 28, 2014

Self pity is not an option for me. When it comes to AIDS, I accept it and then I do whatever's in my power to control and defeat it.

-- Shirlene Cooper, 51
HIV/AIDS housing activist
Diagnosed with HIV in 1997


Shirlene Cooper (Illustration: A.E. Kieren)

Shirlene Cooper (Illustration: A.E. Kieren)

Older folks with HIV are at higher risk for various cancers. But there is a lot you can do to prevent that, or to cope if you're diagnosed.

Shirlene Cooper, 51, is a never-give-up longtime AIDS survivor. Diagnosed near death in 1997 with HIV, syphilis, cervical cancer, and TB, this Brooklyner spent eight months in the hospital before stabilizing. Once she got out, she kicked drugs and went on to become a major New York activist for decent housing for folks with HIV/AIDS. "Self-pity is not an option for me," she says. "When it comes to AIDS, I accept it and then I do whatever's in my power to control and defeat it."

That includes defeating cancer. Since 1997, Cooper's had cancer of the cervix, vulva, rectum, skin, and mouth. She's been treated for these cancers multiple times. "I say to my doctors, 'How many times are you going to tell me I'm cancer-free?'" she laughs. But right now, she's cancer-free once again, and that's a good thing.

Cooper's cancer history is unusually tough, but she reflects a truth: aging HIV-positive men and women, even those on effective HIV treatment, are at a significantly higher risk for various cancers than their HIV-negative peers, and while we've seen a decline in the HIV-cocktail era of "old-fashioned" AIDS cancers like Kaposi's sarcoma in people with HIV, we've also seen an increase in cancers of the lungs, liver, kidneys, anus, head and neck, and skin cancers, in addition to Hodgkin's lymphoma.

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Many of these cancers are rooted in the human papilloma virus (HPV), which is passed through sexual contact -- like pregnancy and other STIs including HIV, it only takes one time to get it. It also causes genital warts and is more common, causing more problems, in HIV-positive folks than in the general population. There's a preventive vaccine for it now, but it's often not covered by insurers for people over 26 because, by that age, most people have already been exposed to HPV. "I've particularly seen higher rates of cancer in patients of mine whose T-cells were under 200 for a sustained period of time," says Dr. Jeannine Bookhardt-Murray, chief medical officer at New York's Harlem United, which cares for hundreds of HIV-positive patients. "I think it all goes back to the toll that HIV and aging together take on the body."

As with other health issues, there's much you can do to prevent cancer or to fight it aggressively if you have it, but this is an area where your local quality of health care matters a lot, and where you might have to do some extra investigating, pushing, and even traveling to get the treatment you need. Take these steps:

Get checked regularly. Talk to your primary HIV doctor about getting screened at least once a year for various cancers. A dermatologist should check you for skin cancers. Make dental visits regularly, and ask your dentist if s/he's checking for oral cancer. If you're 40 to 50, talk to your doctor about colorectal screening, and, if you're a man, about prostate screening.

Whether you're a woman or a man (straight or gay), talk to your doctor about cervical and/or anal Pap smears, or even coloscopic or anoscopic (imagery from a probe) screening for HPV-related pre-cancerous lesions, which are dramatically more common in HIV-positive people. HPV-related cancers, such as cervical and anal, can be prevented with regular screening and treatment (via cryotherapy, laser therapy, and surgery), which is why it's so important. Unfortunately, some HIV doctors are behind the curve regarding this serious area of cancer in HIV-positive folks, which is why you might have to take the initiative, make some calls, and even travel to a different city to find a provider trained in screening and treating this. University of California-San Francisco keeps a national database of providers here. You can also call them at (415) 353-7100.

Additionally, a study is being planned in 15 cities to see if regular screening and treatment of pre-cancerous lesions can help prevent anal cancer. You and your doctor can watch for enrollment at anchorstudy.org.

You might want to talk to your doctor about getting the HPV vaccine, if your insurance will cover it. There's some evidence that it may protect against HPV-related pre-cancers and cancers in HIV-positive people.

Some cancers are more likely if you have special risk factors, such as lung cancer if you smoke or recently quit, or liver cancer if you are co-infected with hepatitis B or C, and/or have cirrhosis of the liver.

Quit smoking. Please! People with HIV who smoke not only have higher rates of lung cancer but of many cancers, including anal cancer.

If you're diagnosed with cancer, get connected. The single best thing you can do if diagnosed with a cancer is to get connected, via local groups or online forums, chats, and sites, with other folks, regardless of HIV status, who are going through it or who've been there. Start at TheBody.com and click on "Ask the Experts," forums.poz.com, or join the Yahoo group PozHealth. For anal cancer specifically, you can find resources at analcancerfoundation.org/resources/patient-support/.

For the latest clinical trials for cancers in HIV-positive people, check out the AIDS Malignancy Consortium. It's written for medical pros so you might want your doctor to look at it with you.

As for Shirlene Cooper, she's made a lot of lifestyle changes. "Now I eat more fish, brown rice, and salads, and stay away from greasy foods," she says. "I quit smoking the day I found out I had oral cancer," she says proudly.

Finally, she just takes it in stride. "When I found out I had HIV in 1997 and went through near-death, I asked God to give me a second chance," she says. "He did, and I really cherish that." "He did, and I really cherish that."


Tips From the Pros

Shirlene Cooper, 51

You have to catch it in time. Make sure you go to your doctor appointments regularly. I get screened for everything every three months. Work to find the best hospitals you can, even if you have to travel. It's worth it.

Treat the pain responsibly. I needed morphine after some cancer treatments. But I was honest with my providers that I was a recovering addict. They helped me manage my pain. I learned to get up and move around with pain. Before long I wasn't even feeling it!

Walk. I walk to my doctor and other appointments as much as possible instead of taking trains, buses, or vans. I make myself take the stairs when I could take an elevator. When I come out of doctor visits uptown, I take a long walk in Central Park. That clears my mind.

Keep living your life. I haven't let cancer stop me. The last 15 years, I've been to 46 states and 23 countries working on HIV/AIDS issues. I'm planning on going to the International AIDS Conference in Melbourne, Australia, in 2014. I love spending time with my daughter and grandkids. And I love to cook. You should taste my lasagna!



This article was provided by Positively Aware. Visit Positively Aware's website to find out more about the publication.
 
See Also
Fact Sheet on HIV/AIDS Malignancies
The Basics on Cancers & HIV

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