La Historia de Jamal: Una Búsqueda de Claridad en la Cara del Cáncer de Próstata Avanzado
La Historia de Jamal: Una Búsqueda de Claridad en la Cara del Cáncer de Próstata Avanzado from Patient Empowerment Network on Vimeo.
El diagnóstico de Jamal, un paciente con cáncer de próstata avanzado, fue un shock a sus 50 años. Vea cómo comparte su experiencia desde el diagnóstico, una segunda opinión y el tratamiento, y sus consejos clave para mantenerse en la senda del empoderamiento del paciente.
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Transcript:
Mi nombre es Jamal y me diagnosticaron un cáncer de próstata avanzado a los 50 años. Soy negro y el diagnóstico de cáncer de próstata me sorprendió. Lo único inusual que había experimentado era un chorro de orina ligeramente más débil, que en aquel momento descarté como nada.
Aunque me someto a revisiones médicas anuales, descubrieron mi elevado nivel de PSA durante unas pruebas gratuitas de detección del cáncer de próstata en mi iglesia. Me remitieron a un oncólogo que me hizo una biopsia y un TAC para ayudarme en el diagnóstico y el tratamiento. Tras recibir los resultados, me informaron de mi diagnóstico de cáncer de próstata avanzado y me quedé bastante sorprendido. Mi oncólogo me recomendó terapia hormonal y cirugía para extirparme la próstata. Como a mucha gente, me preocupaba la idea de operarme. Decidí pedir una segunda opinión a otro oncólogo.
Me gustó mucho la segunda oncóloga en cuanto la conocí. Sentí que me escuchaba de verdad y que atendía mis preocupaciones sobre la cirugía. Después de ver los resultados de mis pruebas, me recomendó una terapia hormonal que podría necesitar un seguimiento con una nueva terapia hormonal para tratar mi cáncer de próstata avanzado. Me sentí aliviado y esperanzado sobre mi plan de tratamiento.
Aunque experimenté algunos efectos secundarios de fatiga y pérdida de libido, mi terapia hormonal fue eficaz. Mi esposa también fue una compañera de cuidados increíble durante este tiempo. Mi tratamiento inicial fue suficiente para eliminar el cáncer, y sigo haciéndome exploraciones cada seis meses para asegurarme de que sigo estando libre de cáncer. Me encuentro bien y disfruto de una vida plena con mi esposa, mis hijos y mis nietos. También me gusta el senderismo, el tenis y viajar. Estoy muy agradecido a mi familia y amigos por su apoyo, y me complace compartir mi historia sobre el cáncer para ayudar a otras personas que acaban de ser diagnosticadas. El cáncer da miedo, pero tu viaje puede ser más llevadero con la ayuda de una excelente atención oncológica y el apoyo de los que te quieren.
Algunas de las cosas que he aprendido en mi viaje a través del cáncer de próstata avanzado son:
- Obtenga una segunda opinión si cree que la necesita. Una segunda opinión no es algo de lo que debas sentirte culpable en tu búsqueda del mejor tratamiento avanzado para el cáncer de próstata.
- Busque atención o una consulta en un centro oncológico académico si es posible. Estas instituciones están mejor equipadas para mantenerse al día sobre las últimas opciones de tratamiento avanzado del cáncer de próstata.
- Pregunte por las opciones de ensayos clínicos. Puede haber programas que le ayuden con los gastos de viaje, alojamiento y otros gastos no cubiertos.
- Si crees que puedes ayudar a los demás, únete a un grupo de apoyo para compartir tu historia. Compartiendo mi historia he sido una bendición para poder ayudar a otros que quizá sufran en silencio.
Estas acciones para mí fueron clave para seguir en mi camino hacia el empoderamiento.
Jamal’s Story: A Quest for Clarity in the Face of Advanced Prostate Cancer
Jamal’s Story: A Quest for Clarity in the Face of Advanced Prostate Cancer from Patient Empowerment Network on Vimeo.
Advanced prostate cancer patient Jamal’s diagnosis came as a shock in his mid-50s. Watch as he shares his experience from diagnosis, a second opinion, and treatment and his key advice for staying on the path of patient empowerment.
Disclaimer: This cancer patient story has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.
See More From [ACT]IVATED Prostate Cancer
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Transcript:
My name is Jamal, and I was diagnosed in my mid-50s with advanced prostate cancer. I’m a Black man, and my prostate cancer diagnosis came as a surprise. The only unusual thing I had experienced was a slightly weaker urinary stream, which I dismissed as nothing at the time.
Even though I go for annual medical checkups, my high PSA level was discovered during free prostate cancer screenings at my church. I was referred to an oncologist who ordered a biopsy and CAT scan to aid in my diagnosis and treatment. After receiving my results, I was informed of my advanced prostate cancer diagnosis and was pretty shocked. My oncologist recommended hormone therapy and surgery to remove my prostate. Like many people, I was worried about the idea of having surgery. I decided to get a second opinion from another oncologist.
I really liked the second oncologist as soon as I met her. I really felt like she was truly listening to me and to my concerns about surgery. After looking at my test results, she recommended hormone therapy that might need follow-up with a novel hormonal therapy to treat my advanced prostate cancer. I felt both relief and hopeful about my treatment plan.
Even though I experienced some side effects of fatigue and loss of libido, my hormonal therapy was effective. My wife was also an amazing care partner during this time. My initial treatment was enough to take care of the cancer, and I continue to get scans every six months to ensure that I remain cancer-free. I’m feeling well and enjoy a full life with my wife, kids, and grandkids. I also enjoy hiking, tennis, and traveling. I’m so grateful to my family and friends for their support, and I’m happy to share my cancer story to help others who are newly diagnosed. Cancer is scary, but your journey can be eased with the help of excellent oncology care and support from those who love you.
Some of the things I’ve learned on my advanced prostate cancer journey include:
- Empower yourself by getting a second opinion if you feel like you want one. A second opinion is nothing to feel guilty about in your journey to seek your best advanced prostate cancer care.
- Seek care or a consultation at an academic cancer center if possible. These institutions are better equipped to stay abreast about the latest advanced prostate cancer treatment options.
- Ask about clinical trial options. There may be programs that will help you with travel, lodging, and other uncovered expenses.
- If you feel like you can help others, join a support group to share your story. Sharing my story has been a blessing in disguise so that I can help others who may be suffering in silence.
These actions for me were key to staying on my path to empowerment.
[ACT]IVATED Prostate Cancer Patient Plan
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Staying Proactive While Facing a Prostate Cancer Diagnosis
Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the prostate cancer community. Prostate cancer treatment options are ever-expanding with new treatments, and it’s essential for patients and families to inform themselves about testing, factors in treatment decisions, treatment types, and disparities in care. With this goal in mind, PEN initiated the [ACT]IVATED Prostate Cancer program, which aims to inform, empower, and engage patients to stay abreast of the latest in prostate cancer care.
Prostate cancer is fairly common with about 13 percent of U.S. men diagnosed in their lifetime. However, prostate cancer is highly treatable when detected early, and more is now known about screening and disparities in prostate cancer. PEN is excited to add information about prostate cancer to aid in screening measures and prevention of advanced prostate cancer.
Cancer survivor Lisa Hatfield interviewed experts Dr. Yaw Nyame from Fred Hutchinson Cancer Center, Dr. Ronald Chen from University of Kansas Cancer Center, Dr. Isaac Powell from Karmanos Cancer Institute, and care partner Sherea Cary as part of the [ACT]IVATED Prostate Cancer program.
High-Risk Prostate Cancer and Population Genetics
High-risk patient groups should stick to screening recommendations for prostate cancer to help ensure early detection. Dr. Nyame shared current guidelines. “…the American Neurological Association (ANA) and the American Cancer Society (ACS) are rooted in the best available evidence and both recommend that high-risk populations which include people of African ancestry, individuals who have strong family histories of prostate cancer, so strong usually means first degree relative, grandfather, father, brother, and it’s important to remember that there’s crossover, so it’s not just prostate cancer, but if breast cancer runs in the family or colon cancer runs in the family, or cancers in general, that can put you in a high-risk category that those individuals should consider screening starting at age 40.”
Population genetics have identified some common factors that drive aggressive prostate cancer. Dr. Isaac Powell explained some revelations of high-risk groups in West Africa, Central Africa, and Northern Europe. “So it’s the environment of West Africa, the rainforest specifically, that causes those particular diseases. Now the genetics is, in those poor inflammatory cytokines that we’ve discussed that causes prostate cancer and, in fact, other benign diseases to be more progressive, protect against these acute infections. So this is…the immune system is very complex. In some cases it protects, in some cases it drives the cancers…Northern Europe prostate cancer is more aggressive compared to Southern Europe. So it’s not just among people of color. In fact, the color makes very little difference in whether you have an aggressive cancer, particularly in Sub-Saharan West Africa as well as in European.”
Prostate Cancer Disparities and Clinical Trials Distrust
Dr. Chen discussed prostate cancer disparities in Black patients in the U.S. “And what we know is that Black patients with prostate cancer have pursued less aggressive treatment, have more delays in treatment, and are twice as likely to die from prostate cancer compared to white patients, and that’s really a large gap that we need to do more research on to close.”
The history of mistreatment of Black Americans in clinical trials has created a situation of distrust. Dr. Powell explained how the situation must be resolved. “…there’s this major distrust now that’s very difficult to eliminate in the Black community, especially if there are very few African American doctors to take care of them. So what I think that we have to fix that question of distrust, and that’s going to take a while, but I talk to them always about this mistrust issue, because I can’t see everybody, although we do need more African American doctors and nurses to take care of them and to encourage them to participate in clinical trials and to be seen as a person who is going to be taking care of them in clinical trials, that’s very important.”
Solutions Toward Better Prostate Cancer Care
Dr. Yaw Nyame discussed solutions toward improved prostate cancer care. “…in this particular space is for Black and Latinx communities to think of ways to be partners in research and to really embrace the fact that it is their right to be at the table when we make decisions about how research is conducted, what the results of our research means and how we share those results so that they have impact in our communities. And so there are a variety of ways to be partners in research, sometimes it’s literally being part of the research team, like we do on showing up to meetings every week, and being engaged in the work in all forms, just asking to participate in the trial, being a member and a participant in the trial and making sure that your experience counts in the way we think about advancing the field of prostate cancer and making it better for everybody.”
Care partner Sherea Cary shared her perspective toward better care. “…encouraging communication, encouraging the patient to share with others, other men, what their experience has been. It seems to me that when you’re in community with other people and you have something in common, then the person who is experiencing cancer or an illness, feel a connection, if they know that someone that they know has had it and survived it and seems to be doing well, that’s encouraging to them, and then we also want that person to pay it forward.”
Empowering yourself as a patient includes gaining a clear understanding of your prostate cancer and thinking about clear goals for treatment. Dr. Yaw Nyame shared his perspective. “…when it comes to advanced prostate cancer is really thinking about what your goals of care are as a patient, meaning, what do you want to see happen in your treatment, what specific things do you want to have your doctor support? And I think understanding how to build a team that will help you support those goals of care is really important, but if you don’t know really clearly, and at least to the best of your ability, what you want to see happen in your care, I think it’s hard to then advocate for those things.”
[ACT]IVATED Prostate Cancer Program Resources
The [ACT]IVATED Prostate Cancer program series takes a three-part approach to inform, empower, and engage both the overall prostate cancer community and patient groups who experience health disparities. The series includes the following resources:
- Prostate Cancer Screening and Outcomes | Impact of Racial Disparities
- Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care
- What Can Signal Hormone-Sensitive Advanced Prostate Cancer?
- Advanced Prostate Cancer Clinical Trials | Why Black and Latinx Participation Is Vital
- Prostate Cancer Clinical Trials | Is Mistrust a Barrier?
- Emerging Promising Advanced Prostate Cancer Treatments
- What Impact Does Advanced Prostate Cancer Have on Lifestyle?
- Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities
- How Can Prostate Cancer Stigmas and Misconceptions Be Addressed?
- Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer
- Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions
- How Can Prostate Cancer Disparity Gaps Be Overcome?
- Do Prostate Cancer Genetics Differ in African Americans?
- How Can Advanced Prostate Cancer Care Barriers Be Overcome?
- How Can Advanced Prostate Cancer Disparities Be Reduced?
- Are There Worldwide Links to Aggressive Prostate Cancer?
- [ACT]IVATED Prostate Cancer Resource Guide
- [ACT]IVATED Prostate Cancer Resource Guide en español
Though there are prostate cancer disparities, patients and care partners can be proactive in educating themselves to help ensure optimal care. We hope you can take advantage of these valuable resources to aid in your prostate cancer care for yourself or for your loved one.
