Cancer Survivorship Issues for Minority and Underserved Populations¹

A Panel Discussion on cancer survivorship addressed several issues of importance to minority and underrepresented communities. These include the influence of poverty and social injustice on access to cancer care, strategies for building bridges between minority communities and their healthcare institutions, willingness to participate in clinical trials, and quality and duration of life after the diagnosis of cancer. A clear theme is that trust is lacking between members of minority communities and their healthcare providers, most of whom are Caucasian. Trust can be built by promoting cultural sensitivity and respect, being present in the community when needed, and providing a consistent level of quality services at all times.

We will hear from people who have been on the receiving end of cancer care. There are many challenges and obstacles to overcome, including unequal distribution of cancer services and obstacles to quality cancer care in underserved communities. Today, we wish to sharpen our understanding of the challenges faced by persons of color and the underserved who need cancer care. Our speakers will introduce themselves and give you a brief summary of their personal experience with cancer. They will describe their journey through the healthcare system, their experiences along the way, and their perceptions of life as a cancer patient and cancer survivor. We are privileged to have three articulate speakers, Ms. Marilyn Carrington, Mr. Luis Casal, and Mr. Tom Sellers, who have agreed to relate their personal battles against cancer.

I am an African-American and a 2-year survivor of prostate cancer. My perceptions and experiences with the medical community have been shaped largely by past experiences of my family members. My father grew up in the 1920s in the shadow of Monticello, Thomas Jefferson’s famous home. At age 7 or 8, he broke his leg while sledding. The cast on his broken leg was set too tightly by a medical student, gangrene developed, and he became an amputee. The story was repeated throughout my youth and influenced my perspective during encounters with the medical community. Other major aspects of my family history include my mother’s death due to lung cancer at the age of 51 after a lifetime of smoking, my father’s diagnosis of prostate cancer, and his 14-year survival after radiation therapy. In 1999, I was found by screening to have prostate cancer. I am an only child, so every single member of my immediate family has developed cancer. Our experiences with cancer led me to aggressively seek optimal treatments. I am privileged to live in Boston, which has great medical facilities. I also work at the American Cancer Society and had access to exceptional resources to help me make informed decisions. My socioeconomic background gave me the resources to attain my preferences. Although my experiences might be atypical, I still dealt with the same issues of fear and mistrust of the medical community that are experienced by many other cancer patients.

Despite the discussions during this symposium about racial categories and ethnic backgrounds, I do not know where I belong. I was born in Spain just prior to the Spanish Civil War, which was followed by World War II. Difficult times in Spain forced us to go to South America when I was 19 years old. In 1960, I met my lovely wife, and we have been married for 41 years. After moving to the United States, I started having annual physical exams after age 40. I used to have a rectal exam, and I remember the doctor telling me always that it was fine. I had heard about the prostate, but I didn’t know what it was. I never asked because the doctor told me it was fine. My first PSA³ test at age 59 led to the diagnosis of prostate cancer. I had a radical prostatectomy, my PSA has been undetectable thereafter, and I am presently cancer free. I have worked with several members of the audience and the Massachusetts Department of Public Health to educate others about prostate cancer and encourage them to be screened for the disease. We have made some progress, but a lot more needs to be done.

My experiences are probably similar to those of many women who have been diagnosed with breast cancer. I have a strong family history of cancer, but I was in denial even though my grandmother, uncle, mother, and other relatives had died of various cancers. After a routine medical examination, I was told to go see the chief breast oncologist and other superb doctors at the Beth Israel/Deaconess Medical Center. After treatments began, I had to be hospitalized. As an African-American woman who had problematic experiences in hospitals, I realized I needed to develop rapport with my health providers, including the doctors, nurses, and other caregivers. At night, I wondered whether anyone would come to see me if I needed help. On nights when I was worried about the attitudes of the staff toward minority patients, I would avoid calling for assistance. It was a struggle to know that I had cancer and needed treatments to survive. Fortunately, my doctor would visit, and we talked about my concerns. My sedatives and other medications led me to be very outspoken. My doctor said that after I got better, I should talk with a support group within the hospital called “Heart To Heart, Patient To Patient.” He said, “You come, and we will see what we can do to make some changes.” I promised myself that if I were successfully treated for cancer, I would give back in whatever way possible.

We have heard from three people who entered our health system under circumstances that are not unusual in the world of cancer; they were told that they had a life-threatening illness. These events occur all throughout Boston, throughout the U.S., and involve every socioeconomic group. We will now consider how healthcare institutions can provide better access to cancer care services for members of minority and underserved populations.

One concern is simply getting to the treatments. Those who work and have good jobs can afford transportation, and some have family members who bring us for treatments. Many other people, particularly members of minority communities, struggle to get to the clinic. The city of Boston has some transport services, but they are inadequate. Some patients cannot afford the cost of treatments; a few cannot even afford to get a cab. Also, medical crises can occur at night that necessitate a hospital visit, but taxicabs are reluctant to come into our communities. These and other problems need to be resolved.

The problem of access goes beyond access to medical institutions. We have many uninsured people in our community. Those without health insurance who are not eligible for Medicare or Medicaid face many obstacles to routine medical care, cancer screening, and treatments for cancer.

Dr. Harold Freeman has spoken passionately about the impact of poverty on people’s capacity to take care of themselves and their family. Several other speakers have said that we should go out into the community. If so, how can we aid the community by making educational and healthcare services more accessible? Do we need to first resolve the economic problems that underlie health disparities in our society? Can we make better use of the present system to serve people in need?

A lot of folks are working to change the economic system. People in minority communities are doing yeoman’s work. However, the medical community needs to involve other agencies in its partnerships. Can we work with antipoverty agencies that are already in the community to reduce socioeconomic and social injustices? We will also need to be better in communicating health messages.

It is a burden on community folks to attend health education meetings or get cancer screening. People on hourly wages live from paycheck to paycheck, so they cannot afford to take time off. We need to bring cancer education or screening services to the community. If there are children, child care is needed in order for the parents to come. You need a comprehensive set of resources to enable folks to get the message and act. As part of Mayor Menino’s cancer screening crusade in Boston, employees of the City of Boston were given 4 hours to go for cancer screening without loss of salary. This strategy has been replicated by a few private companies, but many more companies need to adopt the approach.

A speaker mentioned that we should take our knowledge into the community. One problem is that the black community tends to put doctors on a pedestal. People who see a doctor should know that they have a right to ask questions and to persist until their concerns are addressed. We need to go into our communities and empower our people to seek care and be informed of their medical problems.

We have healthcare professionals in Boston who have personally gone into the community to talk about cancer. People cannot deal with the issues unless they understand the problems. It takes a commitment from healthcare professionals, because they are busy. I understand the effort required to speak in the community, perform service projects, and establish liaisons among hospitals, community organizations, and government agencies.

I agree with that point. We need to commit ourselves to making a difference and going out into the communities where we can have a major impact. The key is a sustained commitment. Knowledge is power, and the people who go out into the communities are the ones who hold the key. You have got to build trust, and you have got to build a network. It won’t work if you are in different communities on different dates. Pick an area; make that your commitment. Trust comes from a long-term relationship. When you develop a long-term relationship, people become open to you. Problems you did not see on the surface you begin to understand.

For the Hispanic population, the language barrier is an obvious obstacle to communicating effectively with healthcare professionals. Having providers learn to speak other languages is not a viable solution. I think that we should expand resources for teaching immigrants to learn English. People who don’t speak English have problems in any emergency situation that requires communication with providers. Empowering people to learn English will also provide them better opportunities to find good jobs with health benefits.

People from other countries are not familiar with our customs. Hospitals have interpreters, but that is not enough. People are frightened when they come for care. There are culturally appropriate ways to communicate medical information, but hospital personnel and healthcare providers are often insensitive to or unaware of these issues. Patients want medical help, but providers need to ease them through the medical system in a culturally appropriate manner. In some countries, for instance, women do not see male physicians, and they will not return to our clinics if assigned to a male provider.

Compliance with effective cancer screening methods, such as colonoscopy and mammography, tends to be low. Other screening procedures, such as prostate cancer screening, are controversial. What are reasons for the resistance to screening among members of your community?

In Spain and South America, we went to the doctor only when we were sick. The older people there have not changed their behavior. After my surgery for prostate cancer, I met with my three brothers in Spain to discuss PSA examinations. My youngest brother left the room, because he didn’t want to listen, and my older brothers had little to say. The cultural norm in Spain is that you go for medical tests only when you are sick. In contrast, I recently went to a meeting on early cancer detection that was attended primarily by Portuguese-Americans. They were very open to discussing their concerns regarding cancer.

I think many men have a hard time going to the doctor, particularly for regular checkups. Getting screened is even more problematic. Most men know little about the prostate. The common perception is that the diagnosis of prostate cancer means either death or complications that they do not want to discuss. Many simply do not want to know whether they have prostate cancer and will wait until the last moment to see a doctor. We need to send a positive message that this diagnosis is not a death sentence. There is resistance to leading a healthy lifestyle, let alone looking for serious illnesses that can lead to treatments that cause substantial declines in quality of life.

My friend’s husband was recently diagnosed with prostate cancer. I encouraged him to get involved. As a black man, he wanted to keep the information confidential to avoid creating another burden for himself.

We should focus not only on cancer prevention and detection, but also on wellness. People need to know how to access health services before there is a problem. We can prevent many diseases and promote healthy lifestyle if we broaden the educational messages. You go for checkups when you are not ill to avoid future problems. We need to be consistent and persistent to win the trust of the community.

I want to ask the panelists whether your physician spoke to you about participating in a clinical trial. If so, what did you think? If you were not approached, do you wish you had been offered participation?

Minority communities are often skeptical of these trials, but the view is not limited to minority communities. Many members of my support group are skeptical, because the treatments might not be effective. Also, they do worry about being harmed by the new medicines.

In my case, a clinical trial was presented to me. I was ready to accept the treatment if it could save my life. My doctor gave me several options, and I enrolled in the STAR trial that uses tamoxifen to prevent breast cancer recurrence. I had concerns about the eligibility criteria. I think that many minority patients want to participate in clinical trials but find the eligibility criteria and enrollment process to be obstacles.

When I was examining my options, I considered a clinical trial. However, I wanted the treatment most likely to be successful and least risky because I was risk averse.

I went through a clinical trial. I had undergone radiation treatments for prostate cancer and had been told I was cured. Five years later, I developed metastases to my spine and my hip bone. My oncologist suggested that I consider clinical trials, but I had to wait 2 months. I called my doctor almost daily, and I was finally enrolled. I was very optimistic, thinking that I was going to be cured by this miracle drug and that I would also advance knowledge to help others. To the contrary, I had renal failure after three treatments. I went from being an outpatient to being hospitalized. My wife was told that I might not survive, but they eventually restored my kidney function. Fortunately, I finished my treatments, and I am doing well.

All drugs that are standard cancer treatments went through clinical trials to determine whether they work. To conduct a clinical trial properly, the doctors need to determine whether the patients are appropriate for the trial. Sometimes it is difficult to get onto a trial even though you have the disease that is being studied. This can be very frustrating for patients, but only limited numbers of people can be admitted to a trial. These and other restrictions can create a negative feeling about the clinical trial process. Ethically, we do not open a trial unless we think that the treatments in the trial are at least as good as the standard treatments.

I am an oncologist, and my discussions with cancer patients often raise the specter of prolonged illness and possibly death. The reaction of each cancer patient depends not only on personality and economic resources but also on cultural background. I wonder how your cultural backgrounds influenced the way you coped and how you were helped by families and friends when you were dealing with cancer?

I had not spent a lot of time at church, but I reacted by taking on every available spiritual approach. I meditated, I prayed, and I got involved. If it could possibly help, I was going to try it. I went into training as though to run a marathon. I did whatever was needed to help get myself mentally, physically, and spiritually prepared to go though the treatment process and recovery. I sought spirituality and reached out to my friends and my prayer circle. I pursued these activities until I got back to being my old self.

We went to church every day. It is very important after cancer treatment to have support groups. Those of us who have had cancer can provide some perspective to others newly diagnosed with cancer. It helps people to understand that cancer is not necessarily a death sentence. The medical community should encourage cancer patients to seek support groups so they can learn from other people who had cancer many years ago.

Ethnic and racial minorities diagnosed with cancer face particular challenges when seeking healthcare in this country. These challenges result from differences in socioeconomic status, from cultural differences, from distrust of the healthcare system, and from perceived discrimination. As the American population ages, the number of cancer patients will increase. It will require substantial efforts to ensure that Americans of all racial and ethnic backgrounds benefit from the progress taking place in cancer diagnosis and treatment.