Tag Archive for: endometrial cancer disparities

Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps

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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

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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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[ACT]IVATED: Empowering Endometrial Cancer Awareness & Action

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

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

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

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

Endometrial Cancer Risk Factors

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

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

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

Endometrial Cancer Disparities and Challenges

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

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

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

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

Endometrial Cancer Care Solutions and Successes

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

[ACT]IVATED Endometrial Cancer Program Resources

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

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

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

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

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

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

Factors in Endometrial Cancer Treatment Options

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

Dr. Ebony Hoskins and Mikki Goodwin

Endometrial Cancer Disparities 

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

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

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

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

Solutions Toward Better Endometrial Cancer Care

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

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

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

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

Dr. Ebony Hoskins

[ACT]IVATED Endometrial Cancer Program Resources

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

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

[ACT]IVATION Tip:  

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

 

What Disparities Exist in Treating Patients With Endometrial Cancer?

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What Disparities Exist in Treating Patients with Endometrial Cancer? from Patient Empowerment Network on Vimeo.

What do endometrial cancer patients and advocates need to know about disparities? Expert Dr. Ebony Hoskins shares noted endometrial cancer disparities in care and how patients can take action to ensure their best care.

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

[ACT]IVATION TIP

“…I always think it’s important that patients feel that they’re heard by their providers or doctors, feel free to ask any questions and so having that or talking about…we are not going to be able to change the biology, right? But we can change our voice, and we can change making sure the patient is heard, making sure they have a comfortable relationship with their provider.”

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See More from [ACT]IVATED Endometrial Cancer

Related Resources:

How to Explain Endometrial Cancer to Newly Diagnosed Patients

How to Explain Endometrial Cancer to Newly Diagnosed Patients

 What Role Does Hormone Therapy Play in Endometrial Cancer

What Role Does Hormone Therapy Play in Endometrial Cancer?

 What Is the Role of Surgery in Treating Endometrial Cancer

What Is the Role of Surgery in Treating Endometrial Cancer?

Transcript:

Mikki: 

Dr. Hoskins, what are the noted disparities seen in endometrial cancer treatment, and what are some of the actions being taken to combat them?

Dr. Ebony Hoskins: 

Well, I mean, first off, we know that Black women are diagnosed pretty much at the same rate as white women, but have a two times higher risk of death. And so that alone is a big disparity. We also see increased, I shouldn’t say increased, but more aggressive tumor types in Black women, and so we know that part. I think in terms of what we’re doing to combat it from a clinical trial standpoint, they, I think some of the clinical trials, have recognized that there is a low number of patients in these trials advancing and so there has been an increased effort in recruiting patients into these trials. I think there is more work being done, to understand the biology and why there’s a difference. Me as a provider I will always think, “Oh, it’s because women went to the doctor late or access to care.”

Dr. Ebony Hoskins:  

And then I’m like, “Well, no, no, no these women have access to care. They have access to insurance. They went to the doctor right away.” And so I think it’s very complex and deserves more study into it. In terms of my activation tips, in terms of disparity, I always think it’s important that patients feel that they’re heard by their providers or doctors, feel free to ask any questions and so having that or talking about…we are not going to be able to change the biology, right? But we can change our voice, and we can change making sure the patient is heard, making sure they have a comfortable relationship with their provider. I think that is important.

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