Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps

Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps from Patient Empowerment Network on Vimeo.

How can endometrial cancer awareness be increased around diagnosis and access disparities? Experts Dr. Charlotte Gamble from MedStar Washington Hospital and Dr. Radhika Gogoi from Karmanos Cancer Institute discuss issues with provider referrals, endometrial cancer incidence rates, symptoms that need patient awareness, and how to guard against missed diagnoses.

See More from EPEP Endometrial Cancer

Related Resources:

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?

HCP Roundtable Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

Endometrial Cancer Care | Key Barriers and Solutions

Endometrial Cancer Care | Key Barriers and Solutions

Transcript:

Dr. Nicole Rochester:

Dr. Gamble, can you speak to awareness? You spoke about the fact that sometimes patients are referred to perhaps the wrong provider. You know, there was that sent, you mentioned to a general surgeon instead of to a gynecologic oncologist. And so we can imagine that there may be some challenges both in the primary care setting and perhaps even among general obstetrician gynecologists.

So can you speak to how we can elevate the level of awareness to enhance healthcare provider awareness of diagnosis and access disparities and really appropriate referral patterns?

Dr. Charlotte Gamble:

Yeah, absolutely. I think it’s a tough question. I think it’s, again, like all things, it’s a little bit nuanced. Sometimes, again different levels of providers, different parts of the country, everybody practices a little bit differently. So everyone knows once you get a cancer diagnosis, you should probably go to a cancer specialist. And so generally, that’s coming to a gynecologic oncologist generally, or that’s sometimes that’s going to a medical oncologist.

But occasionally, sometimes patients will have symptoms where it’s just abnormal bleeding, and they’re seeing a general gynecologist who then does a hysterectomy, and there’s a surprise diagnosis of an endometrial cancer. Usually they’re, hopefully, they’re not making it too much to kind of the general surgery pathway our general surgery colleagues are awesome, but it’s kind of a different kettle of fish and the type of hysterectomy that’s needed and the type of specific surgery that’s needed to include lymph node assessment is different for somebody who’s getting a cancer surgery for uterine cancer compared to, let’s say, for fibroids or for adenomyosis or a non-gynecologic cancer situation.

I think, again, I’m on the receiving end of all of this, so I see patients who have made it to my doorstep and gotten kind of through the hoops and the barriers, but there’s definitely those out there that we know from the data somehow ended up with their surgery, not exactly in the appropriate hands.

And it’s hard to say, I don’t know if I actually even have advice for like how this is supposed to happen. I think we need to understand kind of the as Dr. Gogoi alluded to earlier, just kind of how prevalent endometrial cancer is right now and how the rates are rising and that abnormal bleeding has to be taken very seriously. And the thing that I harp on the most is a normal ultrasound does not mean there’s nothing else to explore there. There has to be a tissue biopsy.

And really impressing that on both patients as well as the first kind of people that they see, either their primary care doctor or even a nurse practitioner, a physician assistant. Just because there’s a normal ultrasound does not mean that your work is done. And we have studies to really demonstrate how that can delay patient’s care and missed diagnoses can happen. So it’s hard to answer your question, to like, how do we fix the referral pathway system? I don’t know the answer to that, and maybe Dr. Gogoi can speak to that, but I will say from like a screening standpoint, since there’s no great screening test, an ultrasound is not, might be the first step, but it’s definitely not the only step and it cannot be the last.

Dr. Nicole Rochester:

I appreciate that. As you were talking, I was thinking like this needs to be a major awareness campaign, not just for healthcare providers, but for patients as well. 


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Endometrial Cancer Care | Key Barriers and Solutions

Endometrial Cancer Care | Key Barriers and Solutions from Patient Empowerment Network on Vimeo.

What are key endometrial cancer care barriers and solutions? Experts Dr. Charlotte Gamble from MedStar Washington Hospital and Dr. Radhika Gogoi from Karmanos Cancer Institute discuss endometrial cancer incidence, disparities for Black women, symptoms to raise awareness about, and solutions to reduce disparity gaps.

See More from EPEP Endometrial Cancer

Related Resources:

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?

HCP Roundtable Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps

Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps

Transcript:

Dr. Nicole Rochester:

I want to start by just framing the current situation. Black women are twice as likely to die from endometrial cancer when compared to their white women counterparts. There is no current screening test for endometrial cancer, and diagnosis is usually made after patients present with symptoms. Sadly, the list doesn’t end there. So I’m going to start with you, Dr. Gogoi. What are the primary barriers to accessing specialized care for endometrial cancer that you’ve observed in your practice and perhaps in others?

Dr. Radhika Gogoi:

So thank you for that question. I guess I just want to start by just level setting a little bit and talking about specifically endometrial cancer disparities. So unlike other gynecologic cancers, which actually have been shown to be decreasing in incidence, endometrial cancer is actually one of the cancers that is increasing. We know that low grade endometrial cancers really have an excellent prognosis, but higher grade endometrial cancers really have a much poorer prognosis.

And that’s the specific subgroup that seems to be increasing in all women. Black women, again, as you mentioned, have the lowest survival rate, and that is even when corrected for the specific type of endometrial cancer and the stage of endometrial cancer. So with that sort of background and problem, the question really becomes how do we allow and educate our patients about the barriers that they face when accessing specialized care?

And so some of the barriers, at least that I’ve noticed, and certainly in the hospital that I practice in is really as you pointed out, that there is no good current screening test. Black women tend to have a delayed onset from the time of their symptoms, which in this case is really postmenopausal bleeding to actually obtaining a diagnosis.

And there are studies that have shown that some of that is education. They tend or there is an understanding that perhaps postmenopausal bleeding is not as significant an issue, doesn’t lead necessarily, to obtaining healthcare which as you can appreciate then delays the onset of the diagnosis. There is also that Black women present with more advanced disease. This is, again, likely due to the delay in diagnosis and the delay from diagnosis to getting treated.

Dr. Nicole Rochester:

Thank you. Thank you, Dr. Gogoi for level setting and for getting us started with a better understanding of those disparities. And I’d love to go to you, Dr. Gamble. In your experience, what are the primary barriers to addressing specialized care for endometrial cancer?

Dr. Charlotte Gamble:

Yeah, thank you so much. I’ll just add some additional context. I think there are so many places in which these barriers can happen. So as Dr. Gogoi alluded to, sometimes that can happen at the patient level due to just not recognizing that having irregular, unpredictable bleeding, bleeding after menopause, bleeding even before menopause has happened, but really heavy bleeding or heavy periods that any sort of abnormal, heavy irregular bleeding is not normal and has to be evaluated in a timely fashion.

But that’s at the patient level. And sometimes, people have competing priorities where they might recognize that it’s a problem but not be able to make it to their doctor’s office. Have other kinds of things that are happening in their day-to-day lives where they just are not able to prioritize their own health. We also see then how the system can affect that.

If someone hasn’t had a gynecologist in years, or their gynecologist said, bye, you don’t need to see me anymore because you’re over the age of 65, you no longer need pap smears and they’ve fallen out of care, or patients who don’t have health insurance or patients who live really far away from their doctors. Accessing the healthcare system in the year of our Lord 2024 is actually really, really hard. If you lack the resources or lack the wherewithal to navigate that.

Additionally, what we see on the healthcare standpoint is that maybe patients do actually access the healthcare system. They call the gynecologist’s office. They call their primary care doctor, and they’re told by an admin staff or someone else that hears them, but that says, okay, fine, we’ll get you in, but it’s going to be in about three-and-a-half months.

And so sometimes those barriers and those delays come from the health system in general, which is also a challenge. And then even after they present to their doctor, sometimes they’re told, “Okay, let’s go ahead and let’s get an ultrasound first, and based on what your ultrasound looks like, then we’ll decide if we need to do a uterine biopsy to diagnose you.”

But we also know that for certain types of these uterine cancers, specifically the really aggressive ones, that sometimes their ultrasound might look totally fine, but there still can be cancer underlying there. And so I think that there are multiple barriers to getting even. That’s before the diagnosis even happens much less what comes after the diagnosis is had, how one gets from their gynecologist to a surgical subspecialist called the gynecological oncologist that Dr. Gogoi and I, this is our field. And there are multiple barriers and referral pathways there. But that’s to give a little bit more context that these things might start at the patient level, but the healthcare system, unfortunately, can contribute in rarely challenging ways to the barriers that patients face.


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HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care from Patient Empowerment Network on Vimeo.

What are obstacles faced by healthcare providers (HCPs) treating endometrial cancer patients and families? How can HCPs foster a culture of innovation and continuous improvement in clinical practice? Dr. Radhika Gogoi of Karmanos Cancer Institute and Dr. Charlotte Gamble of MedStar Health unravel the complexities of endometrial cancer care, providing HCPs with the insights and tools needed to navigate challenges effectively and to deliver optimal care to their patients and families.

See More from EPEP Endometrial Cancer

Related Resources:

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Overcoming Barriers: Empowering Underrepresented Groups With Endometrial Cancer

Overcoming Barriers: Empowering Underrepresented Groups With Endometrial Cancer

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients or EPEP Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician patient communication and to overcome practice barriers. In this endometrial cancer healthcare provider roundtable, we are discussing breaking barriers and cultivating clinical excellence in endometrial cancer care. 

This program aims to improve healthcare provider awareness of screening and access disparities to specialized care in endometrial cancer, while also addressing solutions to overcome practice barriers such as lack of awareness, outdated practices, and inertia. Today, we’ll talk about some of the complexities of endometrial cancer care and we’ll provide healthcare providers with the insights and tools needed to navigate challenges effectively.

Our discussion will cover enhancing healthcare provider awareness of diagnostic and access disparities to specialized care in endometrial cancer, actionable strategies to overcome practice barriers in endometrial cancer care and empowering providers through fostering a culture of innovation and continuous improvement in clinical practice. 

It is my privilege to be joined by Dr. Radhika Gogoi from Karmanos Cancer Institute. Dr. Gogoi is a dedicated clinician and cancer researcher focused on exploring the Hippo pathway in gynecologic cancers, aiming to uncover novel therapeutic approaches. Thank you so much for joining us today, Dr. Gogoi.

Dr. Radhika Gogoi:

Thank you, Dr. Rochester, and thank you for having me. It’s great to be here.

Dr. Nicole Rochester:

It’s also my honor to be joined by Dr. Charlotte Gamble, gynecologic oncologist at MedStar Washington Hospital Center and MedStar Southern Maryland Hospital. Dr. Gamble is dedicated to taking care of patients who have historically been marginalized and are vulnerable to poor health outcomes. Her research examines the role of safety net hospital systems in gynecologic cancer care. Thank you so much for joining us today, Dr. Gamble.

Dr. Charlotte Gamble:

Thank you so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

So we’re going to start today’s discussion by diving into enhancing healthcare provider awareness of diagnostic and access disparities in endometrial cancer care. And I want to start by just framing the current situation. Black women are twice as likely to die from endometrial cancer when compared to their white women counterparts.

There is no current screening test for endometrial cancer, and diagnosis is usually made after patients present with symptoms. Sadly, the list doesn’t end there. So I’m going to start with you, Dr. Gogoi. What are the primary barriers to accessing specialized care for endometrial cancer that you’ve observed in your practice and perhaps in others?

Dr. Radhika Gogoi:

So thank you for that question. I guess I just want to start by just level setting a little bit and talking about specifically endometrial cancer disparities. So unlike other gynecologic cancers, which actually have been shown to be decreasing in incidence, endometrial cancer is actually one of the cancers that is increasing. We know that low grade endometrial cancers really have an excellent prognosis, but higher grade endometrial cancers really have a much poorer prognosis.

And that’s the specific subgroup that seems to be increasing in all women. Black women, again, as you mentioned, have the lowest survival rate, and that is even when corrected for the specific type of endometrial cancer and the stage of endometrial cancer. So with that sort of background and problem, the question really becomes how do we allow and educate our patients about the barriers that they face when accessing specialized care?

And so some of the barriers, at least that I’ve noticed, and certainly in the hospital that I practice in is really as you pointed out, that there is no good current screening test. Black women tend to have a delayed onset from the time of their symptoms, which in this case is really postmenopausal bleeding to actually obtaining a diagnosis.

And there are studies that have shown that some of that is education or there is an understanding that perhaps postmenopausal bleeding is not as significant an issue, doesn’t lead necessarily, to obtaining healthcare which as you can appreciate then delays the onset of the diagnosis. There is also that Black women present with more advanced disease. This is, again, likely due to the delay in diagnosis and the delay from diagnosis to getting treated.

Dr. Nicole Rochester:

Thank you. Thank you, Dr. Gogoi for level setting and for getting us started with a better understanding of those disparities. And I’d love to go to you, Dr. Gamble. In your experience, what are the primary barriers to addressing specialized care for endometrial cancer?

Dr. Charlotte Gamble:

Yeah, thank you so much.  I’ll just add some additional context. I think there are so many places in which these barriers can happen. So as Dr. Gogoi alluded to, sometimes that can happen at the patient level due to just not recognizing that having irregular, unpredictable bleeding, bleeding after menopause, bleeding even before menopause has happened, but really heavy bleeding or heavy periods that any sort of abnormal, heavy irregular bleeding is not normal and has to be evaluated in a timely fashion. But that’s at the patient level.

And sometimes, people have competing priorities where they might recognize that it’s a problem but not be able to make it to their doctor’s office. Have other kinds of things that are happening in their day-to-day lives where they just are not able to prioritize their own health. We also see then how the system can affect that.

If someone hasn’t had a gynecologist in years, or their gynecologist said, bye, you don’t need to see me anymore because you’re over the age of 65, you no longer need pap smears and they’ve fallen out of care, or patients who don’t have health insurance or patients who live really far away from their doctors. Accessing the healthcare system in the year of our Lord 2024 is actually really, really hard. If you lack the resources or lack the wherewithal to navigate that.

Additionally, what we see on the healthcare standpoint is that maybe patients do actually access the healthcare system. They call the gynecologist’s office. They call their primary care doctor, and they’re told by an admin staff or someone else that hears them, but that says, okay, fine, we’ll get you in, but it’s going to be in about three-and-a-half months.

And so sometimes those barriers and those delays come from the health system in general, which is also a challenge. And then even after they present to their doctor, sometimes they’re told, “Okay, let’s go ahead and let’s get an ultrasound first, and based on what your ultrasound looks like, then we’ll decide if we need to do a uterine biopsy to diagnose you.” But we also know that for certain types of these uterine cancers, specifically the really aggressive ones, that sometimes their ultrasound might look totally fine, but there still can be cancer underlying there.

And so I think that there are multiple barriers to getting even. That’s before the diagnosis even happens much less what comes after the diagnosis is had, how one gets from their gynecologist to a surgical subspecialist called the gynecological oncologist that Dr. Gogoi and I, this is our field. And there are multiple barriers and referral pathways there. But that’s to give a little bit more context that these things might start at the patient level, but the healthcare system, unfortunately, can contribute in rarely challenging ways to the barriers that patients face.

Dr. Nicole Rochester:

Thank you both for that. I think we have a really good idea of the breadth of this issue, and I appreciate both of you pointing out that there are patient level factors, but there are also system level factors that come into play. And, Dr. Gamble, you just kind of ended by talking about referrals.

So I’m going to pick up there. And let’s talk about referral patterns. And I’ll start with you for this question. How do those referral patterns impact access to specialized care gynecologic oncologists like yourself and Dr. Gogoi for women who are diagnosed with endometrial cancer and specifically for those underserved populations?

Dr. Charlotte Gamble:

Yeah, this is a complicated question and multi-layered. Again, I think big picture referral patterns. We know that there are barriers for patients who live rurally. We know there are barriers for patients who don’t have insurance or their insurance might be, they might be underinsured. And so there’s kind of system level barriers that we see on the macro level in some of our referral pathways.

And occasionally, sometimes patients with gynecologic cancers will actually be referred to not gynecologic oncologists, which are surgical subspecialists that work specifically with gynecologic malignancies, but might be referred to a general surgeon first, or a general gynecologist who may or may not know kind of what they’re getting into in terms of the care. I think what I’ve noticed in real life is that when I’m getting referrals, sometimes I’m getting a text message, sometimes I’m getting an email, sometimes getting a message in the medical record system, and the referrals are coming in many different ways.

Occasionally, patients are calling themselves. And so the ways that referrals actually then happen in real life and how those spread to kind of the macro levels is really interesting to me. It can be very complicated, very complex, and I think this is where the role of having healthcare navigators comes into play where folks can really assist patients in getting to the right surgical subspecialists.

Dr. Nicole Rochester:

Absolutely. And we know there’s a lot of evidence for the role of healthcare navigators in other disease spaces and specifically in cancer. So I appreciate you mentioning that. We’ve talked a little bit about patient level factors, and we’ve talked about system level factors. We haven’t talked a lot about maybe some provider level factors.

And I want to talk about cultural competency and the role that that plays in addressing disparities in endometrial cancer, specifically with regard to diagnosis. And I’m going to start with you, Dr. Gogoi on this one. And if you can share the role that you believe cultural competency plays in addressing some of these disparities that we’ve been talking about.

Dr. Radhika Gogoi:

Yeah, so I think you heard from us a little bit that oftentimes some of the symptoms that our patients have had are either ignored, or patients haven’t had a chance to fully address them, or the providers haven’t fully evaluated kind of the importance of their symptoms. And I think, so again, I think nurse navigators community educators are essential in sort of educating our communities about the importance of seeking care when you have sort of the symptoms that Dr. Gamble talked about and in a really timely fashion. I think that that’s really important as well.

So I think it obviously, cultural competency is important in sort of all facets of a patient’s journey as they kind of have the diagnosis through their treatment. But I think that the other place is really once they enter the healthcare system being aware and mindful of sort of healthcare mistrust both from the provider, from the institution, from a much larger governmental level and being aware of that distrust and really trying to take time to address their concerns.

That specifically at least comes up a lot in terms of clinical trials where we know that minority populations, Black patients are met vastly underrepresented. And so I think specifically in that area, there is really the opportunity to do a much better job in providing transparency about the trial design, about recruiting specifically minority patients. Interestingly, a lot of these landmark trials actually didn’t include race as a measure. And so we know that they’re underrepresented, but we actually don’t know how much minority populations are underrepresented. So important to really understand where patients are coming from when they enter a healthcare institution.

Dr. Nicole Rochester: 

Absolutely. Thank you. Thank you so much for that. Dr. Gamble, can you speak to awareness? You spoke about the fact that sometimes patients are referred to perhaps the wrong provider. You know, there was that sent, you mentioned to a general surgeon instead of to a gynecologic oncologist. And so we can imagine that there may be some challenges both in the primary care setting and perhaps even among general obstetrician gynecologists. So can you speak to how we can elevate the level of awareness to enhance healthcare provider awareness of diagnosis and access disparities and really appropriate referral patterns?

Dr. Charlotte Gamble:

Yeah, absolutely. I think it’s a tough question. I think it’s, again, like all things, it’s a little bit nuanced. Sometimes, again different levels of providers, different parts of the country, everybody practices a little bit differently. So everyone knows once you get a cancer diagnosis, you should probably go to a cancer specialist. And so generally, that’s coming to a gynecologic oncologist generally, or that’s sometimes that’s going to a medical oncologist. But occasionally, sometimes patients will have symptoms where it’s just abnormal bleeding, and they’re seeing a general gynecologist who then does a hysterectomy, and there’s a surprise diagnosis of an endometrial cancer.

Usually they’re, hopefully, they’re not making it too much to kind of the general surgery pathway our general surgery colleagues are awesome, but it’s kind of a different kettle of fish and the type of hysterectomy that’s needed and the type of specific surgery that’s needed to include lymph node assessment is different for somebody who’s getting a cancer surgery for uterine cancer compared to, let’s say, for fibroids or for adenomyosis or a non-gynecologic cancer situation.

I think, again, I’m on the receiving end of all of this, so I see patients who have made it to my doorstep and gotten kind of through the hoops and the barriers, but there’s definitely those out there that we know from the data somehow ended up with their surgery, not exactly in the appropriate hands.

And it’s hard to say, I don’t know if I actually even have advice for like how this is supposed to happen. I think we need to understand kind of the as Dr. Gogoi alluded to earlier, just kind of how prevalent endometrial cancer is right now and how the rates are rising and that abnormal bleeding has to be taken very seriously. And the thing that I harp on the most is a normal ultrasound does not mean there’s nothing else to explore there. There has to be a tissue biopsy.

And really impressing that on both patients as well as the first kind of people that they see, either their primary care doctor or even a nurse practitioner, a physician assistant. Just because there’s a normal ultrasound does not mean that your work is done. And we have studies to really demonstrate how that can delay patient’s care and missed diagnoses can happen. So it’s hard to answer your question, to like, how do we fix the referral pathway system? I don’t know the answer to that, and maybe Dr. Gogoi can speak to that, but I will say from like a screening standpoint, since there’s no great screening test, an ultrasound is not, might be the first step, but it’s definitely not the only step and it cannot be the last.

Dr. Nicole Rochester:

I appreciate that. As you were talking, I was thinking like this needs to be a major awareness campaign, not just for healthcare providers, but for patients as well. You know, this idea that abnormal or or postmenopausal bleeding is never normal and make sure your doctor gets a tissue biopsy and not just an ultrasound. Dr. Gogoi, we’ve talked already about some of the obstacles and barriers faced by patients. Can you talk about some of the obstacles or barriers that are faced by healthcare providers when treating endometrial cancer?

Dr. Radhika Gogoi:

Yeah, I think that the one other barrier that sort of comes up a lot specifically in terms of maybe even in terms of getting a patient to their referring providers or a G1 oncologist is transportation. I find that transportation is a huge issue for our patients. And it’s mostly associated with cost. So I think that one of the things that really, that we can do as a community is to somehow provide means or ways for our patients to get to us once they’re diagnosed. It’s hard enough to get them to us but when they’re facing challenges of cost and transportation, that becomes even more challenging.

So I think that that’s from a patient standpoint. And then, and then I think what Dr. Gamble mentioned about really the barriers for providers is really education around ultrasound and how those how specifically perhaps even in Black women, that it’s not as predictive of endometrial cancer risk and that an ultrasound alone is not enough of a workup for a number of these patients to rule out some underlying pathology. So that’s huge, and again mistrust of the medical profession is something that all healthcare providers deal with. And allowing time for patients to ask their questions, to be transparent about what it is that you’re doing and why I think goes a long way towards overcoming those challenges.

Dr. Nicole Rochester:

Thank you both for that. I think we’ve gotten a lot of information around the causes of the disparities and some actions that we can begin taking. Are there any unforeseen or outdated practice-related barriers that may hinder your work and that of your colleagues? And on that same note, are there any solutions or actions related to those? And I’ll start with you on this one, Dr. Gamble.

Dr. Charlotte Gamble:

Well, starting all the way back, I think an outdated practice is not listening to patients, and not recognizing your own privilege as a provider. I think that to Dr. Gogoi’s point that she’s mentioned a couple of times now, I have innumerable patients that just felt that they were not listened to felt that they couldn’t…that their stories were not being heard, that they faced no’s, no’s, no’s at multiple levels in trying to seek care for abnormal bleeding, and come to me very frustrated and kind of weary. And I think just really understanding how vulnerable patients are when they’re seeking care, and being cognizant of the privilege that we have as healthcare providers is something that is more contemporary compared to an outdated practice of being very paternalistic.

I guess sometimes I have had patients who are like, yeah, I was told that I needed a biopsy and I just…the way that they told me and the way that they said that it had to be done tomorrow, it freaked me out, and I couldn’t do it. And it’s just kind of unfortunate when the recommendations might be correct, but the way in which it’s being delivered is not being received by the patients in a way that they’re able to be receptive to.

I think another outdated practice again that I harp on that I’m such a strong believer in is like just the role of the ultrasound. I really, I don’t like it. I hate it. I think it’s useful for knowing uterine size and maybe if there’s some kind of stuff inside the uterus, but abnormal bleeding either before menopause or after menopause has to have a tissued biopsy. So I think that’s outdated to just get an ultrasound and have the patient come back, because it continues to perpetuate delays in care, and I think disparities to an extent. Another outdated…no, I don’t know. Is there anything else, Dr. Gogoi, that you’d add to this?

Dr. Radhika Gogoi:

I feel like this is a lot lot older now. It used to be at one point that we used to do all our endometrial cancer patients with open surgery. I think that now, I guess it’s even more outdated than outdated. Most of the surgeries are now pretty much done either minimally, invasively laparoscopically or robotically. There are obviously extenuating circumstances to both of those things, but I think approach to surgery is also sort of evolved.

The treatment paradigm for patients with advanced endometrial cancers has evolved even more so in the last maybe two years or so with the role of immunotherapy. So encouraging our patients to be educated about their options, both for route of surgery, for treatment and to make sure to ask those questions at the time of their office visit I think is something that we should all encourage.

Dr. Charlotte Gamble:

I would dovetail from that and also say, to kind of harken back to some of the other things we discussed in terms of referral pathways and things like that, and just how gynecologic oncology care is delivered in different parts of the country, there are various models for this, and so classically, patients who have gynecologic cancers, including endometrial cancer are managed solely by the gynecologic oncologist, meaning a surgical subspecialist like myself or Dr. Gogoi, who not only do the surgery, but also deliver if patients need it chemotherapy or specialized systemic therapies afterwards, sometimes with a component in partnership with a radiation oncologist.

But there are parts of the country by institution or by geography where the care that comes after the initial surgery done by the gynecologic oncologist might be shared with a medical oncologist who may or may not actually have super sub-specialized training when it comes to gynecologic cancers, because again, historically, this has been an area that’s been managed really by our subspecialty.

And so I encourage patients as well as referring doctors, et cetera, et cetera, to make sure that whoever, if there’s additional therapies that are needed after the hysterectomy is done, such as chemotherapy or immunotherapy, as Dr. Gogoi alluded to, that that is done in partnership with a gynecologic oncologist, because our field is kind of driving where so much of the contemporary understanding of how to manage these conditions long-term is coming from. And to make sure that if a medical oncologist is doing this, they feel very competent. They do this all the time, and they’re working in close partnership with their gynecologic oncology colleagues.

Dr. Nicole Rochester:

Wonderful. Thank you for that. So as we talk about outdated practices, I guess the other side of the coin is innovation and continuous improvement. And so I’ll turn this question to you, Dr. Gogoi. How can healthcare providers and hospital leaders foster a culture of innovation and continuous improvement? So that’s some of these outdated practices that you all, that you and Dr. Gamble, discussed are really no longer a thing?

Dr. Radhika Gogoi:

Yeah. So I couldn’t agree more.I think that some of those innovative approaches really come from enrolling in clinical trials. And so I think that the importance of having minority populations, equally represented in clinical trials is essential. Otherwise we’re not going to make the progress that we need to make to really equal the playing field here, so to speak. So I think that that really is a huge player trying to educate patients about clinical trial options, being transparent about what those look like, who benefits, what the data suggests, why it’s important to me is again, really key.

Dr. Nicole Rochester:

Wonderful. And Dr. Gamble, if we were to be specific, are there any healthcare provider to healthcare provider strategies, anything that you’ve seen work, maybe things that you’ve done yourself, innovative approaches or protocols with regard to this idea of innovation and continuous improvement?

Dr. Charlotte Gamble:

Yeah, I think different institutions have different cultures, and I think having institutional culture that embraces change that is, desires to be on the vanguard of advancing science, and the science could be in terms of bench research. It could be in terms of clinical trials, it could be in terms of healthcare delivery, really trying to advance and push forward. The science and how we get the best care to our patients in the most timely fashion I think is really important. Culture is hard to change, and we all work in institutions that have various different cultures. I think that healthcare provider to healthcare provider, I think open lines of communication are great. I tell folks, text, call, email, whatever you need to do to get patients in a timely fashion is necessary.

I think the understanding of we are one person working within a team is really necessary. So patients might say, oh, Dr. Gamble this, Dr. Gamble that, but I always, always, always tell them that I cannot do this work without my nurse navigator, without my fellow, without my residents, without my inpatient floor nurses, the oncology nurses, and really understanding that oncology care specifically is a really big team sport.

And healthcare leaders, when we’re thinking about things from a system level, I think sometimes have different like just help making sure that everybody understands how much of a team sport that this is. How much the radiation oncologists, the medical oncologists interface with us on a regular basis, I think is really important. And to understand that we’re all in this together to deliver the best care to our patients. I really think the role of health, like nurse navigators and lay navigators needs to be further pushed forward within our field, including not only gynecologic oncology, but just gynecology in general, and that’s some of the work that I’m doing from a research standpoint now. And so I’d love to see the role of navigators be fully embraced and somehow reimbursed by healthcare systems in general.

Dr. Nicole Rochester:

Absolutely. Well, it is time to wrap up this roundtable. I have really enjoyed talking with both of you as always. I have learned a lot. I’m sure that our audience will learn a lot from this conversation. And before we go, I’d love to get closing thoughts. So I’m going to start with you, Dr. Gogoi. What is one takeaway message that you would like to leave with the healthcare professionals who will watch this program?

Dr. Radhika Gogoi:

So I guess the one takeaway would be that, as I think about my role in sort of disparities prevention, if you say it is really as an educator, and so the importance of community education on symptoms, on diagnosis, on treatment approaches, I think it’s essential that we don’t think of ourselves as a silo. I’m not just, but I’m part of the larger community as Dr. Gamble spoke about. And to be part of that larger community means that I need to be within that community and function within the community. So whether it’s me, community navigators, health educators to really play a role in educating our patients about how to approach their symptoms.

Dr. Nicole Rochester: 

Wonderful. Thank you, Dr. Gogoi. And what about you, Dr. Gamble, what’s your closing thought that you would like to leave with the audience?

Dr. Charlotte Gamble: 

Yeah, I think for healthcare providers in general, I think the thing that I think is most important is, again, being able to listen to patients, working and encouraging the systems that we are housed into, be able to be responsive to them, so that if patients are educated, do know that there’s something wrong. They’re able to not only get a hold of someone, but also be listened to and heard and taken seriously. And we have a lot to do in that regard. So I think just understanding again, our role and how privileged we are to be in our jobs, in this line of work, and being able to leverage that to listen to patients and get them the timely care that they need.

Dr. Nicole Rochester:

Wonderful. Well, thank you both again, Dr. Gogoi, Dr. Gamble, thank you for this enlightening conversation. We’ve learned so much about endometrial cancer. I think for me, the main takeaway is postmenopausal bleeding, abnormal irregular bleeding is never normal. It needs to be evaluated. You both spoke about the importance of biopsy and not just an ultrasound, and in fact that ultrasound can be normal.

And with regard to disparities, I really appreciate both of your thoughts around community education, and this being a team sport and listening to our patients. So again, thank you so much for being here today, and thank you all for watching the program and tuning into this Empowering Providers to Empower Patients, Patient Empowerment Network program. I’m Dr. Nicole Rochester. Thanks again for watching.


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Empowered Care: A Patient’s Guide to Navigating Endometrial Cancer

Empowered Care: A Patient’s Guide to Navigating Endometrial Cancer from Patient Empowerment Network on Vimeo.

Meet Sharon, a 61-year-old endometrial cancer survivor who knows firsthand the importance of being an active participant in her healthcare. After a two-year struggle with misdiagnosed symptoms and a dismissive doctor, she took charge and found the right medical support, leading to a diagnosis of endometrial cancer.

Sharon’s journey, from diagnosis to treatment and recovery, highlights the vital role of self-advocacy and patient activation. Her story is a beacon for others, especially women of color facing similar challenges, emphasizing the power of being informed, asking questions, and seeking support.

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Related Resources:

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Being activated is a critical part of endometrial cancer care, especially for patients like me. 

My name is Sharon, I’m 61, and my diagnosis came after a two-year struggle with unidentified symptoms. Sharing my experience is my way of reaching out, hoping it might provide guidance to others facing similar challenges.

My symptoms began with abnormal vaginal bleeding, but my periods had ended over 10 years ago. That had me worried, and my sister encouraged me to see a doctor after I told her about the bleeding. I scheduled an appointment, but my doctor dismissed my symptoms. I felt like he wasn’t really listening to me and decided to find a doctor who looks more like me and would be more likely to listen to me. I found a Black female doctor who was concerned about my symptoms, which had worsened by then. I was also feeling pelvic pain. My new doctor scheduled an endometrial biopsy, and I was diagnosed with papillary serous carcinoma shortly afterward.

With an aggressive type of cancer, my oncologist scheduled a laparoscopic hysterectomy to remove my uterus along with my ovaries, fallopian tubes, and sentinel lymph nodes. I had the surgery within a few days, which was quickly followed by radiation to help ensure any remaining cancer cells were wiped out. My recovery went smoothly, and I continue to live a full life while getting regular scans to ensure I remain cancer-free.

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. Remember that you shouldn’t have to suffer with your pain, and you can advocate for yourself and ask about patient advocates to advocate on your behalf.

Here are my activation tips for patients facing an endometrial cancer diagnosis:

  1. Ask your care team questions to learn about the status of your endometrial cancer, treatment options, and what to expect during and after treatment.
  2. Join a patient support group to offer and receive emotional support.
  3. Last but not least, inquire if a clinical trial may be a potential treatment option for your endometrial cancer.

Remember, stay activated by being informed, empowered, and engaged in your cancer care.


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[ACT]IVATED: Empowering Endometrial Cancer Awareness & Action

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.

[ACT]IVATED Endometrial Cancer Patient Plan

Thank you for taking this assessment. By answering the questions below, a custom patient plan featuring a collection of vetted resources will be emailed to you within 5 minutes. If you don’t see it, please be sure to check your spam. Stay [ACT]IVATED. 

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Navigating Advanced Endometrial Cancer: Treatment, Prognosis, and Lifestyle Strategies

Navigating Advanced Endometrial Cancer: Treatment, Prognosis, and Lifestyle Strategies from Patient Empowerment Network on Vimeo.

How does the treatment of advanced endometrial cancer prognosis differ from other gynecological cancers? Expert Dr. Charlotte Gamble from MedStar Health shares common challenges that she’s seen with her patients and patient advice to help optimize their care. 

[ACT]IVATION TIP

“…I always encourage patients, and when I meet with them for the first time, I ask them, who is your main support person? And if they’re not here right now, let’s actually get them on the phone. They need to be involved from the start to understand this hurdle that you’re going to be going through over the next several months.”

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See More from [ACT]IVATED Endometrial Cancer

Related Resources:

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Lisa Hatfield:

Dr. Gamble, how does advanced endometrial cancer differ from other gynecological cancers in terms of treatment of prognosis, and what lifestyle changes can help improve outcomes for patients with advanced endometrial cancer?

This is such a heavy question, so necessary. I think that, classically what we’re taught is that endometrial cancer is very curable, very treatable.  

All you need is a hysterectomy and surgery, and then you’ll be done. But what we see, and specifically in my work, and I take care of mostly Black or African American patients, is that, there are certain types of cancers specifically that are a little bit more prevalent in the, African American community within endometrial cancers that are more aggressive, that need not only surgery, but need chemotherapy and might, because they’re more aggressive, patients come and are already at like stage III or sometimes stage IV, when they’re actually being diagnosed, not due to any sort of delay and recognizing their symptoms or delay in diagnosis, but literally when their symptoms occurred, they were already stage IV. And this is a really, really, really challenging space to be in.

And historically also very challenging because again, as I mentioned, endometrial cancer is one of the least, if not the least funded cancers of the National Cancer Institute in terms of clinical trials. And so there have not been, historically a lot of options for patients who have advanced stage endometrial cancer,  aside from our classic chemotherapy drugs with carboplatin (Paraplatin) and paclitaxel (Abraxane) take six cycles. You see how things go and maybe these patients get radiation. And so it’s been a very challenging space to be in over the past couple of years. 

As I mentioned, these new immunotherapy drugs are really, giving us a lot of hope and very exciting space, now to see how these novel immunotherapy drugs help to maybe change some of those prognostic factors for patients. But it’s a tougher diagnosis. The survival is not as good as someone who has early stage non-aggressive endometrial cancer.

And so, not only do patients get their surgery, but they’re also getting the chemotherapy. And now, oftentimes getting immunotherapy onto this, and immunotherapy continues after the chemotherapy for oftentimes up to three years. And so patients are on treatment for a lot longer. I think that, you know, in terms of lifestyle changes, again, there’s not a lot of research in this area.

Traditionally, we think of, endometrial cancer as a cancer that is, that can occur more frequently in patients who are overweight, or have elevated BMIs. And so, their cardiovascular health is actually very important. And so lifestyle changes to address their cardiovascular health is going to be much more beneficial than anything else, that occurs. But what I unfortunately see in my practice is that you, might, your heart might be just fine, but if you’ve got cancer that’s in your lungs or in your upper abdomen or in your bones, when you’re diagnosed, that kind of takes over everything, and it’s very difficult to treat.

 I think what is important when I personally think about lifestyle factors and, advanced stage of endometrial cancer, is trying to maintain a healthy enough lifestyle and adequate strength to get through the necessary treatments, that are really tough with chemotherapy and immunotherapy. And so the healthier a patient is when they’re diagnosed, the stronger they are through their treatments, the better able that they’re able to maintain their nutrition and as, moderate amount of exercise during their treatments, the better they are able to get through their treatments in a timely fashion.

And a lot of this can be also tied to the amount of support that patients have in their lives. If someone is isolated and has very little, family or friends that are able to be there for them, it’s a much harder mental barrier to get through all of this aggressive treatment than someone who might, have patient or patient advocates with them or friends or family members that are always around.

So I always encourage patients, and when I meet with them for the first time, I ask them, who is your main support person? And if they’re not here right now, let’s actually get them on the phone. They need to be involved from the start to understand this hurdle that you’re going to be going through over the next several months.

So I always tell folks that, you know, I’ll take care of all the medical stuff, I’ll do the surgery, and I’ll run the chemotherapy, and me and my nurse navigator will be able to handle all the medical things. And so you don’t need to worry about that. But the psychological burden this takes, the mental and emotional burden this takes is going to be something that is really going to be much more in the patient’s control and much more in your control as you get through this.

And so finding your support structures and making them, making sure they’re involved from the very start is very, very critical. One of the trials that we have open here, at my health system is looking at the role for increasing social support for patients who are Black, who have advanced stage endometrial cancer and seeing what forms of social support, if that’s group therapy or if that’s one-to-one, peer survivor support or just additional information, if that actually can, which one of those might be the best and help patients get through their therapies. And that’s a trial that’s run by Dr. Doll out of University of Washington.

Advanced endometrial cancer is a tough diagnosis to have, and the survival outcomes, although changing rapidly with the introduction of immunotherapy drugs, are, still a challenge. The lifestyle changes, it really comes to, you know, what patients can do to get through their treatment in a timely fashion. But I think the role of social support and having people that can carry patients through and get them through this tough time is central to this question.


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Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions from Patient Empowerment Network on Vimeo.

What are key challenges and solutions to gynecologic oncology research disparities? Expert Dr. Charlotte Gamble from MedStar Health shares specific factors that show up in research disparities and proactive advice to healthcare providers and researchers to help close the disparity gaps.

[ACT]IVATION TIP

“…for healthcare providers and researchers, is that we have to think about action and what, the evidence-based strategies are to help directly affect the disparate outcomes we see in America for our patients with cancers and to center patients and their concerns within these research questions.”

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See More from [ACT]IVATED Endometrial Cancer

Related Resources:

Navigating Advanced Endometrial Cancer | Treatment, Prognosis, and Lifestyle Strategies

Navigating Advanced Endometrial Cancer | Treatment, Prognosis, and Lifestyle Strategies

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Lisa Hatfield:

Dr. Gamble, what are the key challenges regarding the current paradigm of disparities research and gynecologic oncology, and what steps are proposed to overcome these challenges? And what is the role of the patient? 

Dr. Charlotte Gamble:

I love this question. This is such a great question because this is like my happy space and where I live, when I’m not taking care of patients directly and kind of where my research interests lie. So to take each question, each question, each part of this question, what are the key challenges regarding the current paradigm of what’s called disparities research? So I think a couple of challenges. One, historically disparities research just meant like looking and seeing what these patient outcomes were and who lived longer and, oh, no, it looks like Black patients are not living as long as white patients, and it looks like poor patients aren’t living as long as rich patients.

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.

You look at these large cancer databases, you look at the SEER database, the National Cancer database as well, and can get, pull all these statistics and come up with pretty graphs that just show really wide disparities in Black versus white and versus Hispanic versus non-Hispanic and just say, hey, there are differences and people who are historically marginalized or vulnerable just don’t do as well, which is, okay, fine and good and maybe necessary to have that data to know where we’re starting from. But a challenging in that is that just shows some associations. There is not necessarily causation. There is no attempt to fix the system. It’s merely just stating these are where, this is where we’re at. And at this point, frankly, in 2024 and honestly for the past 15 to 20 years, it’s not anything new. It’s nothing that’s surprising.

 Like these have been trends that have been pretty ingrained in this social system and healthcare system that we have in the United States. And so doing kind of disparities that just discusses these differences is a little bit outdated at this point. I think, to answer the second part of that question, what are steps proposed to overcome these challenges? Really moving into, okay, so these differences are there, what are we going to do? So what are these solutions? What are the evidence-based solutions to these differences in how we overcome? So that spans anything from looking at sometimes the molecular tumor makeup that might be different based on ancestry or maybe based on exposure to racism. How does exposure to racism and or stress and over a lifetime influence cancer biology?

If someone has been minoritized and has been exposed to stress because of this for their entire lives, does that change their cancer risk or change the type of cancer they have or change how when they are diagnosed with cancer, how they respond to treatment. None of this has really been very aggressively studied within the gynecologic cancer space.  Some of this within the breast cancer space has been looked at, but not very much with the gynecologic cancers.

But then also importantly in this space that I love to live in is, okay, so like, how are we going to overcome the barriers that we discussed earlier? How do we get patients into the healthcare system a little bit earlier when they have abnormal symptoms? How do we get them to a subspecialist if they have transportation barriers, insurance barriers, health system barriers, and how do we actually address what we already know is the problem if they face delays in care, how do we shorten those intervals so they get timely care? And those are harder questions.

It’s harder to publish, it’s harder to get these studies done. They’re really messy. And I think that, there’s a lot of need to actually look at how the system is working or not working for patients and actually doing evidence-based strategies that we know, ie for example, care navigation to help improve the timeliness of care that patients receive.

To answer, and this dovetails well into the third part of the question, which is what is the role of the patient? This is critical because as we start thinking about actually designing interventions to work or to address these barriers, to care, to influence disparities and outcomes, of, patients with these cancers, patients are the center of what we do, and they have to be the center of the research, and they cannot be consulted on the back end after someone has come up with a very pretty project that sounds really nice and like can get funded easily.

 They have to be at the center at the start of the project. And so I think it’s really important to center voices of patients in designing research protocols, center them in designing clinical trials, center them in designing community-based outreach programs. This has to, not only come from patients, but feel like it is a patient almost run program. And, I think Kemi Doll really in the gynecologic cancer space, has, been a fierce advocate for, including patients and centering patients and, having patients lead as opposed to follow, as opposed to being adjacent to the project, but being really central to it and to its functioning.

And so when we think about the interventions, when we think about the research questions that are yet unanswered, oftentimes these answers as well as the, logistics of how to get these programs done lies within patients, their communities, their loved ones themselves, and failure to involve them early in the process is a failure of the research project in general. I think my activation to this question is actually for healthcare providers and researchers, is that we have to think about action and what, the evidence-based strategies are to help directly affect the disparate outcomes we see in America for our patients with cancers and to center patients and their concerns within these research questions.


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How Can Gynecologic Oncology Racial Disparities Be Addressed?

How Can Gynecologic Oncology Racial Disparities Be Addressed? from Patient Empowerment Network on Vimeo.

What are some ways that gynecologic oncology racial disparities might be addressed? Expert Dr. Charlotte Gamble from MedStar Health discusses racial inequities in care on different levels and how to start reducing disparities.

[ACT]IVATION TIP

“…understanding how race, racism intertwine with cancer outcomes and access to care, the role that underrepresentation of Black patients on clinical trials has had on the novel therapeutic developments and where these survival gaps worsen when these new drugs are improved or introduced into the system. Because Black patients might not benefit significantly from them, because they have not been represented in the clinical trials as well as they might not have access to these drugs initially when they’re initially rolled out.”

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See More from [ACT]IVATED Endometrial Cancer

Related Resources:

Navigating Advanced Endometrial Cancer | Treatment, Prognosis, and Lifestyle Strategies

Navigating Advanced Endometrial Cancer | Treatment, Prognosis, and Lifestyle Strategies

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Transcript:

Lisa Hatfield:

Dr. Gamble, could you elaborate on the racial inequities in cancer outcomes highlighted in your research, particularly with gynecologic oncology? The article or blog mentions the public health critical race practice, so the framework for understanding racial disparity in healthcare. So how can this framework be applied practically in addressing disparities within gynecologic oncology?

Dr. Charlotte Gamble:

Absolutely. I think within gynecologic oncology, again, addressing people who have cancers of the female reproductive tract, ovary, uterine endometrial, specifically within the uterine cancer space, cervical cancer and vulvar cancers. We have multiple levels of racial inequities. When we talk about what cancer outcomes are, these are things like recurrence rates. How quickly does the cancer come back after it’s been treated for the first time? Survival outcomes. So what proportion of patients who have this cancer are living at 5 years? Surgical complications, at 30 days, how many patients had a stroke? How many patients had to be readmitted? How many patients had a blood clot? And so there are definitely different levels of cancer outcomes within the cancer care in general. And what we see within gynecologic cancers is a couple of different things.

So historically within ovarian cancer, there was a thought that there was not too much in terms of survival. Survival outcomes is kind of by far the most commonly cited cancer outcome that is used as a benchmark in all cancer fields. And looking at five-year survival, basically, how what proportion of patients are alive with their cancer at five years. And historically ovarian cancer is, but thought to not have too much of a difference.

When we talk about basically Black, white racial disparities in the United States, although that has been kind of poked at over the past couple years, and there might actually be pretty significant differences when it comes to ovarian cancers and the regionality in part of the country and how long patients live with in general, because ovarian cancer is oftentimes diagnosed at such an advanced stage. Patients do overall, can overall have such significant issues with getting to that five-year overall survival, regardless of race, that again, everything that is influenced by race or the exposure to racism in this country might be washed out just basically because it’s really, really tough when someone has an advanced ovarian cancer diagnosis.

We do know that oftentimes patients who are Black or have been exposed to racism are less often likely to get surgeries, are sometimes more or less likely to get standard of care chemotherapy. And within the ovarian cancer space, over the past 10 years, we really now frequently use genetic testing and the availability of a drug called PARP inhibitor, a targeted oral chemotherapy drug that is used after someone has completed their initial rounds of chemotherapy to help improve their survival. That had really wonderful results about 10 years ago based on several international trials. The challenge though, is when we have novel therapeutics or novel drugs that we give to patients based on really amazing clinical trials, the patients who are most likely to get it are patients who have higher access to care, who might be a little bit more affluent.

And oftentimes this is disproportionately white patients in the United States. And so some of these racial disparities widen for a bit after novel therapeutics are introduced into the system. When it comes to cervical cancer, what we’ve seen historically, is that this is a cancer that is entirely preventable and entirely through a combination of a lot of screening with Pap smears as well as the HPV vaccine. And historically, again, it tends to be disenfranchised, historically marginalized or minoritized patients that might not complete their HPV vaccination series or be able to get the regular Pap smears because their lives end up being pulled in several different directions. And so they end up getting diagnosed with a cervical cancer that is entirely preventable in 2024, as we just saw this young influencer die of an advanced stage cervical cancer. Things like that really shouldn’t happen.

And again, this, the underlying driver of this, we mentioned the critical race practice, is that race or racism is an underlying driver for everything that happens in the United States based on historical issues in this country. And the patients who are disproportionately affected by this tend to be Black minoritized patients. And so that manifests itself in terms of access to Pap smears, access to HPV vaccination screening. In terms of the endometrial cancer space, I love the example that Dr. Kemi Doll uses that really thinking about endometrial cancer is thinking about reproductive health for women and the continuum of thinking about not only the maternal mortality issues that we see for women of reproductive age.

And this extends into postmenopausal women who are disproportionately affected by high risk, aggressive types, advanced stages of endometrial cancer. And so having endometrial cancer as a continuum of reproductive healthcare and involving that in the maternal mortality conversation is a really, I think, helpful way to frame that, that she’s propagated over the past several years.

And so, when we think about endometrial cancers, one of the things that I mentioned earlier is we have these lovely clinical trials that have shown really amazing improvements in overall survival. The kind of nuance to that though is one, these trials weren’t entirely fully representative of the diverse patient population we care for in the United States. There were not enough Black patients in those trials by any means.

Two, the, those new novel immunotherapy drugs work incredibly well in a subset of patients with endometrial cancer, who have what’s called mismatch repair deficient cancers. It’s just a kind of a specific subset of the molecular profile of these endometrial cancers. And these drugs are almost a golden ticket for these patients and really extend survival. And it’s amazing. What is very concerning is that for Black women, the rates of this mismatch repair cancer is not as prevalent.

And so Black women oftentimes have less frequent mutations that will work with these therapeutic drugs. And what I’m very concerned about might happen is that as these drugs are now the golden ticket for a lot of these advanced stage endometrial cancers that specifically have this mutational difference mismatch repair deficiency, Black women might be left behind because the rate of having a mismatched repair deficiency is less for them, and these drugs might not work as well.

And I’m very concerned that we might see a widening in the racial disparities in these cancer outcomes, specifically survivorship for endometrial cancer. As these immunotherapy drugs are increasingly used in clinical practice, even though we use them for all patients, it’s, they work best in a subtype of patients that are oftentimes disproportionately not Black. And I very much worry that we’re going to start seeing a widening in the survival gap as they did for melanoma, when there were novel drugs that address a melanoma treatment pathways that disproportionately did not work well in Black patients.

In terms of activation tip for this question, oh, I think it’s important to take this question in the historical context of this country and understanding how race, racism intertwine with cancer outcomes and access to care, the role that underrepresentation of Black patients on clinical trials has had on the novel therapeutic developments and where these survival gaps worsen when these new drugs are improved or introduced into the system. Because Black patients might not benefit significantly from them, because they have not been represented in the clinical trials as well as they might not have access to these drugs initially when they’re initially rolled out.


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How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Is Gynecological Cancer Care Impacted by Social Determinants of Health? from Patient Empowerment Network on Vimeo.

How can social determinants of health impact gynecological cancer care? Expert Dr. Charlotte Gamble from MedStar Health explains common factors that can present barriers to care and some resulting impacts to patient care.

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See More from [ACT]IVATED Endometrial Cancer

Related Resources:

Navigating Advanced Endometrial Cancer | Treatment, Prognosis, and Lifestyle Strategies

Navigating Advanced Endometrial Cancer | Treatment, Prognosis, and Lifestyle Strategies

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Transcript:

Lisa Hatfield:

Dr. Gamble, how do social determinants of health potentially influence the quality of care received by patients with gynecologic cancers?

Dr. Charlotte Gamble:

Yeah, another really wonderful question and an area of research that people have looked at for a long time. I think when we think about social determinants of health, we have to define what they are, right? So these are going to be aspects of people’s lives that might not be specifically health related, but absolutely influence the ability to access healthcare, the ability to complete treatment regimens, the ability to be able to get support and survive these treatment regimens and continue in survivorship.

So think when we, when I specifically think about social determinants of health and gynecologic cancers and encompassing the ovarian cancers, cervical cancers, endometrial cancers and vulvar cancers. We see multiple things. So in general, these cancers are affecting people who have the female reproductive tract. So this is going to be oftentimes people that identify as women, but also can include trans men.

And so there’s also like a gender component of this and how people identify. And for the trans community, there are barriers everywhere in terms of how they can access gynecologic care and the stigma that might be associated with providing trans healthcare in general that affect them specifically. When we talk about women or people who have identified as women and who also have a female reproductive tract, there comes into place how women in general and historically have been able to access healthcare and the barriers that they might face in communities.

Women generally tend to be the providers of healthcare or the providers of childcare and have several responsibilities in taking care of their families and communities. And in so far, doing tend to downplay their own healthcare and prioritizing their own well-being to be able to care for those who they love, who surround them and are stretched thin.

And so because of that, we oftentimes see delays in seeking access to healthcare because women tend to be pulled in so many different directions by their communities. Other times what we see is things that I’ve mentioned previously in terms of insurance barriers and either not having insurance. So for patients who are undocumented immigrants, this tends to be a massive issue. I’ve had patients myself that we’ve had to work tirelessly for, to be able to get them insurance. And this is in the nation’s capital where insurance, even for undocumented people, tends to be a little bit easier to access than in other places. And it’s been a huge challenge and delay their care by months. And this directly correlates with survival and how patients do on the back end of things. But even having insurance that is, that is, doesn’t, might not cover everything that’s needed, and there might be large copays associated with visits or treatment plans.

This is an area that there’s a lot of room to improve in the United States, and a real macro issue. But when it comes to also things like transportation and living in a food desert and not having healthy groceries and nutritional options that for patients who have endometrial cancer, that oftentimes if it’s a low grade non-aggressive cancer, they’re going to do fine from a cancer standpoint, but it’s the cardiovascular issues and the possible severe obesity they might suffer from. And that is an issue that patients who live in food deserts or live in places that they can’t access sidewalks and ability to live healthy lives in their neighborhood will really suffer from not being able to have those determinants of health work in their favor.

And then we also have issues within health systems. And we see that for patients who live in conditions that are historically considered impoverished, they might not be able to make it to the beautiful National Cancer Institute designated cancer center, seeing this most subspecialist and having access to five clinical trials and a case navigator and a care navigator and a social worker to help them through the social issues that they might be seeking care with a community practice that could itself be underfunded or not linked to strong cancer institute options.

And so that’s another kind of systems level that we see where patients are seeking care that they might not be able to actually get to the subspecialists that they need, or health systems that are resourced enough to help them in their lives. So that’s a very long-winded question, [laughter] because it’s such a massive issue. But it, social determinants of health affect everything in the cancer continuum from a timely diagnosis and being able to recognize abnormal symptoms to being able to get into a doctor’s office, to be able to get to a subspecialist that is has expertise in the area to be able to complete therapies on time and to be able to eat healthy food and have a healthy lifestyle after one has gone through all these major treatments. It’s a massive issue and something that we see in every single health condition in the United States.

That is the most excellent comprehensive response to barriers, obstacles, stigmas that I’ve ever heard regarding accessing quality of care for cancer patients. Any cancer patient is going to benefit from your response to that. So thank you. 


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Are Beauty Products a Risk Factor for Endometrial Cancer?

Are Beauty Products a Risk Factor for Endometrial Cancer? from Patient Empowerment Network on Vimeo.

Do some beauty products pose a risk factor for endometrial cancer? Expert Dr. Charlotte Gamble from MedStar Health discusses studies that investigated endometrial cancer risk and beauty products that may be a risk factor.

[ACT]IVATION TIP

“If patients have a concern about hair straightener products in general, then maybe it’s time to start avoiding them. But if it’s something that is really important to you and is a crux of who you are as a human being, then I’m not sure we have enough data to say you should absolutely avoid this, and this is contributing to your cancer risk.”

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See More from [ACT]IVATED Endometrial Cancer

Related Resources:

What Are Barriers to Endometrial Cancer Care Access?

What Are Barriers to Endometrial Cancer Care Access?

Advancements in Endometrial Cancer Trials: Insights and Opportunities

Advancements in Endometrial Cancer Trials | Insights and Opportunities

Should Some Gynecologic Cancer Patients Seek a Specialist?

Should Some Gynecologic Cancer Patients Seek a Specialist?

Transcript:

Lisa Hatfield:

Dr. Gamble, there are often questions around the use of hair products and gynecological cancers. Can you speak to this and whether there are any correlations or risk factors with the use of these hair products?

Dr. Charlotte Gamble:

Absolutely. This is also an area of some controversy, and the data has yet to really be accepted or validated. And it’s, I think, an area that needs so much additional research. So, you know, 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.

The overall conclusion from these studies was that the frequent use of hair straightener products might increase the risk or is associated, I should say, with a risk of developing uterine or endometrial cancer. But the nuances within how these studies were conducted and which populations they were done in, I think deserves a little bit of detail and insight.

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 kind of challenges I have with this is not only the patient population looking at it being predominantly groups of folks who already have a relative with a cancer, but then also the cohort itself is predominantly Caucasian or white, with 85 percent being white and a very small percentage of those patients being Black. And it’s hard to actually draw conclusions based on that, again, with just not a great representation of Black women who can be frequent users of hair straightener products.

And then there are nuances of like, what is a hair straightener product? What does that mean? Is that a chemical relaxer? Is that a Brazilian? And how does that actually affect the endometrial cancer risk? And we don’t know. Again, it’s a correlation, an association, but not a causation. The other study was done in a cohort of patients who were Black in the Black Women’s Health Study. And so it was a much better representation of patients that I take care of and are at risk of endometrial cancer. And the challenge with this study was that there are several different nuances and kind of when the cancer occurred and if it was pre-menopausal, before menopause or after menopause and the type of cancers they were.  And I think a lot of this data is pretty compelling that there’s probably some degree of an association.

But it’s very difficult to know how that actually relates to the type of cancers that we see most frequently in Black women, which are aggressive, non-hormonally responsive cancers that might not have any sort of risk that’s tied to hair straightener products that generally do a hormonal cascade. So my activation tip for this question is we do not know. The jury is out. There are some initial studies that look at this association and for patients and how they take care of their hair. If patients have a concern about hair straightener products in general, then maybe it’s time to start avoiding them. But if it’s something that is really important to you and is a crux of who you are as a human being, then I’m not sure we have enough data to say you should absolutely avoid this, and this is contributing to your cancer risk.


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Should Some Gynecologic Cancer Patients Seek a Specialist?

Should Some Gynecologic Cancer Patients Seek a Specialist? from Patient Empowerment Network on Vimeo.

Why might some gynecologic cancer patients want to see a specialist? Expert Dr. Charlotte Gamble from MedStar Health explains the reasoning of seeing a specialist and why a specialist may not be seen in some areas.

Download Guide | Descargar Guía en Español

See More from [ACT]IVATED Endometrial Cancer

Related Resources:

What Are Barriers to Endometrial Cancer Care Access?

What Are Barriers to Endometrial Cancer Care Access?

Advancements in Endometrial Cancer Trials: Insights and Opportunities

Advancements in Endometrial Cancer Trials | Insights and Opportunities

Are Beauty Products a Risk Factor for Endometrial Cancer?

Are Beauty Products a Risk Factor for Endometrial Cancer?

Transcript:

Lisa Hatfield:

A lot of people in our audience are going to community facilities for their care. Do you recommend for patients who are diagnosed with any type of gynecologic cancer to seek out a specialist or a subspecialist to get more information or do you feel confident that they can ask these questions if they’re a local oncologist, if they do not specialize, if they’re more of a general oncologist versus a specialist?

Dr. Charlotte Gamble:

This is such a nuanced question and is probably a little bit controversial within the oncology sphere. So endometrial cancer is a gynecologic cancer. And because of that, historically, the providers that have the most specific expertise in that area have traditionally been gynecologic oncologists. These are both surgeons as well as oncologists that do the surgery as well as the chemotherapy or the targeted therapy. We are now in a space where sometimes that care is a little bit fractioned, and there’s different ways of practicing within this realm of gynecologic oncology throughout the country.

And so some health systems have gynecologic oncologists, more of the surgeons that work very closely in partnership with medical oncologists that might treat specifically gynecologic cancers, or sometimes are more general medical oncologists that treat multiple different kinds of cancers. I would say that, and then there are some places where gynecologic oncologists do it all.

So I actually work in a hybrid system where I, in one hospital that I work at, I’m the gynecologic oncologist and do both the surgeries as well as the chemotherapy. And then at a community site that I work with, I do the surgeries and I work closely with general medical oncologists who are able to provide the chemotherapy or the targeted therapies.

I would say that for patients who are receiving care within a general medical oncology practice, a very good question to ask their medical oncologist would be, are you in contact or how closely do you work with gynecologic oncologists in terms of taking care of patients with gynecologic cancers? Because traditionally, medical oncologists might not receive the depth of education in gynecologic cancers that gynecological oncologists actually need to go through and that patients deserve.  And I have worked with several medical oncologists who are absolutely wonderful, but it is a close partnership that we are making these plans together and they understand the gynecological oncology literature and I’m able to guide those therapies for my patients. 

Lisa Hatfield:

That’s great clarification for patients who might be facing this disease and a great question they can pose to their local oncologist. So thank you for that.


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Advancements in Endometrial Cancer Trials | Insights and Opportunities

Advancements in Endometrial Cancer Trials: Insights and Opportunities from Patient Empowerment Network on Vimeo.

What’s important for endometrial cancer patients to know about clinical trials? Expert Dr. Charlotte Gamble from MedStar Health discusses novel therapies under study, treatments that are showing promising results, and patient advice on clinical trials.

[ACT]IVATION TIP

“…be able to ask your doctor about if you’re eligible for clinical trials, what your cancer mutational or genetic code is that might make you eligible for certain clinical trials, and where those trials are offered, if it’s at the health system that you are seeking care, or if it’s at a nearby health system, if you’re able and willing to travel.”

Download Guide | Descargar Guía en Español

See More from [ACT]IVATED Endometrial Cancer

Related Resources:

What Are Barriers to Endometrial Cancer Care Access?

What Are Barriers to Endometrial Cancer Care Access?

Should Some Gynecologic Cancer Patients Seek a Specialist?

Should Some Gynecologic Cancer Patients Seek a Specialist?

Are Beauty Products a Risk Factor for Endometrial Cancer?

Are Beauty Products a Risk Factor for Endometrial Cancer?

Transcript:

Lisa Hatfield:

So, Dr. Gamble, this is kind of a three-part question about clinical trials. Can you talk a little bit about ongoing clinical trials that are investigating novel therapies for advanced endometrial cancer? And then maybe talk a little bit about some promising or encouraging results that you’re seeing with trials? And last part of the question is, what do you want people living with endometrial cancer to know about clinical trials?  

Dr. Charlotte Gamble

I’m so glad you asked this question. This is such a valuable question and an area of a lot of interest that has improved over the past several years, not only about clinical trials and the real need to make sure that patients are aware of them and to ensure that these clinical trials represent the populations that we intend to serve as healthcare providers in the United States, but also specifically in the world of endometrial cancer. Really exciting, promising results that we’ve had over the past year, year-and-a-half specifically that address the very desperate need for novel therapeutics to treat patients who have endometrial cancer.

So, for example, two major trials were published last year, presented at international meetings, looking at the real improvement in overall survival, really increasing the length of time patients can live with endometrial cancer that leverage the use of drugs called immunotherapy. So things like dostarlimab-gxly (Jemperli) or pembrolizumab (Keytruda), these are generic names for immunotherapy drugs that work very well in some subsets of patients with endometrial cancer.

This is something, some survival benefits that we have never seen before in the endometrial cancer space and rarely seen in the gynecologic oncology space and is a definite marker of huge success in terms of extending the lifespan of patients who suffer from this challenging to treat understudied, underfunded disease. Endometrial cancer is actually one of the lowest funded studies in the National Cancer Institute at NIH.

And so 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. In terms of your question for what patients should know about, about ongoing trials, I think this dovetails into several of the points that we’ll discuss during this interview of making sure that patients are their own advocate and having an advocate nearby and with them at all of their appointments.

 So it’s really important to ask their subspecialists, their oncologists or their gynecologic oncologists about if there are any clinical trials that the patients are eligible for. A lot of this comes down to, has the patient undergone genetic testing or molecular sequencing that looks at the specific mutations in the cancer tissue that sometimes will make patients eligible for certain clinical trials or others? And other times it’s just understanding that what opportunities are available within the health system and outside the healthcare system in which the patient is seeking care.

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.

I oftentimes suggest to patients, please ask me questions about your molecular subtyping. Ask me questions about what clinical trials you might be available for. There is a significant amount of trust that the health system needs to earn back from patients to allow them the headspace to trust the health system again, given historical, massive, ethical issues and trials in the past and patients and their loved ones feeling that clinical trials just means a big experiment and they don’t want to be experimented on. And what I often say to that is really, you have to understand the details of the trial and the science going into it and make sure that your doctor has your best interests at heart. But oftentimes these trials hold significant promise.

And the reason that you might be eligible for them is that the trial drugs might work better than standard of care, certainly for endometrial cancer we’ve seen that in the two major trials that came out this year. So I think my activation tip for this question is really to be able to ask your doctor about if you’re eligible for clinical trials, what your cancer mutational or genetic code is that might make you eligible for certain clinical trials, and where those trials are offered, if it’s at the health system that you are seeking care, or if it’s at a nearby health system, if you’re able and willing to travel.


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