Four years ago, after routine blood work, James Huffman, now 60, got a disturbing phone call.
“My doctor was out, and another doctor called, and said my PSA came back a bit high,” Huffman recalls. “And the doctor added: ‘I really would impress upon you to make an appointment, don’t let this go.’”
Prostate-specific antigen, or PSA, is a blood test used to alert doctors to a potential problem with the prostate. For men over age 50, it is part of routine screening for prostate cancer together with a digital rectal examination, where the prostate is checked using a gloved finger, feeling for nodules or abnormalities in the prostate.
“I wasn’t familiar with the PSA. When he wanted to do the blood work, I said fine no problem. i didn’t think any more about it,” Huffman says. “That was the first time I had heard anything about this.”
The prostate is a walnut-sized gland that only men have. It makes semen, the fluid that carries sperm. The prostate is located in front of the rectum and just below the bladder. It is the most common site for cancer in men after skin cancer — one in six develops it in their lifetime.
The prostate enlarges as men age, but sometimes a group of cells start to grow abnormally and creates a cancerous tumor that can spread to other parts of the body. Most do not spread. But, if it does, it usually goes to the bone or areas inside of the abdomen.
Huffman decided to wait before having a biopsy, where doctors take a piece of the prostate and look at it under a microscope, looking for cancer. Initially, his PSA was over 6 — normal is 4. In months, it rose to 7.8. Then, he agreed to the biopsy.
“I asked a friend who had had prostate cancer in the past. He suggested that with African-American men it was too aggressive to watch and wait,” says Huffman.
For unclear reasons, African-American men have higher rates of developing and dying from prostate cancer than men of other racial or ethnic groups in the United States. One in five African-American men is diagnosed with prostate cancer, one in 20 die from it. They die almost 2.5 times more than white men.
Huffman’s biopsy was negative.
A few months later, a year after his first abnormal PSA level, his level came back at 9. He and his doctor decided to repeat a biopsy and take a larger amount of prostate this time.
”[The biopsy] was so positive that it was prostate cancer,” Huffman says.
He decided to have his prostate removed using robotic surgery. The cancer had grown throughout his entire prostate, but luckily, it did not spread outside of it.
“It was hard to believe. I didn’t know anything about this before. I had not had a history of anything except for [high blood pressure] before this,” says Huffman.
Fred Irvin, 56, shared a similar disbelief. Diagnosed over a year ago, he too had routine blood work to screen for prostate cancer. His PSA level came back at 8.2. He had a biopsy right away, and the results were distressing.
“The psychological part of this thing was hard. I had cancer, the big C, how do you tell the family?,” Irvin says. “I have a daughter in college, 22 years old, and a son 28. How do you tell them? My daughter was just devastated. I reassured her it wasn’t the end and its treatable.”
Within months, Irvin chose to have his prostate removed.
“Because of my age and the fact that I’m African-American, the protocol was to take it out — to not even play around,” says Irvin.
One of the more treatable cancers, prostate cancer has a survival rate of 99 percent. Yet, black men tend to delay screening and diagnosis, sometimes until it is too late.
“I have a friend of mine who has a PSA of 22 — almost 3 times what mine was — but he refuses to get a biopsy. The reality is you need to know,” Irvin says. “He’s playing with fire.” Irvin has already seen the consequences — he recently met a man whose prostate cancer had spread throughout his body before he sought medical care.
As a whole, many surveys have identified a general mistrust of the medical community among many African-Americans. Yet, this aversion to seeking care is even greater among black men. Some agree that it is rooted in the experimentation on African-Americans during the Tuskegee experiment, where, for four decades, black men believed they were being treated for syphilis, but the researchers were actually observing what would happen if syphilis was allowed to progress.
Other surveys have found that African-Americans feel discriminated against by their physicians. One showed that patients have a high level of trust in their physicians when first seeking care about an issue such as cancer, until after the visit, when it drops significantly.
Aside from myths such as, biopsies actually cause cancer, the biggest concern surrounding prostate screening and cancer is its effect on erectile dysfunction and perceived manhood. Huffman frequently sees black men who refuse rectal exams because of what he thinks is homophobia.
In addition, a side effect of surgery or radiation treatment for prostate cancer difficulty with erections — this can exist for years after the surgery. In some cases, that ability may not come back.
“There are some men who wish they didn’t even have the surgery, as amazing as that sounds,” Huffman says. “After the surgery, they are happy like ‘Oh my God, I’m good’ and they are very happy. But as time goes on, six months or a year with these difficulties, the elation somewhat lowers.”
Through his outreach work, Huffman has met men who would rather die of cancer than lose their sense of manhood.
Irvin says it is still worth it. “I’m not worried about being able to perform again. Sometimes that’s compromised. Sometimes it may never come back. My doctor did tell me that, that it will take one or two years. But, that’s the last thing on my mind right now.”
Though not always successful, there are treatments for erectile dysfunction following prostate surgery or radiation — oral medications such as Viagra, or injections.
HOW WE OVERCOME IT
Researchers do not know how to prevent prostate cancer, but early detection can increase survival. Often, there are no obvious symptoms until the disease has progressed. Thus, a digital rectal exam and blood levels are the first steps for screening. This is especially important if there is family history of prostate cancer.
As Huffman says, “You should know your PSA numbers like you know your social security number.”
There is some controversy about if and when men should be screened, so it is a discussion unique to each man and his doctor.
WHAT OTHERS ARE DOING TO KEEP US HEALTHY
The American Cancer Society runs Brother to Brother support groups where black men affected by prostate cancer can come together and talk. Huffman says that even being in a room of other men with prostate cancer who have issues surrounding erectile difficulties, men are still not as supportive as they need to be.
“You’re taught to grin, bear it and go on,” he says. “If you can’t open up and feel like that, then who do u speak to about it? You can’t really speak to your spouse. The doctors, they don’t talk about it, or feel comfortable talking about it.”
The Prostate Education Project teamed up in 2009 with the Black Barbershop Outreach Program to utilize 100 barbershops around Los Angeles to not only teach black men about prostate cancer, but also link them to low-cost or free doctors in the area.
The Prostate Health Education Network, led by Thomas Farrington, will hold rallies at select black churches nationwide on this Father’s Day to raise awareness about the importance of prostate cancer and screening.