Tag Archive for: hormone therapy

[ACT]IVATED: Empowering Endometrial Cancer Awareness & Action

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the endometrial cancer community. Endometrial cancer treatment options are ever-evolving with new treatments, and it’s important for patients and families to educate themselves about clinical trials, risk factors, barriers to and disparities in care. With this goal in mind, PEN continues to build on to its  [ACT]IVATED Endometrial Cancer program, which aims to inform, empower, and engage patients to stay updated about the latest in endometrial cancer care.

Endometrial cancer awareness needs more visibility for multiple reasons. The incidence rate and mortality rate for endometrial cancer is increasing rather than decreasing, and the rates are rising more rapidly in non-white patient groups and ethnicities. 

PEN is proud to add information about endometrial cancer to educate more patients and their families about this rising health concern. Cancer survivor Lisa Hatfield interviewed expert Dr. Charlotte Gamble from MedStar Health and Dr. Emily Hinchcliff from Northwestern Medicine as part of [ACT]IVATED Endometrial Cancer.    

Endometrial cancer patient Sharon also shared her personal journey with cancer and highlighted some things she has learned. “After my cancer experience, I want to educate other women about what I’ve learned about endometrial cancer. Black women have nearly twice the death rate from endometrial cancer compared to white women. Hispanic, Black, and Asian women are not represented in clinical trials at equal rates to white women. And Black women are also diagnosed more frequently with rare but aggressive endometrial cancer forms.”

Endometrial Cancer Risk Factors

 Endometrial cancer may result from one or more risk factors, so it’s vital for patients to educate themselves about risk factors for early detection and treatment. Dr. Emily Hinchcliff from Northwestern Medicine discussed known risk factors for endometrial cancer. “I… think the important ones to highlight are certainly obesity. This I think is a large driver of why there is increasing incidence of endometrial cancer. This relates to kind of the hormonal regulation. Obesity results in increasing levels of estrogen that disproportionately affect the endometrium. And then similar to that, certain hormonal syndromes where women have irregular or infrequent periods like polycystic ovarian syndrome can also put them at higher risk. More globally, I think age, family history are also risk factors. And then as I mentioned, unfortunately, women who are non-white have a higher risk of endometrial cancer mortality, especially as relates to some of the higher risk endometrial cancer subtypes.”

Some patients may have questions about the endometrial cancer risk of using hair straightening beauty products. Dr. Charlotte Gamble from MedStar Health discussed what is known and what still needs more research about this potential risk factor. “…within the past few years, there have been a few major studies that have looked at patients, looking back at patients who have then developed endometrial cancer and seeing what kind of risk factors they might have had compared to patients who didn’t develop endometrial cancers. And looking at the types of patients within these studies, there are some subtle differences that need to be addressed. 

Dr. Gamble explained about the patient group in the research study. “One of the major studies was done in a cohort group of patients who had actually close family members who had breast cancer. And so this is actually a very specific type of patient population where they were already at somewhat of an increased risk of developing a type of a cancer, because they had a relative that had breast cancer. And in this cohort of patients, they found that the frequent use of hair straightener products was associated with a higher likelihood of developing uterine cancer.” The patient group was not only comprised mainly of patients with a relative with cancer but also mostly white patients rather than Black patients who most commonly use hair straightener products. With these major study issues that need additional research studies to resolve, there may be an endometrial cancer risk with the products, but no concrete conclusions can be drawn yet.

Endometrial Cancer Disparities and Challenges

 At the National Institutes of Health (NIH), endometrial cancer is one of the lowest funded studies. Dr. Gamble discussed some of the encouraging news about endometrial cancer treatments. “…having major trials come out over the past couple of years that really look at survival opportunities with the leveraged use of immunotherapies is something that is both exciting and invigorating to the field and hopefully can potentiate further funding from the NCI to be able to study this disease type.”

Endometrial cancer is a cancer that shows some disparities in health outcomes. Dr. Hinchcliff discussed racial disparities and how research can help address disparities. “We know, as a field, as a kind of medical subspecialty, that there is a racial disparity in endometrial cancer mortality. While there is a lot of research going on to address the kind of potential biologic component there, is there something different about the cancers that are developed in different racial groups? I think there’s also really important research going on about the kind of systemic and cultural barriers and differences that women of different races experience that also can dramatically impact their cancer care.”

Clinical trials are the primary way to move research and treatment advancements forward for endometrial cancer patients. Dr. Gamble discussed primary reasons for clinical trial challenges. “A lot of times when we see that these trials that are published might not represent a racially diverse group of patients. Oftentimes it’s because of two reasons. One, patients aren’t even offered clinical trials, even if they are eligible. Or two, patients might be getting care at a health facility that doesn’t have access or the infrastructure to enroll them on these clinical trials that could be available, perhaps at a regionally nearby cancer center.”

Where patients live also has an impact on their health outcomes. Dr. Gamble shared information about patients residing in rural areas. “And it looks like patients who are living rurally don’t live as long as patients who live in the cities. And so just finding differences and seeing kind of how, again, this critical race practice and how the systems and structures in the United States have contributed or might contribute to these differences that we’re seeing, has classically and historically been easy low hanging fruit.”

Endometrial Cancer Care Solutions and Successes

 With endometrial cancer disparities gaining increased awareness, researchers and healthcare systems have undertaken some efforts to reduce disparities in health outcomes. Diagnostic testing tools and clinical trial support are two ways to help improve endometrial cancer care in underrepresented communities. Dr. Hinchcliff discussed undertakings by Northwestern University. “So one of the ones that I have been working on closely is there is an ever-increasing number of diagnostic testing tools that we have within our kind of armamentarium. And so one particular test that patients may have read about or heard about is something called circulating tumor DNA.” Dr. Hinchclliff continued about efforts to improve clinical trial access, “The other thing that one of my colleagues here is working on is trying to really create access for women who have limited access to healthcare. So we have developed a clinical trial platform to allow the women, specifically of Chicago, to better understand their options for clinical trials across the institutions in Chicago.”

[ACT]IVATED Endometrial Cancer Program Resources

The [ACT]IVATED Endometrial Cancer program series takes a three-part approach to inform, empower, and engage both the overall endometrial cancer community and endometrial cancer patient groups who experience health disparities. The series includes the following resources:

Though there are endometrial cancer disparities, patients and care partners can be proactive in educating themselves to help work toward optimal care. We hope you can take advantage of these valuable resources to aid in your endometrial cancer care for yourself or for your loved one.

Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

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Expert Perspective | Aggressive Prostate Cancer Research and Health Equity from Patient Empowerment Network on Vimeo.

What does research show about aggressive prostate cancer and health equity? Expert Dr. Ronald Chen from KU Medical Center discusses advanced prostate cancer research findings, the INNOVATE trial, and advanced prostate cancer disparities.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

 Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

 How Can Prostate Cancer Screening Access Be Increased?

How Can Prostate Cancer Screening Access Be Increased?

Transcript:

Lisa Hatfield:

Dr. Chen, can you provide an overview of your research focus around improving treatments and cure rates for patients facing an aggressive prostate cancer diagnosis? And also, two parts to this question. What inspired you to focus on the topic of health equity in relation to prostate cancer?

Dr. Ronald Chen:

Well, in terms of thinking about my research on improving treatments for advanced prostate cancer, and I’ll just define that to say, advanced prostate cancer, we usually think of as patients who have prostate cancer that has spread to other parts of the body. And so that’s often very aggressive. And, of course, in that situation, there’s still a lot of room for us to improve treatment so we can extend the survival and also improve the quality of life for these patients as much as we can. So a lot of room for improvement. And really, I think how we get to that improvement is mostly through clinical trials.

There’s a lot of promising new treatments that are more effective in tackling the cancer that also potentially can improve the patient’s quality of life, which is also a very important situation for advanced prostate cancer. And so a lot of my research really focuses on clinical trials to incorporate new treatments or new ways to do treatment for patients with advanced prostate cancer.

I’ll give one example. I lead a national trial that’s sponsored by the National Cancer Institute. It’s called NRG-GU008. We call it the INNOVATE trial. And this trial is specifically for patients who have prostate cancer that has spread to the lymph nodes. And if you have prostate cancer that has spread to the lymph nodes, that’s technically stage IV. And we, again, don’t do as well as we want to for these patients. And what this trial is testing is standard of care which would involve radiation and hormone therapy compared to standard of care, radiation/hormone therapy, plus a new drug that seems to hold promise for prostate cancer.

And, of course, we’re testing to see whether adding this new drug would reduce further spread of the cancer, improve survival, and how it impacts quality of life. And so, that’s a very important effort for no positive prostate cancer patients. And we are trying to enroll almost 600 patients, and so far we’re about 200 patients into it. So it’s an ongoing trial. It’s open across the country. And I really do hope that at the end of this trial, we’ll be able to offer a new option for these patients.

I’m involved in other trials around the country that are testing other treatments for advanced prostate cancer. And a lot of my focus on these other trials is also to sort of assess the impact of these treatments on the patient’s quality of life. I think quality of life is really important. We don’t just want to focus on being more aggressive and more aggressive and more aggressive without accounting for how the aggressive treatment really impacts a patient, how their quality of life is and side effects. And so that’s also another really important focus of my research and clinical trials.

In terms of my focus on health equity, health equity is a really important topic because even though we have pretty good treatment for prostate cancer, we know that not all patients have the same access to treatment, and not all patients have the same outcome with advanced prostate cancer. And so, studying why there is a disparity where some patient groups don’t do as well. We know for a fact that based on multiple studies, that Black patients with prostate cancer are more likely to die from prostate cancer twice as much as white patients with prostate cancer.

So we want to understand why, and once we understand why, we want to design interventions to reduce that gap, so then all patients have the same access and have good outcomes with this disease. And so I think that relates to access to screening. So we can diagnose cancer as early as we can. It relates to access to clinical trials, and that’s another really important aspect of my research focus.

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Advanced Prostate Cancer Treatments on the Horizon

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Advanced Prostate Cancer Treatments on the Horizon from Patient Empowerment Network on Vimeo.

 What advanced prostate cancer treatments are on the horizon? Expert Dr. Ronald Chen discusses emerging treatments that are under study, the advantages that the treatments might offer, and how patients can potentially gain access to the therapies.

Download Resource Guide

See More from START HERE Prostate Cancer

Related Resources:

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients?

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients?

 How Can Prostate Cancer Collaborative Care Be Coordinated?

How Can Prostate Cancer Collaborative Care Be Coordinated?

START HERE | Collaborative Prostate Cancer Care Resource Guide 

Transcript:

Lisa Hatfield:

Are there any promising treatments on the horizon that you are particularly excited about for advanced prostate cancer? And what types of questions do you recommend patients and their care partners ask of their providers?

Dr. Ronald Chen:

I want to answer this question from the perspective of a…as a radiation oncologist. I am often involved in a lot of research and clinical trials related to how we can potentially better use the tool of radiation for patients with prostate cancer and advanced prostate cancer. And there’s actually quite a bit of exciting development in radiation that I think I’m really looking forward to seeing the results of those types of research. One area of, I think, promising treatment is something called radiopharmaceutical therapy.

So oftentimes, we think of radiation as a patient…there’s a machine that delivers a targeted beam of radiation to a particular tumor. And that’s what we usually think about. But actually, there’s a new wave of radiation and how we deliver it called radiopharmaceuticals. And radiopharmaceuticals is almost like getting chemotherapy. It’s something that’s infused into the bloodstream, almost like chemotherapy, but the way this treatment work called radiopharmaceuticals is that you’re actually infusing molecules that will actually tag on to tumor cells in the body, and then as it tags onto tumor cells in the body, deliver radiation to that tumor cell.

And they’re actually…so actually, it’s kind of like chemotherapy delivering actually radiation instead of a drug. And there are actually already are several of these radiopharmaceutical agents that have been proven to be effective. And two of these have already been FDA approved that are now in use for prostate cancer. And we know they work and they extend survival. And so, I think that’s very exciting.

And one of them is called lutetium Lu 177 vipivotide tetraxetan (Pluvicto). You’re infusing a molecule that specifically tags on to prostate cancer cells in the body and delivers a little bit of radiation to that cell. And that extends survival for patients. It’s actually a very well-tolerated treatment as well as actually now commonly in use FDA-approved. And I think that now that we have a couple of these FDA-approved, they were proven to work, I really do think that this field of radiopharmaceutical treatment will continue to expand. There’ll be more and more of these in the future. There’s more in clinical trials, and I think there’ll be more and more available options in the future. And I think it’s really going to be a great way to potentially use radiation to help patients with advanced prostate cancer and other cancers in the future.

Another thing that I’m really excited about is, again, I think the balance between extending a patient’s life expectancy and balancing the quality of life impact. We know that for patients with advanced prostate cancer, a common way to treat this disease is with hormone therapy. And oftentimes, people are on hormone therapy for years and years and maybe lifelong. And we also know that hormone therapy in patients with prostate cancer can also have really quite a bit of side effects. It can make people fatigued, weight gain, it may have cardiovascular disease impact. And so hormone therapy, even though it’s effective for prostate cancer, really has a big quality of life impact on patients.

So one of the current years of research and in clinical trials is, can we, instead of having patients with metastatic prostate cancer, instead of having them on hormone therapy for life, could we potentially use radiation selectively in the spots of metastasis? And if we’re able to use radiation to treat particular spots of metastasis and that’s controlled, can we let the patient then have a break from hormone therapy, which I think would really have an important quality of life improvement.

And so selectively using radiation to treat a few spots, allowing patients a break from hormone therapy is another area of research. There’s actually a couple of clinical trials already done on this. And what it’s shown so far is that if patients have one to three to five, a few spots of metastasis, using radiation can actually give patients a break from hormone therapy for two, three or four years for many patients. And that can really have a major impact on improving quality of life without compromising their survival outcomes. So I think I’m really excited about those kinds of areas of research.

One more treatment option like radiopharmaceuticals, two treatments that not compromise the patient’s survival, but improve quality of life. I’m excited about those directions. Oftentimes, the new developments and new treatments, the promising treatments are first available through clinical trials, and only through participating in clinical trials do you have access to that before it becomes FDA-approved. And oftentimes, that could be a really good option to consider. So that’s why I think it’s really important to ask that for every patient.

Jamal’s Story: A Quest for Clarity in the Face of Advanced Prostate Cancer

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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

Related Resources:

What Impact Does Advanced Prostate Cancer Have on Lifestyle

 Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

 Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments 

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.

Becoming an Empowered and [ACT]IVATED After An Endometrial Cancer Diagnosis

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the endometrial cancer community. Endometrial cancer treatment options are ever-expanding with new treatments, and it’s important for patients and families to educate themselves about testing, factors in treatment decisions, treatment types, and disparities in care. With this goal in mind, we kicked off the [ACT]IVATED Endometrial Cancer program, which aims to inform, empower, and engage patients to stay abreast of the latest in endometrial cancer care.

Endometrial cancer is a cancer of the lining of the uterus where menstruation occurs. Abnormal bleeding is a common symptom of endometrial cancer. PEN is proud to add information about endometrial cancer to serve more patients and their families.

Endometrial cancer survivor Mikki Goodwin interviewed expert Dr. Ebony Hoskins, a board-certified gynecologic oncologist at MedStar Washington Hospital Center and Assistant Professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center. Mikki was initially diagnosed as stage III and progressed to stage IVB after a complete hysterectomy. Her treatment journey included a robotic hysterectomy, six rounds of chemotherapy, and 26 rounds of radiation.

Factors in Endometrial Cancer Treatment Options

Endometrial cancer care can have different options depending on the stage and other factors. Stage IV endometrial cancer survivor Mikki Goodwin spoke with expert Dr. Ebony Hoskins from MedStar Washington Hospital Center. Dr. Hoskins explained some of the factors that play into treatment decisions. “I think we follow kind of certain guidelines, if you will and providing standard of care and the first frontline therapy is pretty standard, right? In terms of advanced treatment, when patients recur and we have to look at alternate treatment therapies, I always look at the patient, I always look at what their medical problems are or any side effects. And, of course, the data to see how well are they going to do, what side effects and quality of life? There are numerous factors that are not just something looking in a book and say, ‘Okay, I’ll take A,’ right? Like I think we have to look at all of that and make a decision with our patients over undergoing the side effects, the efficacy, all of these things that are in mind when we talk to patients.”

Dr. Ebony Hoskins and Mikki Goodwin

Endometrial Cancer Disparities 

Dr. Ebony Hoskins shared about endometrial cancer disparities. “…we know that Black women are diagnosed pretty much at the same rate as white women, but have a two times higher risk of death. And so that alone is a big disparity. We also see…more aggressive tumor types in Black women…I think some of the clinical trials have recognized that there is a low number of patients in these trials advancing, and so there has been an increased effort in recruiting patients into these

trials. I think there is more work being done, to understand the biology and why there’s a difference. Me as a provider I will always think, ‘Oh, it’s because women went to the doctor late or access to care.’ And then I’m like, ‘Well, no, no, no these women have access to care. They have access to insurance. They went to the doctor right away.’ And so I think it’s very complex and deserves more study into it.”

Dr. Hoskins further explained about the importance of diversity in clinical trials. “…I think clinical trial participation is important in endometrial cancer. Number one, the rate of Black women getting advanced and aggressive endometrial cancer is on the rise. The representation in these trials are different. What’s different is not only the patient, the tumor type is different. How do we know that these same patients that’s not in the trials are going to respond to this treatment? That’s what I always ask…maybe they don’t respond as well, because that’s a different disease type, right?”

Marginalized patient groups are another area of concern for endometrial cancer patients, and Dr. Hoskins explained some of these patient groups. “…I think we could say minority populations, we can say Black women, we can say Hispanic women, and…marginalized, patients who don’t have access to care. Yes. I definitely think that you could or they could have a worse outcome, whether it’s for lack of access for someone who may not be insured or for patients who may be in this country without proper documentation getting the medical care that they may need…we’ve talked about race as being a risk factor, and again, access to care is certainly a risk factor…So disadvantaged populations could be patients who live in rural areas, patients with gender identity changes.” 

Solutions Toward Better Endometrial Cancer Care

Clinical trial participation is vital to develop effective endometrial cancer treatment for all patients. Dr. Hoskins had a recent interaction with an endometrial cancer patient and shared about her interaction.

“I recently had a patient that I referred to a clinical trial. And she really was struggling with whether she should do it or not. And one of the things that I said to her is, ‘I think it’s important. One, you’re going to have access to advanced treatment options that are not there now. And Black women are dying, and we need this information to know if this is the same.’ And she instantly was like, ‘I’m going, I’m doing it.’ And I think it’s very important that we have patients with access to trials.”

Dr. Hoskins also shared her perspective about patients advocating for their best care. “…it’s okay to find a different provider, or a doctor to make sure that you’re heard.…seek alternate care or another opinion. I think it’s very important that patients have a doctor that they trust and feel like they can ask questions for…I really don’t think it’s okay to be dismissed.”

Cancer survivor Mikki Goodwin has been involved with the Endometrial Cancer Action Network for African-Americans (ECANA), which has served as a partner for the [ACT]IVATED Endometrial Cancer program. Mikki shared her patient experience and the importance of empowering yourself as a patient. “Live on purpose every day, be your best advocate, record doctor appointments, you’ll never remember everything, so it’s good to be able to play it back, take one day at a time, rest when you need to rest that is part of healing, and stay hydrated. Having cancer is not a sentence to die, but a call to live intentionally. More than anything, stay positive, more than half the battle starts in the mind.”

Dr. Ebony Hoskins

[ACT]IVATED Endometrial Cancer Program Resources

The [ACT]IVATED Endometrial Cancer program series takes a three-part approach to inform, empower, and engage both the overall endometrial cancer community and endometrial cancer patient groups who experience health disparities. The series includes the following resources:

Though there are endometrial 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 endometrial cancer care for yourself or for your loved one.

[ACT]IVATION Tip:  

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re a endometrial cancer patient, or caring for someone who is living with it, PEN’s Empowerment Leads will be here for you at every step of your journey. Learn more.

 

Becoming an Empowered and [ACT]IVATED Breast Cancer Patient

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the breast cancer community. Breast cancer treatment options are ever-growing with research advancements in treatments and testing, and it’s important for patients and families to educate themselves with health literacy tools and resources on the latest information in breast cancer care. With this goal in mind, PEN kicked off the [ACT]IVATED Breast Cancer program, which aims to inform, empower, and engage patients to stay abreast of up-to-date information in breast cancer care. 

The [ACT]IVATED Breast Cancer program is aimed at newly diagnosed breast cancer patients, yet it is beneficial at any stage of disease. [ACT]IVATED Breast Cancer helps patients and care partners stay in the know about the latest options for their breast cancer, provides patient activation tools to help overcome barriers to accessing care, and powerful tips for self-advocacy, coping, and living well with cancer.

Breast Cancer Disparities

With more focus on disparities in breast cancer outcomes, research studies are starting to reveal actionable information on genetic differences. A recent study uncovered a racial disparity among cancer types that are hormone receptor-negative but HER2-positive. While treatment has been successful in white patient groups, the outcomes have been less successful in Black patient groups. The study also noted key gene mutations in the MAPK pathway occur more frequently in Black patients, which warrants further investigation.

Lisa Hatfield and Dr. Demetria Smith-Graziani

Breast cancer expert Dr. Demetria Smith-Graziani from Emory University School of Medicine shared updates about her breast cancer research. “…what we found is that regardless of the type surgery Black women were reporting more severe pain compared to white women, and so that’s what prompted me to engage in my most recent research project…the reason that I’m looking at those specific set of factors is because there are a number of psychological components to the way that we feel pain, such as anxiety, depression and yes trust that are linked to the way that we experience pain and how severe that pain is and how much that pain affects our lives.

Proactive Steps to Improve Breast Cancer Care

Knowledge gained from research studies can be utilized by patient advocates, and actions can be taken to improve breast cancer care and in the evolution of research efforts for all patients. Dr. Smith-Graziani discussed the importance of clinical trials in driving advancements in breast cancer research and treatments. “…all of the current treatments we have that are FDA-approved were approved because of the results from clinical trials that previous patients participated in…And we won’t get any new advancements in breast cancer treatments and come up with even better, more effective treatments, unless we are able to do more clinical trials with more patients. The other part is that in the past, most of the participants of clinical trials have been pretty much the same, they have been mostly white, mostly have insurance, mostly of a higher socioeconomic status, and those patterns continue today, we are still trying to get the patients in clinical trials to reflect the true population of the United States. And in order to know that clinical trials are effective for everybody, we need to have everybody in those trials.”

Dr. Demetria Smith-Graziani

Dr. Smith-Graziani also explained breast cancer subtypes and why it’s vital for patients to learn about their breast cancer subtype. “When we are looking at the cancer cells under the microscope, we look at specific proteins in these cells, and based on what proteins we see, we designate it as positive or negative for the estrogen receptor, the progesterone receptor, or a protein called HER2. When a cancer expresses the estrogen or progesterone receptor, that means that it feeds off of those hormones that your body makes, and that’s why we refer to it as hormone receptor-positive…And it’s important that we know what subtype of breast cancer you have, because it affects the type of treatment that you can get.”

Learning about family history of cancer is also another key to staying proactive in breast cancer care. Dr. Smith-Graziani explained, “So breast cancer definitely can be hereditary, we are aware of some forms of inherited breast cancers, and we have identified certain mutations in genes that are passed down along family lines, that increase the risk of getting breast cancer…ask your family members about their cancer history so that you’re aware of it, and then ask your oncologist if they recommend genetic counseling or testing.”

Another fundamental step in proactive breast cancer care is for patients to ask about their treatment plan. Dr. Smith-Graziani shared advice for patients. “…in addition to potential side effects are how long is my treatment meaning how long am I going to have to stay in the infusion center if I’m getting an IV medication? Or how many months of treatment do I need to get? And then how much time do I need to take off of work? Am I going to be able to work while getting my treatment, so it’s those little things which aren’t so little that are important to discuss, so that the patients can get the best overall picture about how each treatment will affect them in the short and the long term.”

Dr. Smith-Graziani stressed the value of getting your questions answered and also the value of additional expert opinions. “I think it’s important for patients to be as informed as possible to make sure that they are getting all of their questions answered by their doctor, and if you don’t feel like your questions are getting answered, if you don’t feel like your concerns are being appropriately addressed or acknowledged, please make sure that you get a second or a third opinion and talk to another doctor to see if they can answer your questions.”

[ACT]IVATED Breast Cancer Program Resources

The [ACT]IVATED Breast Cancer program series informs, empower, and engage both the overall community and breast cancer patient groups who experience health disparities. The series includes the following resources:

[ACT]IVATED Expert Interviews

[ACT]IVATED Resources

Though there are breast 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 breast cancer care for yourself or for your loved one.

[ACT]IVATION Tip:  

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re a breast cancer patient, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey. Learn more.

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How Does Hormone Therapy Impact Breast Cancer Treatment?

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How Does Hormone Therapy Impact Breast Cancer Treatment? from Patient Empowerment Network on Vimeo. 

For breast cancer patients who have been on hormone therapy, what do they need to know? Expert Dr. Demetria Smith-Graziani explains how hormone therapy works, when it’s  most often used in the treatment process, and recommended questions for patients to ask their doctor.

Demetria Smith-Graziani, MD, MPH is an Assistant Professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Learn more about Dr. Smith-Graziani.

[ACT]IVATION TIP

“…ask how long their formal and therapy is recommended and what potential side effects there are of their treatment.”

Download Guide  |   Descargar Guía en Español

See More from [ACT]IVATED Breast Cancer

Related Resources:

An Overview of Breast Cancer Subtypes | Tips for Being Proactive
 
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Pain Outcomes Among Black Women with Early Stage Breast Cancer After Mastectomy

Transcript:

Lisa Hatfield:  

Dr. Smith, many women are on or have been on hormone therapy. How does hormone therapy play into breast cancer treatment?

Dr. Demetria Smith-Graziani:

Okay, so for breast cancers that feed off hormones in your body, specifically breast cancers that are positive for the estrogen and progesterone receptors, we use anti-estrogen therapy to treat the breast cancer. And these are medications that lower the amount of estrogen in your body so that it no longer provides that food source to be cancer cells, and they will not grow and develop in the same way as if there is estrogen present.

We usually use this hormone therapy or anti-estrogen therapy after you’ve had treatment such as surgery or radiation or chemotherapy, and we usually keep patients on those medications for anywhere from five to 10 years to help reduce the risk of their breast cancer coming back up to 50 percent.

We also use hormone therapy for patients with stage IV or metastatic breast cancer as part of their long-term treatment, so my activation tip for patients is to ask how long their formal and therapy is recommended and what potential side effects there are of their treatment.

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What Role Does Hormone Therapy Play in Endometrial Cancer?

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What Role Does Hormone Therapy Play in Endometrial Cancer? from Patient Empowerment Network on Vimeo.

What part can hormone therapy play in endometrial cancer treatment? Expert Dr. Ebony Hoskins explains patient situations that typically work well with hormonal therapy and shares advice for patients to help ensure their best care.

Dr. Ebony Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center.

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What Is the Role of Surgery in Treating Endometrial Cancer?

Transcript:

Mikki:

How does hormone therapy play in endometrial cancer treatment?

Dr. Ebony Hoskins:

I think there is a role for some patients for endometrial cancer with use of hormonal therapy, I would typically say either patients may not need any treatment at all or may need more in, I should say more adjuvant treatment such as chemotherapy or radiation. There are sometimes I use hormonal treatment in patients who may have a recurrence that do not have symptoms, and they’re looking for an option with minimal side effects and in…not inconvenient for them. So I don’t use it say on a daily or weekly basis, but there are some times where I may use hormonal treatment.

Mikki:

Awesome. Any things that I should ask the doctor if that’s presented to me? Or any tips that I should have or should have had? [laughter]

Dr. Ebony Hoskins:  

I think in terms of hormonal things, the treatment or any treatment for that matter is understand what the options are, and also recognizing options aren’t just like something that’s on the menu that you get to choose what you have. But hopefully if you have a relationship with your doctor that you’re getting one, number one, the standard of care and then to discuss what the options are in specifically for you as a patient or anybody that’s recently diagnosed.

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Breast Cancer Clinical Trials 201 Resource Guide

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Thriving With Breast Cancer Resource Guide

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Does Prostate Cancer Hormone Therapy Cause Cognitive Issues?

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Does Prostate Cancer Hormone Therapy Cause Cognitive Issues? from Patient Empowerment Network on Vimeo. 

Could hormone therapy for prostate cancer lead to cognitive issues? Expert Dr. Tanya Dorff discusses whether there’s a link and explains which treatments may be helpful for cognitive issues.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 

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Transcript:

Katherine:

We received some audience questions prior to today’s webinar, and I’d like to go through some of them with you. Bob asks, “Does androgen deprivation therapy (ADT) cause cognitive issues?” 

Dr. Dorff:

So, androgen deprivation therapy is another way of saying hormone therapy. We’re lowering testosterone, which is an androgen, and the question about cognitive issues is a good one. If you look in the literature, it’s not been well-documented, and part of that is because our patients tend to have age and other comorbidities that can lead to changes in cognition happening at the same time as they’re being treated for prostate cancer, but also because the tools just haven’t been very good. 

The tests where we measure how your brain is working have traditionally not been very good. There are some better tools that have been developed, and we’re hoping to be able to – with some ongoing studies – better define are there cognitive changes? If so, how severe are they, how common are they, are they more common with one drug versus another? Very basic questions. 

I will say in my own practice, after 15 years of treating prostate cancer, I do believe that some patients experience cognitive changes during ADT. They can be mild, like taking longer to remember someone’s name or walking into a room and forgetting why you’re there, which, frankly, happens to all of us when we’re not having our best days, but obviously, I do see that a little bit more with prostate cancer patients who are receiving hormonal therapy.  

For some of my really high-functioning patients, it can be helpful to use a drug that treats attention because some of the cognitive dysfunction actually ends up being an issue with attention. So, we use drugs like methylphenidate (Ritalin) or dextroamphetamine mixed salts (Adderall) to support patients who need to be really focused, and I’ve had many patients tell me that that has made a huge difference for them, so it’s not going to solve the overall changes that may happen in the brain on the basis of the hormonal deprivation, which we know happens from animal models, but it can help in the short term so that men can continue to function at a high cognitive level, despite ADT, when needed. 

What Are Advanced Prostate Cancer Treatment Options?

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What Are Advanced Prostate Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

What is advanced prostate cancer and how is it treated? Expert Dr. Tanya Dorff explains advanced prostate cancer and discusses available treatment approaches, including clinical trial considerations.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.

 

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Transcript:

Katherine:

First, what does it mean to have advanced disease? 

Dr. Dorff:

Advanced prostate cancer signals cancer that’s come back after curative intention or has presented de novo in a way that means we don’t currently have a tool to cure it. That’s at least how I view advanced prostate cancer. You could take a broader definition and consider some high-risk localized patients who need multimodal therapy, but to me, it’s really signaling a shift from something we’re aiming to cure versus something we’re aiming to manage, so that can manifest just as a PSA that’s rising, what we call biochemical recurrence, or it can manifest as visible metastatic disease. 

Katherine:

What does “locally advanced mean? 

Dr. Dorff:

So, “locally advanced” means that it hasn’t metastasized, but it might be involving the local structures, like the seminal vesicles or the bladder or some of the regional lymph nodes, the pelvic lymph nodes. 

Katherine:

How is advanced prostate cancer treated? 

Dr. Dorff:

The cornerstone of treatment for advanced prostate cancer has really been hormone therapy. I think there’s a lot of negative stuff out there on the internet about hormone therapy that I think does a disservice to patients because hormone therapy is truly very, very effective and, for many men, can be quite livable. 

I have patients who live more than a decade on hormone therapy, and they’re running their businesses and they’re raising their grandkids, they’re traveling, they’re running 10Ks, they’re doing all the things that they might want to be doing. That’s not to say there aren’t side effects, but hormone therapy is an effective cornerstone, and I really hope people won’t dismiss it offhand because of the negative things they’ve heard or read about it. 

Katherine:

What about other treatment classes?  

Dr. Dorff:

Most of our other treatments are really layered on top of hormone therapy. We may get to a point – 10 years from now, I don’t know, sometime in the future – when we don’t start with the hormone therapy, so a lot of patients come in asking about the new radiopharmaceutical, the Lutetium-177-PSMA that got approved last year, or about whether chemotherapy can be used. They can be, but they’re really layered on top of hormone therapy, so the hormone therapy is the first treatment, it’s the most effective right now, and then it’s continued as we swap out – we add a novel hormonal agent like abiraterone (Zytiga), or enzalutamide (Xtandi), or one of the others. 

When that is no longer effective, we swap that out, we might use chemotherapy or the radiopharmaceutical. There’s also an immunotherapy that’s been around for more than a decade called sipuleucel-T, and now there’s the targeted therapies – the PARP inhibitors – as well for select patients. 

Katherine:

Where do clinical trials fit into treatment?  

Dr. Dorff:

That’s a great question. I’m so glad you asked. Clinical trials some people mistakenly believe are your last choice, like you’ve gone through every single treatment we have, and then you go to a clinical trial. That’s not the case. Some of the biggest advances in prostate cancer have been when we’ve taken drugs that work in a more advanced resistance setting, like a second- or third-line, and when we move them right up front, first-line, we dramatically amplify their benefit. We dramatically improve survival. 

So, if we don’t think about a clinical trial in the first line, we’re going to miss the opportunity to not only develop those new treatment paradigms, but actually participate in them ahead of when they become the new standard of care down the road. 

Another misconception that people have often about clinical trials is that they are always randomized, there’s always a flipping of the coin in assignment of different treatments, and that they may include a placebo. So, most of our clinical trials at this point do not include placebo. Because we have so many effective treatment options, we’re more and more frequently comparing either two drugs against one, so everyone’s getting at least one effective drug, or we’re not comparing at all, but everyone’s getting some new treatment or some combination of treatments when we’re working out dosing in that scenario, like a Phase II. 

So, clinical trials are really an option at any stage of prostate cancer, even at diagnosis for localized disease all the way through, and truly, I hope people would consider looking at those as options because that’s where some of the most innovative treatment options are going to become available to them. 

Key Questions Patients Should Ask Before Participating in a Breast Cancer Clinical Trial

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Key Questions Patients Should Ask Before Participating in a Breast Cancer Clinical Trial from Patient Empowerment Network on Vimeo. 

What questions should breast cancer patients ask their healthcare team before entering a clinical trial? Dr. Adrienne Waks shares her advice and key questions that breast cancer patients should ask before participating in a trial.

Dr. Adrienne Waks is the Associate Director of Clinical Research at Dana-Farber Cancer Institute. To learn more about Dr. Waks click, here.

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Related Resources:

What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

 Should Breast Cancer Patients Consider a Clinical Trial?

 Hesitant to Join a Breast Cancer Clinical Trial? What You Should Know.

Transcript:

Katherine:

What are some key questions patients should ask their healthcare team about participating in a trial?  

Dr. Waks:

Yeah, I think there’s a couple of major ones. What’s the rationale behind this trial? Why do you think it might be better than the standard? What do I stand to gain in terms of effectiveness? Do you think it could be worse than the standard of care, and why or why not? So, basically, trying to capture well, what’s the rationale and the potential benefit of a trial? We’re always doing trials to try to give the patient some sort of benefits, so very reasonable to ask about that. Number two, of course, is what are the extra side effects that could be associated with participation on this trial, and how much do you know about them? 

Is this a drug that you’ve used for five years in  a different context or is it a pretty new drug and you don’t have a great sense, so number two, what are the side effects potentially associated with participation on the clinical trial? And then the third thing I would say is what is the extra burden on me going to be, not in terms of side effects but in terms of life disruption, time spent and things like that? What are those extra burdens going to be if I participate in a clinical trial will I have to get extra scans, will I have to do extra visits, will I have to get extra biopsies?  

You know, there are a number of clinical trials that require biopsies or have optional biopsies at least because in addition to studying a new drug we’re trying to understand in whom does it work and in whom does it not. And so, we want to have biopsies to help us understand that, but a patient should obviously want to be informed about those biopsies.  

So, what will the extra on me look like? And then, we always try as investigators in a clinical trial to put in place as best we can some ways to sort of mitigate the burden on patients. Like, well if I have to have a biopsy, can my parking be covered that extra day or what accommodations can be made to try to mitigate some of the disruption or the extra time? So, I would say those are sort of the three or four main things to ask about. 

Should Breast Cancer Patients Consider a Clinical Trial?

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Should Breast Cancer Patients Consider a Clinical Trial? from Patient Empowerment Network on Vimeo. 

Dr. Adrienne Waks, a breast cancer expert, discusses why and when patients should consider participating in a clinical trial.

Dr. Adrienne Waks is the Associate Director of Clinical Research at Dana-Farber Cancer Institute. To learn more about Dr. Waks click, here.

See More from Breast Cancer Clinical Trials 201

Related Resources:

What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

 Hesitant to Join a Breast Cancer Clinical Trial? What You Should Know.

 Key Questions Patients Should Ask Before Participating in a Breast Cancer Clinical Trial

Transcript:

Katherine:

Why should a breast cancer patient consider participating in a clinical trial?  

Dr. Waks:

It’s a great question. I always tell patients and, of course, I work at Dana Farber, so we participate and I come to this question with a bias and a huge enormous amount of belief in the importance and the value of clinical research, but I honestly would encourage all patients to encourage clinical trials at all points in their breast cancer care. I think that often patients think that clinical trials are something that your doctor will bring up when you’re scraping the bottom of the barrel in terms of cancer treatment options. 

You know, you’ve exhausted everything that’s good and now we’re going to give you treatments that were given to the mice last week or something like that. But that could not be further from the truth. At every stage of breast cancer treatment whether you have a stage I breast cancer or you have a metastatic breast cancer, all of the current standards for how we treat patients and all of the data that we have to tell us you should use those treatments because they’re beneficial, all of those standards and those data come from patients who came before you who participated in clinical trials. Those were not patients who were at the very last stage of their cancer treatment.  

They were patients who could have been newly diagnosed with a Stage I breast cancer, newly diagnosed with metastatic breast or something like that. We change the standards of how we treat patients at all stages by running clinical trials. 

In breast cancer, we have such effective treatments that it’s virtually unheard of that we would compare something to nothing. There’s almost never a time in breast cancer treatment when it’s ethical to offer nothing as a therapy, so most of our clinical trials are not saying you might get a placebo sugar pill and that’s it. It’s saying either you’ll get Arm A, which is this agent or you’ll get A plus B which is the standard plus something else. So, it’s not like by participating in a clinical trial you’re omitting standard therapy. What we’re generally trying to do is give you standard therapy and something better or replacing a part of standard therapy with something we think is going to do better.  

Every time we design and implement a clinical trial, we’re obviously doing so because we hope that we can improve upon the current standard. So, there certainly isn’t a trial for everybody at every stage in their treatment course, and it’s absolutely fine if there’s no trial ongoing that’s the right fit for you, but I think it’s always a good question to ask. You know, is there a trial I should consider here? 

Hesitant to Join a Breast Cancer Clinical Trial? What You Should Know.

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Hesitant to Join a Breast Cancer Clinical Trial? What You Should Know. from Patient Empowerment Network on Vimeo. 

What do breast cancer patients need to know about clinical trials? Breast cancer expert Dr. Adrienne Waks addresses common concerns and misconceptions about trial participation.

Dr. Adrienne Waks is the Associate Director of Clinical Research at Dana-Farber Cancer Institute. To learn more about Dr. Waks click, here.

See More from Breast Cancer Clinical Trials 201

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 Should Breast Cancer Patients Consider a Clinical Trial?

 Key Questions Patients Should Ask Before Participating in a Breast Cancer Clinical Trial

Transcript:

Katherine:

What would you say to patients who may be hesitant to participate in a trial? 

Dr. Waks:

That’s a great question. I think many patients are at first hesitant to participate in a trial, which is natural. You know, there’s already so many overwhelming and scary decisions to be made when it comes to getting a breast cancer diagnosis or any cancer diagnosis that introduce a whole other set of discussions. Instead of variables, it’s found extremely overwhelming and adds another level of what might feel like uncertainty, so I think that’s a completely natural response is to be hesitant and overwhelmed if somebody brings up the clinical trial. 

But what I would try to address in terms of patient concerns is number one, I think that patients worry that if they are approached about a clinical trial that means there aren’t other good options available to them which not always, but almost always is actually far from the truth. Usually it’s just because we have a standard, we think it’s pretty good but we’d like to do better than the standard and participating in a clinical trial is how we do that. 

So, first I always, of course, assure patients this clinical trial is not like something we’ve never tested before and we know nothing about it, and it’s not because I don’t have other options for you. It’s just because I want to do better than the existing options and often it’s looking at an agent that’s already FDA-approved, but we’re trying to combine it with a different agent or something like that. 

So, obviously, number one try to give patients some reassurance about what we already know about the trial agents and also reassure them about the fact that we don’t anticipate the efficacy of their treatment overall would be compromised. Rather we’re trying to improve upon that. So, I think that’s probably the most common concern that I hear from patients, but, of course, as providers it’s our job to understand from that specific patient who’s in front of you what are your particular concerns about clinical trials in general. And are those misconceptions that I can dispel for you, or are they real things that some women on trials do experience in which case we should talk through them and decide if it’s the right fit for you.  

It’s almost always true that participating in a clinical trial does come with what I always call a few other hoops to jump through, because when you’re participating in a clinical trial we want to learn from your experience. So, we do want women to complete questionnaires about their side effects or have a second appointment one week later so that we can do an extra side effect check-in or something like that. You know, do an EKG that they wouldn’t otherwise need. So, there can be and often are some additional logistical or scheduling components that come with participation in the trial. 

Again, we would want a patient to voice how that might or might not fit into her life and be very up front about what could be expected in terms of additional asks which can be extremely minimal or sometimes more disruptive depending on the trials. So, obviously, we just need to have a conversation about that.