The following is an excerpt from The Black Woman's Guide to Black Men's Health that features Michael and Erin Stennis. Michael died four years ago today of colorectal cancer. I got a note today from Erin about a call she got from a woman who's sister and mother both got a stage IV colorectal cancer diagnosis because neither had a life-saving colonoscopy. In honor of Michael and Erin's courage, I wanted you to read about them and what you can do do save your life and that of those you love. Never be afraid of a test, or a diagnosis. Be afraid of waiting too late. Be fearless for life.
Erin and Michael's Story...
Erin Stennis never intended to be a health advocate, or a cancer expert for the African American community. She also never intended to be a young widow raising two children alone.
In November 2001, her husband of 14 years, Michael Stennis, former college football star and Los Angeles businessman, got a phone call that turned their lives upside down. Michael had had a colonoscopy a few days before. The doctor revealed that he had stage IV colon cancer. It had already spread to his liver and lungs. That’s when Erin did what every woman who loves her man does. She joined him in the fight of his life.
Even though the odds were against Michael and Erin, they were determined not only to beat the cancer and get on with their lives, but to use this challenge as an opportunity to reach out to other people of color to talk about colon cancer and how to prevent it. “Our faith was strong, and we felt that we had been chosen to help others,” Erin says.
Michael underwent complicated surgery to remove as many of the cancerous tumors in his colon as possible. It was a difficult surgery, and the doctors found more extensive damage than they had anticipated, including some tumors that were too large to remove at that time. After surgery, Michael underwent a year of chemotherapy to shrink the tumors in his liver and lungs. Erin says that those were rough times for everyone. The chemotherapy left Michael weak and worn out many days. “Michael was a man who was an athlete, he was used to making his body work. But during the treatment, he had to learn to give in to what was going on. He had to learn how to rest and let the treatment do its work,” Erin says.
Although she says there were many days that he was in pain, and some days that he couldn’t even get out of bed because of treatment or the medications used to keep him out of pain, Erin smiles when she thinks of the good days—days between chemo treatments when he felt driven to do something. It was during those days that they worked together to establish and fund a colorectal cancer education campaign in the black community in the Los Angeles area that they called home. “We wanted to make sure what happened to us out of ignorance and lack of information, didn’t happen to others.
“When we started on this journey, neither of us knew that blacks are at increased risk for colon cancer,” Erin explains. Michael was 43. We thought he would get tested at age 50,” Erin says. She didn’t know that her husband was keeping a deadly secret from her. He had been having symptoms he ignored for about a year before he had the colonscopy—pain, blood in the stool, that he assumed was related to years of hemorrhoids.
“The truth is, a doctor had recommended that Michael have a colonoscopy during the time when he first had symptoms before, but being a very macho man, he did not want anything invasive. So he didn’t get the test, and he didn’t tell me that the doctor had suggested it,” she says, feeling sure that an earlier intervention could have changed the outcome. The situation was complicated by the fact that there was a history of colon cancer in Michael’s family that no one ever talked about—until after he had surgery to remove the colon tumor.
“Michael just couldn’t imagine, as many men and women, but especially men—can’t imagine that type of procedure taking place. Of course I wondered why he was going to the doctor so often, not knowing that the doctors suspected that there might be something wrong. When I finally asked him about it, he told me they were going to treat him for hemorrhoids, and that was the end of that.” Then, Erin says, Michael’s pain became more severe over the following year. “I walked into our bedroom one morning and found him hunched over in the closet in excruciating pain.”
Erin says she’ll never forget that evening in November, after the results of the colonoscopy were in, and they got that call that led to months of surgery, hospitals and treatment. “The doctor told us that the cancer was very advanced, and we would be fighting an uphill battle, if we were going to beat this. We knew that it didn’t look good. He didn’t say terminal at that point, but he didn’t give us the optimism we would have hoped for,” she said.
“Michael sat in his chair and it was just like a cloud came over him. I think my husband stayed in that place for maybe, about a week,” Erin says. Then she knew she had to kick into high gear and get him in that same mindset. “I said, okay, let’s get information. Let’s find out everything we can about this. And that’s what we did. We armed ourselves with information, and started fighting.”
Where many couples would have decided to retreat, Michael and Erin made a conscious decision to fight this cancer for themselves and for other black men. Erin says that they both spoke at LA. Area community centers, chambers of commerce, health fair, friends and family—anywhere or any time that Michael’s health would permit him to get out and tell his story. “He spread the word as long as his health would allow. He actually went into the pulpit at churches and told our story,” she says.
The power of seeing an otherwise, visually healthy, strong and successful man, in the throes of a devastating illness was an eye opener for other black men. “People told me, ‘You know what? This could be me. So I need to find out more. I need to get screened,’” Erin remembers.
There were times that Michael would rally and get surges of energy, that gave them both hope that the aggressive treatment was working. “It was a roller coaster. Some days we would get bad news—the cancer was spreading, then we would get some little ray of hope that the cancer was shrinking. We decided to go with faith, instead of prognosis. We did everything we could in the way of treatment, and left it in God’s hands to say when this fight was over.”
Eighteen months after Michael’s initial diagnosis, it became clear that the treatments were not working and his cancer would take his life soon. Michael decided that he wanted to have one last trip with his family, so he and Erin took the kids to Disney World. “He wanted them to have one more really great trip to remember,” she says. Three months after they returned, Michael Stennis lost his fight with colon cancer, and died.
But Erin says the work has not. “The response has been tremendous. You know there is a ripple effect. And by what we’ve gone through, we have been affect change for other black men and women. People who didn’t know about this disease before, know about it now and are getting tested—earlier. Erin says that many men in their church family have gone in for screenings and found precancerous polyps before they turned into cancer. One of our deacons says that Michael’s example saved his own life. Without colon cancer hitting so close to home, he would have never gone on his own steam. She says that because of their experience, many of her friends have insisted that their husbands and fathers get screened, as well. “Something powerful has come out of our sadness,” she says.
“The last few words Michael said to me were, ‘Slow down.’ And right along with that he said, ‘Keep fighting,’” she says. And she is.
As you can see from Erin’s struggles with Michael, getting black men to go to the doctor to get screened for colorectal cancer is an extremely difficult task Yolandra Johnson, M.D. is a nationally known gastroenterologist. “Many of the black men I see come in because someone else—usually his wife, or significant other has been in and urged him to go,” she says
Colorectal cancer, which is cancer that affects both the colon and rectum, if left undiagnosed is one of the top cancer killers in the United States. Nearly 8,000 black men get a new colorectal cancer diagnosis each year. And approximately 3,400 black men die from the disease, mostly because they don’t get screened or treated until the cancer is in its advanced stages. We don’t do a lot of talk about colorectal cancer in our community, but Erin will tell you that it is one of the most important conversations you can have with someone you love. It’s the third leading cancer death among both black men and women. It is alarming and sad because Dr. Yolandra Johnson says that colorectal cancer is one of the truly preventable cancers.
While the numbers of deaths from colorectal cancers is dropping, the numbers of diagnoses and deaths in our black communities has not dropped to the same extent as that among whites.
Black men and women are equally as likely to develop colorectal cancer. And because this cancer is often found in its later stages in people of color, both have poorer survival rates. But that could be changed dramatically if we got over our fears and got screened and treated.
What Are The Warning Signs?
- A change in bowel habits
- Diarrhea, constipation, or feeling that the bowel does not empty completely
- Blood (either bright red or very dark) in the stool
- Stools that are narrower than usual
- General abdominal discomfort (frequent gas pains, bloating, fullness, and/or cramps)
- Weight loss with no known reason
- Constant tiredness
- Nausea and vomiting
*Remember, early colorectal cancers do not usually cause pain. So don’t wait until he experiences pain to get help
How Do I Help Him Reduce His Risks?
Having a personal history of colorectal polyps can put him at an increased risk for colorectal cancer. Also having a history of chronic irritable bowel syndrome, and ulcerative colitis, which is a disease that causes ulcers and sores lining of the rectum and colon.
What Role Does Family History Play?
The American Cancer Society says that somewhere between 5 and ten percent of colorectal cancer is caused by an inherited gene. Another twenty percent of all people who have colorectal cancer have two other who have had colorectal cancer also. So we know that some families are at higher risk for the disease.
The problem in black families is that this is not the kind of information that was shared. So many of us don’t really know what cancers run in our families, because the “C” word has always been taboo. That’s one of the reasons why collecting family health history information now and talking openly and honestly about what is going on with our health can be a gift today and to future generations.
Screening and Diagnosis
The American Cancer Society recommends that men and women begin getting screened for colorectal cancer starting at age 50, if there are no other symptoms, warning signs or a family health history of the disease. But the American College of Gastroenterology suggests that black men and women may develop colon polyps at a younger age than their white counterparts, and now recommends that they begin getting screened at age 45.
While Dr. Johnson and other experts in the field are not sure what causes colon cancer among blacks, she does suggest that perhaps black men and women die from the disease more often because of the lateness in which they get screened and diagnosed, like Michael.
Experts used to say that screening should start with a fecal occult test that looks for blood in the stool. You can get this test from your doctor, or you can buy one at the drug store and either mail it in or take it back to your doctor. But Dr. Johnson suggests that a colonoscopy be the first line of screening for black men and women starting at age 45. She suggests that black men ( and women) have a colonoscopy every ten years if their previous colonoscopies were negative and they have no other major risk factors.
What is a colonoscopy?
If you ever watch the Today Show, you saw colonoscopy become famous when anchor Katie Couric had one on national television. It is the gold standard at this point for diagnosing colorectal cancer. Colonoscopy enables your doctor to thoroughly examine the lining of your colon (large intestine) for abnormalities and polyps. He or she will insert a flexible tube as thick as your finger into your anus and slowly advancing it into the rectum and colon. The beauty of a colonoscopy over the other options is the tube not only has a camera that allows the doctor to see your colon, it also has a pair of nippers at its end that allows him or her to snip off any polyps to have them biopsied.
Polyps are abnormal growths in the colon lining that are usually not cancerous. They can be anywhere from the size of a tiny dot to several inches. Because your doctor can't always tell a benign polyp from a cancerous one, so he or she might send removed polyps for analysis. Because cancer begins in polyps, removing them is an important means of preventing colorectal cancer.
What preparation is required?
His doctor will tell give him instructions and dietary restrictions to follow and what cleansing routine to use for the day and night before the procedure. Usually this involves drinking a lot of a special colon cleansing solution or clear liquids and special oral laxatives. The colon must be completely clean for the procedure to be accurate and complete. So you will need to make sure to help him follow his doctor’s instructions carefully.
What happens during colonoscopy?
Colonoscopy is well-tolerated and rarely causes much pain. He might have slight You might feel pressure, bloating or cramping during the procedure. His doctor might give you a sedative to help you relax and better tolerate any discomfort.
The colonscopy is fairly quick. It usually takes 15 to 60 minutes. After the colonoscopy, the doctor will explain the results of the procedure and what he or she saw. It will take a few days to get back the results of the biopsies though.
He will need to have someone with him to drive him home. doctors who have been specially trained and are experienced in these procedures.
Does Insurance Cover Screening?
- Most private insurance now pays for a colonoscopy under the age appropriate guidelines. The current recommended age accepted by most insurances is age 50.
- Medicare will cover a fecal occult blood test for a person over 50 every year. There is no co-pay or Part B deductible for having a fecal occult blood test
- Medicare will cover a flexible sigmoidoscopy, a screening of the large intestine for a person over 50, every four years, if he has an average risk of colorectal cancer. If he is having a flexible sigmoidoscopy screening, he can expect to pay 20 percent of the charges, after meeting his Medicare Part B yearly deductible
- Medicare will cover a colonoscopy for a person over 50 every 10 years, if he has an average risk of colorectal cancer. If he is having a colonoscopy, he can expect to pay 20 percent of the Medicare accepted charges, after meeting his Medicare Part B yearly deductible.
What He Should Do If He Gets a Colon Cancer Diagnosis…
If his polyps or tumors are found to be cancerous, Dr. Johnson says his medical team will “stage” his disease, which means that they will tell him how advanced his disease is and what kinds of treatment will be used.
At Stage 0, the colon cancer is at its most treatable stage. The cancer has not grown beyond the intestinal lining or the rectum. Most often, the removal of the polyps is all the treatment that is needed.
If the cancer is Stage 1, the tumor has grown into the layers of the lining of the rectum, but has not spread beyond the rectal lining. The cancer is usually surgically removed and many patients need no further treatment.
If the cancer is Stage II, the tumor has grown through the wall of your rectum into nearby tissue. It has not yet spread to the lymph nodes. Stage II rectal cancers are usually treated by surgery along with both chemotherapy and radiation therapy.
If the cancer is Stage III, it has spread to nearby lymph nodes but not to other parts of your body. The doctors will usually perform surgery and radiation therapy will be given before or after surgery.
The best approach to colorectal cancer is to stop in its tracks through screening and through paying attention to the warning signs.