Tag Archive for: hormone therapy

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

Jamal’s Story: A Quest for Clarity in the Face of Advanced Prostate Cancer from Patient Empowerment Network on Vimeo.

Advanced prostate cancer patient Jamal’s diagnosis came as a shock in his mid-50s. Watch as he shares his experience from diagnosis, a second opinion, and treatment and his key advice for staying on the path of patient empowerment.

Disclaimer: This cancer patient story has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More From [ACT]IVATED Prostate Cancer

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

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

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?

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.”

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Related Resources:

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

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?

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.

Download Guide  |  Descargar Guía en Español

See More from [ACT]IVATED Endometrial Cancer

Related Resources:

How to Explain Endometrial Cancer to Newly Diagnosed Patients

How to Explain Endometrial Cancer to Newly Diagnosed Patients

What Disparities Exist in Treating Patients with Endometrial Cancer

What Disparities Exist in Treating Patients with Endometrial Cancer?

What Is the Role of Surgery in Treating Endometrial Cancer

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?

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.
 

Related Resources:

Tools for Partnering in Your Prostate Cancer Care

Thriving With Prostate Cancer: What You Should Know About Care and Treatment

Managing the Side Effects of Advanced Prostate Cancer Treatment


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?

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.

 

Related Resources:

What Is Advanced Prostate Cancer?

What Questions Should Prostate Cancer Patients Ask About Clinical Trials


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

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.

See More from Breast Cancer Clinical Trials 201

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?

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.

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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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. 

What Are the Treatment Options for Early Stage Breast Cancer?

What Are the Treatment Options for Early Stage Breast Cancer? from Patient Empowerment Network on Vimeo.

Breast cancer expert Dr. Adrienne Waks reviews available treatment approaches for patients with early stage breast cancer and explains the role of sub types when choosing a treatment plan.

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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Transcript:

Katherine:

Well, let’s get into the specific treatment options that are available for breast cancer patients. Could you tell us about those?  

Dr. Waks:

So, fortunately, the answer to that question is enormous, because we have so many effective treatment options in breast cancer and generally our patients do very well in the long term when they are diagnosed with early stage breast cancer, so stage I or II or III breast cancer.  

That might involve the breast, it might involve the lymph nodes under the arm, but it hasn’t traveled anywhere else in the body. So I’ll set aside metastatic breast cancer and just talk about stage I, II, and III. 

So, as you may know, we think about as medical oncologists we completely separate treatment considerations for three different subtypes of breast cancer. Those are hormone receptor-positive, HER2-positive and then triple-negative. So, again, highlighting just important developments and not really the overall treatment planning for each of those subtypes, in ER-positive disease or estrogen receptor-positive disease hormonally-driven, estrogen-driven breast cancer – those are all sort of terms for the same thing, I think there have been a couple of important developments over the last few years.  

Probably the most important recent one is the new understanding and demonstration that the CDK4/6 inhibitor abemaciclib, the brand name of that drug is Verzenio. 

That drug when we administer it for two years after a patient has had their surgery and in conjunction with alongside the antiestrogen medicines; the antiestrogen medicines are usually done for a minimum of five years, when we add on to that the CDK4/6 inhibitor abemaciclib, we see that for women with higher risk disease, so maybe some lymph node involvement or a large tumor in the breast or both that the addition of the Verzenio, the abemaciclib seems to decrease their risk of recurrence of breast cancer a couple of years out. So, that’s been an important exciting development. 

Again, not for all women within early stage estrogen-driven breast cancer, but for a little bit more advanced early stage disease like lymph node involvement. You know, we’re obviously always looking for ways to reduce that risk of recurrence for women who have a little bit more risk at diagnosis and the addition of abemaciclib was an exciting and welcome addition to our toolkit there. 

In HER2-positive disease, which is about 20 percent of breast cancers overall, I think what the recent years have brought us is increasing understanding that in many cases we give women too much chemotherapy and that we need to be – so, here it’s less about adding on. Like the Verzenio example I was just talking about and more about individualizing and figuring out in whom and how we can pull back from sort of the kitchen sink approach that we take often to treating a HER2-positive early stage breast cancer and be more thoughtful and more personalized in the amount of treatment that we give women with HER2-positive breast cancer. 

The reason for that is that we’re basically 20 years into understanding that for HER2-positive breast cancers we can treat those cancers very effectively with anti-HER2 antibody drugs like trastuzumab or Herceptin. We didn’t even know that until 20 years ago. And so, Herceptin, trastuzumab and similar drugs have really revolutionized how effectively we can treat women with HER2-positive breast cancers. And so, at this point, it’s becoming more and more clear that we can really lean more on our arsenal of anti-HER2 targeted therapies like Trastuzumab. Pertuzumab (Perjeta) is another one and trastuzumab MTNC and TDM1 is another one. 

So, we have all these excellent smart targeted treatments for women with HER2-positive disease, but yet the standard of care is still to give all those good rational targeted treatments with a whole bunch of chemotherapy that comes with a lot of side effects. 

I think more and more we’re figuring out that we can lean more on our anti-HER2 treatments and require less of the really side effect heavy chemotherapy, but how do we do that thoughtfully? We obviously don’t want to undertreat anybody, so how do we do that thoughtfully? How do we pick out the women who only need the anti-HER2 treatment and can get away with less chemotherapy. I think that’s really what’s exciting in HER2-positive early stage breast cancer right is how do we individualize and take advantage of targeted agents that we have? 

And then finally, in the third subtype of breast cancer which is triple-negative breast cancer which accounts for about 10 percent of breast cancers, the most exciting development there clearly in the last year or so is the realization and the demonstration in randomized clinical trial that we can improve outcomes for those women if we give them not just chemotherapy but also chemotherapy combined with immunotherapy and specifically the immunotherapy agent called pembrolizumab or Keytruda. 

So, up until a year or two ago, the standard for a stage I or II or III triple-negative breast cancer was to get a multiagent chemo regimen and chemo was really the only type of option we had to treat those triple-negative breast cancer patients and now we know from a major important clinical trial called Keynote 522, that if we take a standard chemo backbone and add Pembrolizumab immunotherapy onto it, that we can help those women do better in the long term. So, that’s really a pretty new in the last one or two years standard of care for triple-negative breast cancer. 

And I guess the last thing I’ll say is not about one of those three subtypes of breast cancer but specifically for women with a BRCA1 or BRCA2 mutation associated with their breast cancer, which is a minority. It’s about 5 percent of breast cancer patients. Obviously, the proportion changes depending on your subtype of breast cancer and your age when you’re diagnosed, but for women who have a breast cancer associated with BRCA1 or 2 mutation and have a higher risk or early stage breast cancer. 

So, again, they have a number of lymph nodes involved or a big tumor in the breast or something like that, we now know that we can add on one year of the PARP inhibitor medication called olaparib or Lynparza to the postoperative treatment of those breast cancer patients in addition to whatever other treatment they got; the antiestrogen pills, the chemotherapy, or a combination of those two, and with the addition of olaparib or Lynparza for a year that we can again see better long-term outcomes for those patients and help them avoid recurrences. 

So, that’s not a majority of breast cancer patients but is a targeted treatment that we’re very excited about that definitely makes an important contribution to reducing risk for women with a BRCA1- or BRCA2-associated cancer or men for that matter. I’m saying women, but it could absolutely apply to men. 

How Is Metastatic Breast Cancer Treated?

How Is Metastatic Breast Cancer Treated? from Patient Empowerment Network on Vimeo

Breast cancer expert Dr. Adrienne Waks discusses treatment approaches for metastatic breast cancer and explains how research is evolving.

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 Thrive Breast Cancer

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

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What Are the Treatment Options for Early Stage Breast Cancer?


Transcript:

Katherine:

What about people who have metastatic disease? What treatment advances are available for them?  

Dr. Waks:

Yeah. You know, I think that’s an incredibly important question and a totally different set of discussions than we have with women with early stage breast cancer and unfortunately and unacceptably at this point for a woman diagnosed with metastatic breast cancer still typically that can become a life-threatening diagnosis. 

So, it’s exceptionally important that we rapidly improve the treatment options that we have for women with metastatic breast cancer. Maybe everybody says this every year, but I think that this year, 2022, has been a particularly exciting year in terms of advances that we’re making in the treatment of metastatic breast cancer, really of all subtypes. I would say the most exciting class of drugs or type of drugs that’s coming out in breast cancer and in all malignancies honestly, is called antibody drug conjugates, which is to say an antibody. So, a molecule that’s targeted to some particular approaching on a cancer cell surface and then is attached to or conjugated to a chemotherapy molecule.  

So, the antibody is like a smart delivery system directly to the cancer cell for what’s call a payload, basically like a sort of action molecule or the killer molecule, which is the chemotherapy. 

Those kinds of antibody drug conjugants have made a huge impact in recent years in improving outcomes for women really with all subtypes of breast cancer, so that drug class I think is a very exciting one to watch in general. In terms of specific recent developments in metastatic breast cancer, so probably the biggest blockbuster development over the past year and really over just the past three months is the understanding that we can break out a subtype of metastatic breast cancer that we really didn’t even talk about before which is called HER2-low breast cancer. So, before if you asked me in May of 2022, there really were only two types of HER2 readouts for a breast cancer tumor. 

There was a HER2-negative breast cancer tumor and there was a HER2-positive breast cancer tumor and as I already told you, the HER2-positive accounts for about 20 percent of breast cancers overall. The other 80 percent are HER2-negative. And so, historically, again you asked me three months ago I would have said if you’re HER2-positive and that 20 percent will give you these different HER2-directed treatments and if you’re not, we can’t use those. And what’s changed is that we’ve developed new antibody drug conjugants. So, drugs that are targeted against in this case the protein HER2 that seem to be so effective and work so well, that you don’t truly have to be HER2-positive.  

You can be HER2-low and still benefit from these treatments, which is to say your cancer has a little bit of HER2 protein on the surface of the breast cancer cells but not a lot. So, not enough to make it positive but enough to make it low in its designation. 

That’s actually a large proportion of breast cancer patients. It’s over 50 percent of breast cancer patients, so it’s significantly more than HER2-positive, so a large proportion of breast cancer patients actually fit into this new category called HER2-low and we now know from data that were presented in June of 2022 and then published in the New England Journal of Medicine, which is our biggest most high profile academic medical journal, we know that for patients who fall into that HER2-low category, again that’s more than 50 percent of breast cancer patients, that they can, if they have a metastatic breast cancer, benefit from this new antibody drug conjugate called trastuzumab deruxtecan (Enhertu).  

When it was compared to the existing chemo options we have for those patients which do have some efficacy but nonetheless, when trastuzumab deruxtecan was compared to the existing chemo options, it clearly looked better for patients with HER2-low breast cancer. So, that was not just an exciting advance in terms of new treatment options which we always love to be able to offer to patients but also in terms of breaking out this entirely new designation and subcategory that captures more than half of our metastatic breast cancer patients and helping us to offer them something new and hopefully will be a pathway for other drugs to be developed in this space and for this new subcategory. 

So, that was very exciting. I’ve been talking about it with patients all the time in the past just three months since those data came out.  

You know, a second antibody drug conjugate that has also been very exciting in recent months and recent years is called sacituzumab govitecan which Trodelvy is the brand name of that one. That’s an antibody drug conjugate that’s targeted against a different protein on the cell surface that’s targeted against the protein Trop-2, so that’s where the Trodelvy comes from. It’s targeting Trop-2. That’s an antibody drug conjugate that we’ve known for probably three or more years now can be very effective in triple-negative metastatic breast cancer. So, we’ve had that option for a number of years in metastatic triple-negative breast cancer. 

But again, just in the past few months have gotten good and exciting data that this Trodelvy or sacituzumab drug also works in estrogen-driven breast cancers.  

And so, it’s giving another option to patients with not just triple-negative but also estrogen-driven breast cancer. So, that was another very recent development just in the last three months or so. 

Katherine:

That’s really exciting. 

What Do You Need to Know About Metastatic Breast Cancer Genetic Testing?

What Do You Need to Know About Metastatic Breast Cancer Genetic Testing? from Patient Empowerment Network on Vimeo.

Why is it important to ask about metastatic breast cancer genetic testing? Find out how test results could reveal more about YOUR breast cancer and could help determine the most effective treatment approach.

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Transcript:

Why should you ask your doctor about metastatic breast cancer genetic testing?

The National Comprehensive Cancer Network – also known as the NCCN – recommends that every metastatic breast cancer patient undergo genetic testing. The test results can help predict how your cancer may behave and could indicate that one type of treatment is more effective than another.

This testing identifies specific gene mutations, proteins, chromosomal abnormalities, and/or other molecular changes that are unique to YOU and YOUR breast cancer.

There are two main types of genetic tests used in breast cancer:

  • Germline or hereditary genetic testing, which identifies inherited gene mutations in the body. These mutations are present from birth, can be shared among family members and be passed on to subsequent generations.
  • The second is somatic or tumor genetic testing, which identifies markers that are unique to the cancer itself. It is also commonly referred to as genomic testing, biomarker testing, or molecular profiling. Somatic mutations are NOT inherited or passed down from family member to family member.
  • Depending on your history, your doctor may order one–or both–of these types of tests.

So why do the test results matter?

  • If you have specific gene mutations – such as the BRCA1 or BRCA2 inherited gene mutations – it could indicate that a targeted treatment approach may be the most effective option. For example, there are two oral targeted therapies that are approved specifically for use in metastatic patients with BRCA1-positive or BRCA2-positive breast cancer.
  • Results of these tests may also help you to find a clinical trial that may be appropriate for your particular cancer.
  • Additionally, results from germline genetic testing may suggest that close family members should also be tested to determine their risk.

How can you insist on the best breast cancer care?

  • First, always speak up and ask questions. Remember, you have a voice in YOUR breast cancer care.
  • Ask your doctor if you have had–or will receive–genetic testing, including germline and somatic testing.
  • If you have already undergone genetic testing, bring a copy of your results to your current doctor, so they can understand your results and determine whether additional testing is needed.
  • Have a discussion with your healthcare team about the test results – including which markers were detected and how results may impact your care and treatment plan.
  • Ask whether your family members should meet with a genetic counselor or undergo testing to help gauge their risk of developing breast cancer.
  • And, finally, bring a friend or a loved one to your appointments to help you process and recall information.

To learn more about breast cancer and to access tools for self-advocacy, visit powerfulpatients.org/breastcancer