How Can Prostate Cancer Collaborative Care Be Coordinated?

How Can Prostate Cancer Collaborative Care Be Coordinated? from Patient Empowerment Network on Vimeo.

How can collaborative care of prostate cancer patients be coordinated? Expert Dr. Ronald Chen discusses typical members of a prostate cancer multidisciplinary team, potential treatment goals, and treatment logistics that are commonly coordinated.

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START HERE | Collaborative Prostate Cancer Care Resource Guide 

Transcript:

Lisa Hatfield:

Dr. Chen, how do you collaborate with a patient’s medical oncologist or primary care doctor when coordinating treatment options, especially if you have a patient coming in and is being seen by a community center or coming in from a rural area?

Dr. Ronald Chen:

I think cancer care is almost always multidisciplinary. And for a patient to have the best treatment and the best outcome available, and the outcome could be survival, their outcome could be quality of life, for the patient to have the best outcome, having the expertise of multiple different types of oncologists is really, really important. 

And that includes a medical oncologist, that includes a radiation oncologist, and also often includes a surgeon, and for prostate cancer, that surgeon’s usually a urologist. And so having a team work together so then each specialist can offer their best treatment available and working together will result in the best outcome for each patient. As a radiation oncologist, I work very closely with my medical oncology colleagues in the care of patients.

Patients with advanced prostate cancer often need radiation to the prostate, radiation to areas of metastasis, radiation to the bone if there’s metastasis to prevent a fracture. So oftentimes, patients will need radiation treatment throughout the course of their treatment. And it’s really important to coordinate between medical oncology and radiation oncology in terms of the sequence of treatment. Does hormone therapy go first? Does radiation go first? Does chemotherapy go first? Does radiopharmaceutical treatment go next?

So being able to work together with a specialist team to coordinate treatment, I think, is really important. And even for patients who live in areas where there may be less resources or less availability of specialists, I think this is still really important. Radiation treatment has evolved a lot in the last 10, 20 years.

And oftentimes, radiation treatment for, let’s say, metastatic disease, it could be as few as one treatment. And so, for patients to be able to hear about that option, hear about potentially as few as one radiation treatment, how that could potentially really impact and help a patient is important, even for patients who live in rural communities, and maybe you have to drive half an hour, an hour, maybe a couple of hours, oftentimes one treatment will still be feasible, especially if it’s an important part of the patient’s care. And so coordination among the specialists is important, and having access to treatment, radiation, I think is also very important to make sure the patient does the best that they can.

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients?

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients? from Patient Empowerment Network on Vimeo.

How can advanced prostate cancer be explained to newly diagnosed patients and loved ones? Expert Dr. Yaw Nyame with the University of Washington shares key information that he explains at diagnosis and proactive advice for care partners.

Download Resource Guide

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How Can Prostate Cancer Collaborative Care Be Coordinated?

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Transcript:

Lisa Hatfield:

Dr. Nyame, how do you explain advanced prostate cancer to your newly diagnosed patients and care partners?

Dr. Yaw Nyame:

A new cancer diagnosis, obviously, is always a big stressor for patients, and one of the things that I start with is, where is your cancer? And so when we talk about localized cancer, I always try to give the information for patients to understand that is a cancer that we think are solely in the prostate alone, and I think an advanced cancer is going to be anything that’s outside of the prostate, whether that’s in lymph nodes, close to the prostate in the bone or other organs further away from the prostate.

And I think the important thing that I try to really clarify when we’re talking about an advanced cancer diagnosis is that those are the cancers that are hard to cure, but we do have a lot of fantastic options for extending life and for preserving quality of life, and those really become the focus when we talk about most advanced cancers.  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.

START HERE | Collaborative Prostate Cancer Care Resource Guide

Download Resource Guide

_START HERE Collaborative Prostate Cancer Care Resource Guide

Download Resource Guide

See More from START HERE Prostate Cancer

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.

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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.

Common Symptoms of Advanced Prostate Cancer

Common Symptoms of Advanced Prostate Cancer from Patient Empowerment Network on Vimeo.

What are common symptoms of advanced prostate cancer? Expert Dr. Xin Gao discusses the various symptoms that patients may experience and treatments that may be used to manage these common issues.  

Dr. Xin Gao is a Medical Oncologist at Massachusetts General Hospital. Learn more about this expert Dr. Gao.

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Transcript:

Katherine:

What are common symptoms of advanced disease, and how are the symptoms managed? 

Dr. Gao:

So, with advanced disease, the symptoms can present in a variety of different ways. 

They’re often related to where the cancer has spread to. If there’s a tumor in the prostate gland itself or next to it, some patients might experience urinary symptoms, urinary frequency, feeling of incomplete emptying or a weak urinary flow. Or even pain or discomfort of leading with urination. That’s sort of the primary prostate tumor itself. Bone metastases can cause bone pain and commonly this involves bones in the spine or back or in the pelvis.  

There’s also a heightened risk of fractures with bone metastases and obviously that can sometimes cause pain. However, I think I should mention, many bone metastases actually don’t cause pain. It’s not uncommon that we see a bone scan or a CAT scan that the cancer is in multiple bones, but the patient actually, you know, I think fortunately, doesn’t feel any pain from that. 

Lymph node spread, I would say, rarely causes symptoms early on, but if there’s significant enlargement of these lymph nodes or in risking anatomic areas, sometimes the lymph nodes can cause discomfort or pain. Sometimes they can compress upon major veins or blood vessels or on the ureters that drain the kidneys and cause either blood clots or lower extremity swelling if it’s the major veins or cause kidney dysfunction because the ureters aren’t draining the kidneys appropriately. And then, I think in general, as with any advanced cancer, advanced prostate cancer can commonly cause fatigue and cause patients to just kind of generally feel unwell in sort of a hard to pinpoint type of way.  

I think it’s sort of the general toll that the cancer – the burden of the cancer is causing on the body and maybe taking, you know, essential nutrients or other things away from normal body organs or body cells. 

Katherine:

How are some of these symptoms managed? 

Dr. Gao:

So, pain, if people have pain, it’s typically managed with analgesics and pain medications, whether it’s Tylenol or ibuprofen. Other NSAID types of medications. Opiates and narcotic pain medications are commonly used for advanced prostate cancers as well to control and manage and treat the pain. And patients with cancers involving the bones that have become resistant to standard hormone therapy, we also commonly give medications called bisphosphonates. 

Zoledronic acid is a common one. Or a related medication called denosumab to try to reduce the risk of fractures, to strengthen the bones a bit. And these medications can also help with bone pain to some extent. And sometimes we treat other symptoms of cancer with medications that might help improve energy levels and improve the fatigue, for example.  

So, methylphenidate or methylphenidate  (Ritalin) is a common medication that is used to try to help with energy levels or reduced energy in advanced cancer patients. Sometimes steroid medications can do that as well, could be helpful. Appetite, reduced appetite with advanced cancer is not uncommon, although I think for prostate cancer, we see it to a lesser extent compared to other advanced cancers. 

There are other medications, steroids being one of them, and medications like mirtazapine or Remeron can be used to help try to simulate the appetite a little bit more. In terms of other symptoms, urinary symptoms, let’s say from the primary prostate tumor, that’s often co-managed with my colleagues in urology. There are medications that can be used to try to help with the urinary flow or stream in some situations or perhaps procedural interventions that might be able to help open up the urinary outlet a little bit more. Those things can be considered as well. 

How Does Prostate Cancer Progress? Understanding the Stages of Prostate Cancer

How Does Prostate Cancer Progress? Understanding the Stages of Prostate Cancer from Patient Empowerment Network on Vimeo.

What do prostate cancer patients need to know about progression and recurrence? Expert Dr. Xin Gao discusses the difference between progression and recurrence and explains what occurs in the body in different stages of prostate cancer.

Dr. Xin Gao is a Medical Oncologist at Massachusetts General Hospital. Learn more about this expert Dr. Gao.

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Transcript:

Katherine:

Dr. Gao, this program is focusing on advanced prostate cancer. Would you walk us through how the disease progresses in each stage?  

Dr. Gao:

Sure. I think advanced prostate cancer can mean a lot of different things, but in general, it means a prostate cancer that has either spread out from the prostate gland itself to other areas of the body or has recurred despite either surgery or radiation-based therapy to the primary prostate tumor. 

In each of these situations, typically the focus would on medication types of treatments and we think about advanced prostate cancer as either hormone-sensitive or hormone-resistant, or the other term in the field for it would be castration-resistant, meaning that the prostate cancer is either sensitive to hormonal therapies or perhaps it’s no longer sensitive to the most common type of hormone therapy called androgen deprivation therapy. So, those are sort of the ways that the cancer can progress, and typically all these cancers start as hormone-sensitive prostate cancers and over time, they may evolve and become resistant and become what we call castration-resistant prostate cancer. 

Katherine:

Okay. So, they’re not numbered as in a lot of other cancers, like stage I, stage II?  

Dr. Gao:

Meaning by stage, oh. So, there are stages. All advanced prostate cancers are by definition stage IV. All advanced cancers, in general, are stage IV but advanced prostate cancer would be stage IV. Most prostate cancers actually present as localized prostate cancer, stage I, stage II, even stage III prostate cancers and the majority of localized prostate cancers are actually, fortunately, quite curable with either surgery or radiation-based therapies.  

Unfortunately, not all are curable, and some will recur despite these curative intent treatments, and others might just be inherently more aggressive biologically, and they could even present with metastatic disease or stage IV disease having spread to other sites outside of the prostate gland, even at diagnosis. 

When prostate cancer metastasizes or spreads, it commonly spreads by lymphatic vessels or by the bloodstream and most commonly, they tend to go to either lymph nodes or bones or some combination of both. More common areas of lymph node spread are in the pelvic areas, kind of near where the prostate gland is, or deep in the abdomen in an area called the retroperitoneum. And then bones more commonly could be in sort of the back or spine bones or in the pelvic bones, but it could go to other areas less common as well. 

What Questions Should Prostate Cancer Patients Ask About Testing and Test Results?

What Questions Should Prostate Cancer Patients Ask About Testing and Test Results? from Patient Empowerment Network on Vimeo.

What are key questions for prostate cancer patients to ask about testing and test results? Dr. David Wise explains the concept of shared decision-making and advice for taking to your doctor about test results to help access quality care.

Dr. David Wise is Director of Genitourinary Medical Oncology at the Laura and Isaac Perlmutter Cancer Center at NYU Langone Health. Learn more about Dr. Wise.

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Transcript:

Dr. David Wise:

It’s a good question. I think patients, first of all, should really understand that although the oncologist often has a lot of information and often a lot of experience, the patient is the one that really should have the power to make the decisions.  

And the patient should often remind the oncologist of that, that shared decision-making is a crucial empowerment concept that patients need to understand.   

Patients come into a treatment in an incredibly vulnerable position, and that’s for a few different factors. And I think that they need to understand that they need to express their preferences, and they need to actively take part in that decision. And I think expressing that is really important. I think oncologists should also help patients understand that, that they’re the ones in the driver’s seat, that they’re the ones that have the power to make the decision, and that the position should be arrived at in a shared decision framework.  

In terms of questions patients should ask, patients should always ask about alternative. I think oftentimes, you hear maybe just treatment option that oncologist thinks might be the best, but I think it’s important to constantly say, “Well, what are the alternative here? Is there anything else that we could think about?” Perhaps that treatment that you’re suggesting sounds really exciting, but it really may not work for me for my particular context.  

So, is there another option that the oncologist may not be thinking about because it wouldn’t be their usual recommendation. But maybe in my specific circumstance, there might be something that would work better for me. I think those are the kinds of questions, continuing to voice your preferences, what you want.   

Finding the right treatment is so critical. And arriving at it from a shared decision-making, it just continues to build that relationship, and it makes for a much better dynamic over the course of that treatment and others.  

How Do Biomarker Test Results Impact Prostate Cancer Treatment Options?

How Do Biomarker Test Results Impact Prostate Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

What can biomarker test results indicate about prostate cancer treatment options? Dr. David Wise discusses genetic mutations, treatment classes, and testing methods that are commonly examined to help determine optimal prostate cancer approaches.

Dr. David Wise is Director of Genitourinary Medical Oncology at the Laura and Isaac Perlmutter Cancer Center at NYU Langone Health. Learn more about Dr. Wise.

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Transcript:

Dr. David Wise:

So, that’s a great question. So, there are multiple gene test results that can directly influence a choice of treatment. I think that it’s important to highlight two main categories, both within the genomic testing setting. Both of these test results have their major impact in patients with metastatic prostate cancer, whether the cancer has been treated already and is resistant to current treatments, or even some situations where the cancer has not even been treated.  

For metastatic prostate cancer, I think it’s important to assess whether the cancer has evidence of a BRCA1 or 2 mutation, or whether the cancer has evidence of a genetic feature called microsatellite instability, or MSI high. Cancers that have evidence of BRCA1 or 2 have clear benefit. Patients have clear benefit from treatment that targets those genes. And that’s a class of oral medications called PARP inhibitors, several of which are already FDA-approved for hormone-resistant metastatic prostate cancer with evidence of BRCA1 or 2 mutation.  

There are even newer clinical trials which are testing the use of those medicines at the outset of men who are initially diagnosed with metastatic prostate cancer, even naïve to treatment and testing whether we should be adding on PARP inhibitors for men with that genetic feature.  

Microsatellite instability, as well, leads to a clear FDA indication for immunotherapy with what we call checkpoint inhibitors that target and reinvigorate the body’s immune system. We know that prostate cancers with that particular genetic feature, which unfortunately is still an uncommon type of prostate cancer – but when it happens, it’s important to know about it because those immunotherapies can have truly life-changing, truly very long lasting, in the order of years, benefit to keeping that cancer to an undetectable level. Now, I would say, those are the key genomic features that directly translate to changes in treatment.  

There are other biomarkers, one we haven’t talked about which is very impactful, which is levels of PSMA expression on a PET scan. So, we talked about that in the setting of making a diagnosis, but it also is important for dictating best treatment. So, we now know, based on the results of a large Phase III trial that patients with prostate cancers that have PSMA uptake on PET imaging, which is an imaging biomarker, not a genetic biomarker, but an imaging biomarker.  

Those patients respond quite well to lutetium PSMA, which is a radioligand therapy that targets PSMA-producing prostate cancers. And so, those are examples of, I think, very impactful biomarkers that patients need to know about, so that they can ask their physicians to get tested to see if they’re candidates for those potential treatments.  

So, the genetic tests can be done either on biopsy material or on blood. And the latter has really been a major advance because we’ve been able to identify patients who are eligible without exposing them to an additional fresh biopsy. Sometimes, we need to because sometimes the blood does not have sufficient material to be able to establish the diagnosis. But still, it is often worth trying because, of course, we would try to do anything to avoid undergoing a risky procedure, and this is an example of that. In order to assess hereditary genetic risk, that can be done from a saliva sample. So, often, a cheek swab is enough, but testing for that is often pretty standard as well. So, that’s another option.  

So, in order to assess PSMA expression, which lends itself directly to the use of lutetium PSMA, that’s the straightforward PET scan. It’s now something that is readily available at the vast majority of academic centers and in the community as well. 

How Do Biomarker Test Results Impact a Prostate Cancer Patient’s Prognosis?

How Do Biomarker Test Results Impact a Prostate Cancer Patient’s Prognosis? from Patient Empowerment Network on Vimeo.

How can a prostate cancer patient’s prognosis be impacted by biomarker test results? Dr. David Wise shares insight about biomarkers that are important in determining higher risk prostate cancer.

Dr. David Wise is Director of Genitourinary Medical Oncology at the Laura and Isaac Perlmutter Cancer Center at NYU Langone Health. Learn more about Dr. Wise.

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Transcript:

Dr. David Wise:

Great question. So, every biomarker needs to be considered independently.   

And whether it adds additional prognostic information to the other variables that we’ve already collected. And so, there are a few different biomarkers that we can discuss. I think that perhaps the most well-known, and in some sense very important one, is the one I mentioned before, which is the abnormal BRCA2 gene test results.  

So, patients who have that hereditary genetic mutation with BRCA2, we do have evidence that those cancers at diagnosis tend to have a higher Gleason score. They tend to be higher risk. Those cancers are still curable. Those cancers are still very treatable, but they tend to be less common in that low-risk category. So, we tend to be, at times, a bit more reluctant to manage patients with BRCA2 with surveillance alone, because their cancers typically need more intensive treatment.  

Prostate Cancer: What’s the Difference Between Hereditary and Biomarker Testing?

Prostate Cancer: What’s the Difference Between Hereditary and Biomarker Testing? from Patient Empowerment Network on Vimeo.

What’s the difference between hereditary testing and biomarker testing? Dr. David Wise explains how biomarker testing and hereditary testing differ – and discusses the impact and potential risks of some mutations.

Dr. David Wise is Director of Genitourinary Medical Oncology at the Laura and Isaac Perlmutter Cancer Center at NYU Langone Health. Learn more about Dr. Wise.

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Transcript:

Dr. David Wise:

That’s a great question. So, hereditary genetic testing is a test that looks specifically to establish whether a person is born with a gene that predisposed them to develop that cancer, and therefore has two clear implications.  

If the test result is abnormal, then the patient was born with that gene. Therefore, other family members, first-degree relatives, may also have that gene, and that may predispose those other family members to the same cancer or to other cancers. For example, BRCA2 can predispose to the prostate cancer that the patient that we’re discussing has, but it can also predispose to breast or ovarian cancer or pancreas cancer. And if the patient has an abnormal BRCA2 gene, then their first-degree relatives have a 50 percent chance of having that gene and being predisposed to cancer, not necessarily having a guaranteed development of that cancer, but having a higher risk of developing that cancer.  

So, it has implications for family member testing or what we call cascade testing, but it also has potential implications depending on the gene. And we’re looking for, even if it’s a hereditary gene, it can still have implications for how to best treat or monitor that patient’s cancer. And so, that’s the hereditary genetic testing. Now, biomarker testing is a broader umbrella term, and it just refers to any information or test result that we collect that gives us information about how that patient is going to respond to treatment, which means a predictive result. So, it tells us potentially which treatment might work better or worse or what we call a general prognostic information.  

So, information about that patient’s…the important things to what that person is worried about: How long they’re going to live, how well they’re going to respond to treatment, how aggressive their cancer is going to be. So, that’s biomarker testing. Now, what I think is particularly confusing – and maybe I’ll shed light on this – is: Well, what’s the difference between somatic genetic testing and hereditary genetic testing?  

So, somatic genetic testing is actually testing that is focused purely on what genes were mutated in the prostate that promoted the development of that cancer. Abnormal test results on that test are not directly related to hereditary risk. Just because a patient’s cancer has mutated gene X does not mean that their family member has a predisposition to develop to having that gene. They’re completely unrelated. So, really, patients should have both types of genetic testing.  

But there are specific criteria for which patient qualifies for which type of test, and that’s a detailed conversation that needs to happen between the physician and the patient. 

Essential Testing Following a Prostate Cancer Diagnosis

Essential Testing Following a Prostate Cancer Diagnosis from Patient Empowerment Network on Vimeo.

What essential tests do prostate cancer patients need following a diagnosis? Dr. David Wise shares an overview of imaging, scans, and targeted testing to help guide an optimal care and treatment plan for each patient.

Dr. David Wise is Director of Genitourinary Medical Oncology at the Laura and Isaac Perlmutter Cancer Center at NYU Langone Health. Learn more about Dr. Wise.

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Transcript:

Dr. David Wise:

Sure. So, that’s a great question. The testing for prostate cancer really has advanced over the last decade. So, it’s very much standard, of course, for patients to have a biopsy to confirm evidence of prostate cancer. That biopsy will assess for the Gleason score, which gives us information about how abnormal those cells look under the microscope.  

It remains the most important feature for understanding the risk of the cancer and how intensive the treatment needs to be to treat that cancer. Of course, the PSA at the time of diagnosis is also useful for that assessment of risk. And the MRI is the third key feature that we look at, the MRI of the prostate, that is, which is often done before biopsy and often guides the biopsy for the urologists to make sure that they’re sampling the most concerning nodule within the prostate. And that MRI gives us information about the extent of the cancer, whether there had been any spread of the cancer, and the overall size of the prostate cancer mass. Now, over the past few years, there’s been some changes.  

So, patients with high risk or very high risk but nonmetastatic prostate cancer are often also imaged with something called PET scan, which is specific for prostate cancer looking at the levels of a protein called PSMA. And there are several brand names that will provide that imaging test through this PET imaging scan. That also gives us an even more accurate sense of the extent of the cancer, whether it has spread or not.  

And I think what’s really important is also thinking about the genetics of the cancer. And so, for patients with high-risk early-stage prostate cancer or metastatic prostate cancer and for patients with a significant family history or with an Ashkenazi Jewish ancestry, we recommend hereditary genetic testing.  

And that needs to be distinguished from testing of the tumor itself or testing of the DNA derived from the tumor, which is called somatic testing. And it is not a hereditary test, but it’s a test that actually gives us information about the genes that are mutated and promoted at the development of that cancer. And that somatic testing is important, but it’s really critical for men who have advanced prostate cancer, metastatic hormone-resistant prostate cancer, where we already have FDA-approved treatments that are tailored to the results of those gene test results.  

So, those are really the standard tests that we think about. There are some emerging tests I think that some oncologists will recommend, and some won’t. The most prominent of those is the Decipher genomic score. So, that’s a test that also uses RNA or a type of genetic information from the cancer that can be used to assess the risk.  

And in my experience, that gives sometimes complementary information and adds further, I would say, or sheds further light on the tests that we already have. And particularly for men with otherwise intermediate risk prostate cancer, sometimes, the Decipher test can give us some more clarity, but I don’t think it’s absolutely critical at this time to order that test. I think we usually get the information that we need from the test that we have. 

Herramientas para Acceder a una Atención de Calidad para el Cáncer de Próstata

Herramientas para Acceder a una Atención de Calidad para el Cáncer de Próstata from Patient Empowerment Network on Vimeo.

¿Qué factores pueden influir en el acceso de un paciente con cáncer de próstata a una atención asequible y de calidad? Este video animado repasa los obstáculos más comunes y proporciona herramientas y recursos para ayudar a abordar las barreras a la atención.

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Cáncer de próstata avanzado: Cómo Ser Un Paciente Empoderado 

Entendiendo Tu Diagnóstico del Cáncer de Próstata

Entendiendo Tu Diagnóstico del Cáncer de Próstata

Construyendo una Relación con su Equipo de Atención Médica para el Cáncer de Próstata

Construyendo una Relación con su Equipo de Atención Médica para el Cáncer de Próstata 

Transcript: 

Anthony: 

¡Hola! Soy Anthony y vivo con cáncer de próstata avanzado. Esta es Niki, mi enfermera.   

Al igual que el cáncer de próstata no se comporta de la misma manera en todos los pacientes, cada paciente con cáncer de próstata tiene diferentes factores que podrían afectar su acceso a una atención asequible y de calidad. 

Niki: 

Exactamente, Anthony. Existen obstáculos que pueden afectar su potencial para controlar su cáncer.   

Estas barreras, que también se llaman disparidades de salud, son complejas y pueden incluir cosas como:1 

  •  No tener seguro de salud – o tener un seguro limitado. 
  • Experimentar racismo y discriminación. 
  • Barreras de lenguaje si el inglés no es el idioma con el que te sientes más cómodo.2 
  • Barreras culturales. 
  • Experimentar limitaciones financieras. 
  • Falta de tiempo de enfermedad o tiempo libre pagado en el lugar de trabajo. 
  • Vivir en un área remota o rural con acceso limitado a la atención. 
  • O, una falta de educación o alfabetización en salud. 

Anthony: 

Y superar o abordar estas barreras es el objetivo de la equidad en salud. 

Niki: 

¡Exacto! TODOS deben tener acceso a una atención de calidad. Y aunque no es posible resolver estos problemas de la noche a la mañana, existen recursos y servicios de apoyo para ayudar a las personas con cáncer de próstata.  Es importante identificar y discutir sus barreras con su equipo de atención médica, ya que son únicas para cada paciente individual.  

Anthony: 

En primer lugar, como hemos mencionado en videos anteriores, no dude en hablar si usted siente que está recibiendo una atención desigual. Usted puede considerar cambiar de médico si siente que no está recibiendo un trato justo o si no se siente cómodo con su equipo. 

Pero la carga de acceder a una mejor atención no debería recaer sobre usted. Su equipo está ahí para ayudar, ¿verdad, Niki? 

Niki: 

¡Para eso están ahí! Y el mejor lugar para comenzar es comunicarse con una enfermera coordinadora o trabajador social en su equipo. Pueden trabajar con usted e identificar cualquier desafío en su camino y ofrecer recursos de apoyo para guiarlo en la dirección correcta. 

Anthony: 

Exactamente – mi trabajador social me ayudó a encontrar una organización que proporcionara transporte hacia y desde mis citas de tratamiento. 

Niki, ¿hay otros servicios con los que una enfermera coordinadora o un trabajador social ayuden a conectarte?  

Niki: 

Absolutamente, veamos algunos ejemplos: 

  • Hay recursos que pueden ayudar con la tensión financiera de la atención del cáncer. Existen programas de asistencia al paciente para las personas que no tienen seguro de salud o que tienen un seguro insuficiente. Son administrados por agencias gubernamentales, compañías farmacéuticas y grupos de defensa; y, en algunos casos, estos programas pueden ayudar a cubrir el costo de los medicamentos o proporcionarlos a un costo con descuento. 
  • Los miembros del equipo que brindan apoyo emocional están disponibles para ayudarlo, como un trabajador social, consejero, terapeuta o psicólogo. 
  • Si el idioma es una barrera, los traductores pueden estar disponibles para unirse a las citas con usted, para que pueda participar activamente en sus discusiones y decisiones de atención.  Y usted puede pedir materiales en el idioma con el que se sienta más cómodo.
  • Y si su trabajo está afectando su capacidad para obtener atención, muchos grupos de defensa tienen recursos que pueden ayudarlo a defender sus derechos en el lugar de trabajo.  

Anthony: 

Niki, todos esos son estupendos servicios de apoyo. 

También quiero agregar que si usted tiene problemas para entender su enfermedad, los grupos de defensa tienen excelentes materiales en un lenguaje amigable para el paciente. Descargue la guía que acompaña a este video para obtener una lista de organizaciones recomendadas. 

Niki: 

Así es. Y, muchos centros médicos tienen defensores de pacientes disponibles para ayudarlo a comunicarse con su equipo, para que usted pueda obtener la atención que necesita y sentirse seguro de sus decisiones. Recuerde, ¡usted no está solo! 

Esperamos que este video le haya ayudado a sentirte más capacitado para pedir recursos. ¡Gracias por acompañarnos!  

Anthony: 

Y visite powerfulpatients.org/PC para acceder a más videos con Niki y conmigo. 

Socios para el Cuidado del Cáncer de Próstata: Obtener el Apoyo que Necesita

Socios para el Cuidado del Cáncer de Próstata: Obtener el Apoyo que Necesita from Patient Empowerment Network on Vimeo.

¿Qué deben saber los cuidadores para ayudar a cuidar de su ser querido Y de sí mismos? Este video animado repasa el papel de un cuidador, analiza los pasos para apoyar a un ser querido y ofrece consejos para mantener el autocuidado.

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Cáncer de próstata avanzado: Cómo Ser Un Paciente Empoderado 

Entendiendo Tu Diagnóstico del Cáncer de Próstata

Entendiendo Tu Diagnóstico del Cáncer de Próstata

Transcript: 

Anthony: 

¡Hola! Soy Anthony y vivo con cáncer de próstata avanzado. Esta es mi enfermera, Niki.  

Y esta es mi esposa, Jane. Ella no es solo mi esposa, también es mi compañera de cuidado. Desde ayudar con mi horario de citas hasta comunicarme con mi equipo de atención médica, ella trabaja conmigo para controlar mi cáncer de próstata. 

Jane: 

Y muchos de ustedes pueden ser compañeros de cuidado como yo. El objetivo de este video es ayudarlo a comprender su función y obtener herramientas que lo ayuden a apoyar a su ser querido en su jornada contra el cáncer. Y eso incluye priorizar su propio cuidado personal.  

Niki, nosotros hemos hablado sobre algunas de las cosas que yo hago para ayudar a Anthony, pero ¿cómo describirías el papel de un compañero de cuidado?  

Niki: 

Un compañero de cuidado es alguien que trabaja con su ser querido en su cuidado en cada paso del camino – desde el diagnóstico hasta la supervivencia.  

Es importante mencionar que cualquier persona puede desempeñar este papel – amigo, un miembro de la familia o un ser querido, en quien confíe para apoyar su salud. 

Jane: 

Y no hay una sola manera de ser un compañero de cuidado. Usted puede brindar apoyo de una manera que se sienta cómodo y natural para usted. 

Niki, ¿cuáles son algunas de las formas en que un cuidador puede ayudar?  

Niki: 

Sí – vamos a revisar algunos pasos. Los cuidadores pueden ayudar al: 

  • Aprender sobre el cáncer de próstata de su ser querido, para que pueda sentirse seguro al participar en conversaciones y decisiones. Usted puede solicitar recursos educativos a su equipo de atención médica. 
  • Y participar en las citas médicas tomando notas y solicitando resúmenes posteriores a la visita para que usted pueda revisar la información presentada. 
  • Luego, ayudando a su ser querido a acceder y usar su portal para pacientes y manteniendo horarios y organizando registros médicos. 
  • Escuchando a su ser querido y ayudar a sopesar los pros y los contras de las decisiones de atención. 
  • Y monitorear la salud emocional de su ser querido. 

Jane:  

Ese es un gran punto, Niki. A veces, un compañero de cuidado notará que su ser querido se siente deprimido o actúa de manera diferente antes de que ellos mismos noten algo. Los socios de atención pueden ayudar a comunicar estos problemas al equipo de atención médica e incluso pueden comunicarse con un profesional de salud mental o trabajador social para ayudar. 

Niki: 

Y eso me lleva al siguiente paso importante que muchos cuidadores a menudo pasan por alto: Cuidarse uno mismo. 

Anthony: 

Correcto, y como experimentamos de primera mano, esto es esencial. Jane luchó por hacer tiempo para sí misma después que a mí me diagnosticaron, y eso afectó negativamente su salud.  

Jane: 

Yo estaba totalmente agotada. Pero agregando tiempo para mí en el calendario y manteniéndome al día con mis citas de cuidado personal me hizo sentir mejor. ¿Qué más puede uno hacer? 

  • Primero, priorice su salud programando y manteniendo su PROPIA cita de atención médica. 
  • Continúe haciendo las actividades que usted disfruta – hay formas de hacer tiempo en el horario, incluso si no lo parece. 
  • Encuentre y use estrategias que funcionen para usted para manejar el estrés, como hacer ejercicio, leer un libro o cualquier cosa que usted encuentre relajante. Incluso una corta caminata con un amigo puede tener un gran impacto. 
  • Y haga una lista de tareas que usted le puede pasar a amigos y familiares que se ofrecen a ayudar. 

Niki: 

Ese es un gran consejo, Jane. También agregaré que luchar por un ser querido puede ser un desafío – es normal sentir una variedad de emociones.  Si se siente abrumado, hablar con alguien sobre cómo se siente puede marcar la diferencia.  Y hablar con franqueza y abiertamente con otros socios de atención en un entorno de grupo de apoyo también puede proporcionar consuelo y tranquilidad. 

Al igual que Anthony buscó el consejo de un consejero y trabajador social, es importante que Jane encuentre ese apoyo que ELLA necesita como compañera de cuidado.  

Jane: 

Esperamos que este video le haya ayudado a obtener herramientas y estrategias para ayudar a apoyar a un ser querido – y uno mismo.  

Anthony: 

Descargue la guía que acompaña a este video para revisar lo que usted aprendió.  

Y visite powerfulpatients.org/PC para acceder a más videos con Niki y conmigo. 

Vivir con cáncer de próstata

Vivir con cáncer de próstata from Patient Empowerment Network on Vimeo.

¿Qué cuidados de seguimiento son importantes para las personas con cáncer de próstata? Este video animado habla del apoyo y las herramientas para gestionar la vida con cáncer de próstata.

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Cáncer de próstata avanzado: Cómo Ser Un Paciente Empoderado

Cáncer de próstata avanzado: Cómo Ser Un Paciente Empoderado 

Transcript: 

Niki:  

¡Hola! Soy Niki y soy una enfermera profesional. Y aquí conmigo está Anthony, que vive con cáncer de próstata avanzado. [Anthony saluda]  

Anthony:  

¡Gracias por acompañarnos!  

En este vídeo, vamos a hablar de las herramientas para gestionar la vida con cáncer de próstata.  

Niki:  

Vivir con cáncer de próstata significa que los pacientes serán vigilados para detectar signos de que el cáncer puede estar progresando, y evaluar si es el momento de tratar el cáncer o considerar un plan de tratamiento diferente.  

Anthony:  

Pero para todos los pacientes, una parte importante de la vida con cáncer de próstata es la atención de seguimiento. Esto puede incluir:  

  • Seguimiento de la enfermedad y gestión de los síntomas y efectos secundarios,  
  • Así como el apoyo emocional.  
  • Y, en algunos casos, la creación de un plan de supervivencia con su equipo. 

Niki:  

Empecemos por el seguimiento de la enfermedad: Esto puede incluir exámenes y pruebas periódicas para vigilar el avance o la recuperación de su enfermedad. Y su situación y riesgo individuales determinarán la frecuencia de sus citas.  

Anthony:  

Y para los pacientes que, como yo, se han sometido a tratamiento, la gestión de los efectos secundarios a corto y largo plazo es una parte esencial de la vida con el cáncer de próstata.  

Una cuestión que puede ser un reto para algunos pacientes con cáncer de próstata es el impacto del tratamiento en la función sexual del paciente y en su imagen personal.  

Niki:  

Así es, Anthony. Es importante tener en cuenta que HAY opciones que pueden ayudar a controlar ciertos efectos secundarios, pero tienes que hablar de ellas con tu equipo sanitario. Aunque puede ser difícil hablar de los efectos secundarios sexuales o de los problemas de control de la vejiga con tu proveedor, es la única forma en que tu equipo puede ayudarte.  

Anthony:  

En mi caso, me resultó más fácil comunicar mis problemas sexuales por escrito, utilizando el portal del paciente. Además, no hay que olvidar que los compañeros de cuidados pueden ser un recurso para ayudar a sacar a relucir temas difíciles.  

Niki:  

Exactamente – utilice sus recursos y comuníquese de la manera en que se sienta más cómodo.  

Y, como hemos mencionado, también puede haber efectos secundarios emocionales para los hombres que viven con cáncer de próstata. Los pacientes pueden sentirse estresados por su diagnóstico o ansiosos por la posibilidad de que el cáncer vuelva o progrese. Trabajar con un profesional de la salud, como un trabajador social, consejero, terapeuta o psicólogo, puede ayudar a reducir la ansiedad y la preocupación.  

Anthony:  

Correcto – el otro enfoque que realmente me ayudó emocionalmente fue participar en un grupo de apoyo.  

Los grupos de apoyo permiten a los hombres reunirse e interactuar con otras personas que viven con cáncer de próstata y proporcionan una plataforma para compartir experiencias e información. En el entorno de un grupo de apoyo, puede ser más fácil para los hombres compartir detalles que no necesariamente quieren compartir con sus seres queridos.  

Niki:  

Ese es un gran punto, Anthony. Los estudios demuestran que participar en un grupo de apoyo puede ayudar a los pacientes con cáncer afrontan la ansiedad y la depresión1. 

Anthony:  

Ciertamente me anima saber que otros hombres se enfrentan a retos similares. Aunque mi grupo de apoyo se reúne en persona, hay opciones en línea para las personas que prefieren conectarse en un entorno virtual.  

Niki:  

Pero por mucho que pueda ser tranquilizador, el formato de grupo de apoyo no es para todo el mundo. Habla con tu trabajador social o consejero sobre otras opciones de apoyo para encontrar el enfoque que te resulte más cómodo para usted.  

Anthony:  

Ahora que hemos repasado el seguimiento de la enfermedad y los recursos de apoyo emocional, hablemos de la supervivencia. Niki, ¿qué es un plan de cuidados de supervivencia?  

Niki:  

Claro. Un plan de cuidados de supervivencia organiza sus cuidados de seguimiento. Puede incluir:  

  • Información sobre el tratamiento que recibió. 
  • Un calendario de seguimiento de exámenes y pruebas.  
  • Una lista de posibles síntomas y efectos secundarios. 
  • Y recomendaciones sobre el estilo de vida para establecer y mantener hábitos saludables. 

 Su equipo sanitario, junto con un compañero de cuidados, puede ayudarle a elaborar un plan y a cumplirlo.  

1 “Adaptación al cáncer: Ansiedad y angustia (PDQ®)– Versión para pacientes”. Instituto Nacional del Cáncer. Consultado en junio 22, 2022. https://www.cancer.gov/about- cancer/coping/feelings/anxiety-distress-pdq.  

Anthony:  

Es un gran consejo, Niki. Ahora que hemos aprendido algunos consejos para vivir con cáncer de próstata, ¿qué puedes hacer para participar en tu seguimiento?  

Niki:  

  • Asegúrese de programar y mantener visitas periódicas con su equipo – incluido su médico de cabecera– para poder controlar todos los aspectos de su salud.  
  • Informe de cualquier síntoma nuevo que experimente – por pequeño que sea.  
  • A continuación, no dude en hablar de los efectos secundarios persistentes –incluidos los efectos sexuales y de la vejiga – para que su equipo pueda encontrar soluciones.  
  • Y pida apoyo emocional y recursos.  
  • Por último, si es adecuado para usted, hable con su médico sobre un plan de cuidados de supervivencia 

Anthony:  

Gracias por acompañarnos. Asegúrese de descargar la guía que acompaña a este video para acceder a la información que discutimos.  

Y visite powerfulpatients.org/PC para acceder a más vídeos con Niki y conmigo.