Endometrial Cancer Biomarkers | Impact on Prognosis and Treatment

What are endometrial cancer biomarkers? Dr. Hinchcliff discusses how prognostic biomarkers, namely mismatch repair status and HER2, influence treatment, leading to more tailored strategies for patients.  

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

Download Resource Guide

See More from INSIST! Endometrial Cancer

Related Resources:

Essential Endometrial Cancer Testing

Essential Endometrial Cancer Testing

What Questions Should Patients Ask About Endometrial Cancer Testing?What Questions Should Patients Ask About Endometrial Cancer Testing? Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine?

Transcript: 

Katherine Banwell: 

Are there prognostic biomarkers that help determine how the cancer may behave? 

Dr. Emily Hinchcliff:  

Yeah. So, endometrial cancer, we now know that the molecular mechanism – so, what I’ve been talking about, these things that are happening inside the cancer cell – we now know that that can drive prognosis, and so, it used to be that we kind of had two big buckets of cancer. 

We used to say there’s Type 1 endometrial cancer and Type 2 endometrial cancer, and now, we’ve actually broken it down into molecular categories – so, into categories much more based on certainly what the cell looks like under the microscope, but also what’s going on inside the cell, not only to impact treatment, but also to give a patient a better look at what their prognosis is expected to potentially be, and we actually have changed our staging system pretty recently to incorporate some of those molecular characteristics that we now know to check for.  

Katherine Banwell:  

Talking about the biomarkers, how do biomarkers impact endometrial cancer treatment options? 

Dr. Emily Hinchcliff:  

Yeah, so I think specifically the two that I mentioned, the mismatch repair status and the HER2 status, have really robust data that tells us that we can better tailor our treatment strategy based on a patient’s status. So, for mismatch repair, for example, if someone is mismatch repair deficient, that tumor is going to respond very well, incredibly well, to immunotherapy. So, we now actually use immunotherapy in combination with chemotherapy to treat those cancers, especially for the cancers that have spread outside the uterus or the cancers that have gone through initial treatment and then come back. 

So, I think that is a really great option. Similarly, that HER2 receptor, there is a medicine that targets that receptor, which is that cell surface molecule, that thing that’s sitting on the cancer surface, and can treat that cancer better if that marker is expressed. 

What Questions Should Patients Ask About Endometrial Cancer Testing?

What questions should patients ask about endometrial cancer testing? Dr. Hinchcliff highlights key questions, while stressing the importance of understanding both germline and somatic tests and their impact on treatment. She emphasizes the value of open, ongoing communication with doctors.  

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

Download Resource Guide

See More from INSIST! Endometrial Cancer

Related Resources:

Essential Endometrial Cancer Testing

Essential Endometrial Cancer Testing

Endometrial Cancer Biomarkers | Impact on Prognosis and Treatment

Endometrial Cancer Biomarkers | Impact on Prognosis and Treatment

Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine?

Transcript: 

Katherine Banwell:  

Right. And so, what questions should patients ask about their test results? 

Dr. Emily Hinchcliff:  

Yeah, so, I think first and foremost, just getting an understanding of what tests your doctor is sending is really important. This should be an open conversation, and it’s a conversation that you should actually have as you are going throughout your cancer journey. It’s not just a conversation at your diagnosis, it’s something that, if your cancer comes back, it should be reassessed. Are there additional markers that we should send that we didn’t send in the upfront setting? Do we have a complete picture of my cancer? 

And so, I think that is definitely a question to ask, is what tests are you sending, and what is the outcome of those tests, right? How would that test change your potential management or change the options that you have for me in terms of my cancer treatment? The other thing that I will say that I think can be confusing for patients as we think about the genomics and genetics of a cancer is that it’s really important to understand the difference between something called germline and something called somatic testing, and so, I’m going to explain that, because I think it can be confusing. 

The first, germline, is a test that is testing the genetics of the whole body – so, of a person – to see if there’s anything that’s hereditary that might have predisposed them to getting cancer. And so, that is something that, if it is abnormal, it may mean that family members need to get tested, and there are things that we can do to try and prevent cancers for other people in your family that might be at risk. So, that is germline testing. 

That’s different than somatic testing. Somatic testing is when we test the tumor itself to understand what about this tumor allowed it to become abnormal, allowed it to grow abnormally and keep growing the way cancer does? And both of those are really important. So, I think as you ask your doctor, “What tests are you sending?”, it’s important to ask about tests in both of those categories. 

Essential Endometrial Cancer Testing

 

What testing should endometrial cancer patients undergo after diagnosis? Dr. Hinchcliff explains the importance of determining cancer stage, histology, and performing biomarker testing, as these factors can guide more targeted treatments.

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

Download Resource Guide

See More from INSIST! Endometrial Cancer

Related Resources:

What Questions Should Patients Ask About Endometrial Cancer Testing?What Questions Should Patients Ask About Endometrial Cancer Testing? Endometrial Cancer Biomarkers | Impact on Prognosis and Treatment

Endometrial Cancer Biomarkers | Impact on Prognosis and Treatment

Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine?

Transcript: 

Katherine Banwell:   

Dr. Hinchcliff, what testing should people with endometrial cancer undergo after diagnosis? 

Dr. Emily Hinchcliff:  

So, when I think about a cancer diagnosis, there are first two big buckets of things that are important to understand. One is the cancer stage, meaning where did the cancer start, and then, where has it potentially spread to. The other is the cancer histology, or what do the cells look like under the microscope. And in endometrial cancer, there are actually a variety of different subtypes of endometrial cancer that can be differentiated based on what they look like under the microscope. Once you have those as your framework, I think the next step is to better understand what’s called biomarker testing, or the genetics of your cancer. 

Katherine Banwell:  

Would you define biomarker testing? What does that mean? 

Dr. Emily Hinchcliff:  

Yeah. So, biomarker testing – while, under the microscope, we can determine what kind of cancer something is, we can’t tell what’s going on inside the cancer cells itself, and so, biomarker testing is an umbrella term for a variety of different tests that really try and assess what’s going on inside the cancer, what are the genetics making the cancer cells divide and grow abnormally, and also, what are the things that might be expressed or on the cancer cell surface that are potentially targets for us to leverage to treat the cancer better. So, what is unique to that cancer, either the patient’s own cancer individually or that cancer type in general, that we can use to our benefit to treat the cancer better.  

Katherine Banwell:  

What are the most common biomarkers associated with gynecologic cancers?  

Dr. Emily Hinchcliff:  

So, in endometrial cancer specifically, I think if there are a couple take-homes that I can emphasize to patients in this talk today, the first is it is essential to know your what’s called mismatch repair status. So, mismatch repair is one of the things that can happen inside a cancer cell, and when that goes awry, when that becomes abnormal, it means that the cancer has particular features that we can use to treat it better. 

And so, the two categories of mismatch repair are you can be mismatch repair deficient, meaning there’s something abnormal in that machinery inside the cancer cell, or mismatch repair proficient, meaning that that machinery is still intact, and the reason for that being so important is that in endometrial cancer, if someone’s cancer is mismatch repair deficient, we can use a whole class of drugs called immunotherapy, or leveraging your own immune system using medicines to try and treat that cancer better. 

So, I think knowing that about your cancer type is really essential in endometrial cancer. I think the other thing that is important to know is in endometrial cancer, some subsets will express a receptor – so basically, something on the cancer surface – called HER2, and if you are HER2-positive, that also can be a target for potential drugs. So, those are two really important biomarkers in endometrial cancer that I think it’s important that patients know that they have been tested, and then know what their results are. 

[ACT]IVATED Endometrial Cancer Resource Guide III

Download Guide

ACTIVATED Endometrial Cancer Resource Guide_Dr. Ramez Eskander

Download Guide

See More from [ACT]IVATED Endometrial Cancer

Share Your Feedback

How Can Patients Stay Informed About New Treatments and Strategies in Gynecologic Cancer Care?

What gynecologic cancer care questions should patients and families ask? Expert Dr. Ramez Eskander from UC San Diego Health discusses the value of patient education, second opinions, credible resources, and proactive patient advice to help optimize care. 

[ACT]IVATION TIP

“…be informed. Explore your options and opportunities. Again, there are strategies that are available to you both on the Internet, publicly available, but also through colleagues, through friends, and a network that you can build through support groups, even at your institutions. It’s never too early to ask about clinical trials so that you can make sure you’re educated and informed as you look to make decisions. Because if you try to take all of this into consideration and at one time point, it can be a little bit overwhelming.”

Download Guide

See More from [ACT]IVATED Endometrial Cancer

Related Resources:

Overcoming Gynecologic Cancer Challenges for Optimal Care

Overcoming Gynecologic Cancer Challenges for Optimal Care

What Are the Barriers to Endometrial Cancer Care in Underserved Communities?

What Are the Barriers to Endometrial Cancer Care in Underserved Communities?

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Lisa Hatfield:

Dr. Eskander, as new treatments and strategies emerge, how can patients and their families stay activated and ensure they’re benefiting from the latest advancements? And what should they be asking their care team to make sure they’re up to speed with the latest in gynecologic cancer care?

Dr. Ramez Eskander:

This is so important to me for patients to feel like they’re empowered and educated. I believe that patients are their greatest advocates. This is where family and friends are also an important part of the care team. From my perspective, it’s very beneficial to have someone in the room with the patient as they’re having conversations about treatments and treatment strategies to take appropriate notes, to be informed, and to not feel bad about asking questions, to not feel bad about asking the relevance of a second opinion.

Any provider should never take offense to a patient asking for a second opinion. In fact, I would say, I encourage my patients. I say, listen, if you have questions and you…if you would like to get someone else’s perspective, please do so. I want that, and I want you to come back to me with potentially a different option or a question that my hope is to answer.

We have a shared goal of making sure our patients have the best possible clinical outcome. That is our north star. So as new treatments and strategies emerge, try to stay informed. There are multiple platforms available, of course, via the Internet, for example. I will just be cautious in saying not all of that information is accurate. So if you’re going to use a platform that’s publicly available, the web, make sure that you’re trying to go to areas where a resource is vetted and reliable.

The National Cancer Network, the NCCN, the National Cancer Institute, clinicaltrials.gov for clinical trials, vetted and established advocacy organizations, and then taking that information, using it as a foundation in which you can build upon when you have conversations with your providers. But again, this is where I think not just the patient alone, but patient, family, and friends can really work together to try to develop.

And all of our meetings, the cancer meetings that we have, for example, for gynecologic cancer as a Society of Gynecologic Oncology, there’s a foundation for women’s cancer. There are opportunities for education, the American Society of Clinical Oncology. These are publicly available resources, websites where you can go to and look for patient facing material to make informed decisions about the management of your cancers.  And, of course, when you’re asking to talk about clinical trials, how do I stay up to date? Again, it’s a dialogue. It’s never too early to ask. I worry sometimes that patients don’t want to bring up a clinical trial, because they fear that bringing that up means that they’ve exhausted all treatment strategies.

Quite contrary to that, the earlier you begin the conversation, the greater opportunity you’re going to have to potentially identify a clinical trial for which you may be eligible. And that will help you through your treatment paradigm. Because if you don’t, you may pass that up, because you’re no longer eligible, because you’ve had too many prior lines of treatment, for example. And having that conversation early will also help you prepare as you go through the treatment paradigm so that if you need to make a decision about potentially enrolling in a trial, you’re established, you’re ready to do so rather than trying to effectively push this forward quickly without making sure that you have the required information that you need.

So it’s a multi-pronged approach. It’s going to require support systems, undoubtedly, multiple resources are available, and then subsequently engaging those resources to use that information to guide your conversations.

My activation tip is be informed. Explore your options and opportunities. Again, there are strategies that are available to you both on the Internet, publicly available, but also through colleagues, through friends, and a network that you can build through support groups, even at your institutions. It’s never too early to ask about clinical trials so that you can make sure you’re educated and informed as you look to make decisions. Because if you try to take all of this into consideration and at one time point, it can be a little bit overwhelming.

Lisa Hatfield:

Okay. Thank you so much. And I really appreciate your comment about it’s okay to talk to your provider about getting a second opinion. I was terrified of that, because I really love my doctor. He is great. And I didn’t want to bring that up, but anybody who’s watching this, Dr. Eskander said it’s okay to talk to your provider about seeking out a second opinion.

And it may help in your care in making decisions too. So I appreciate that you said that. And also that you said to make sure you go to vetted sites for information. When I was diagnosed with blood cancer, the first place I went to that I wasn’t supposed to was Google, got all kinds of information that I didn’t want to read. So go to those vetted sites. I think that’s great advice. So thank you so much.

Dr. Ramez Eskander:

Thank you, Lisa.

Share Your Feedback

What Are the Barriers to Endometrial Cancer Care in Underserved Communities?

 

What are common endometrial cancer care barriers? Expert Dr. Ramez Eskander from UC San Diego Health discusses common care barriers for underrepresented communities and how patients and healthcare professionals can help address these barriers to optimal care.

[ACT]IVATION TIP

“…we have to be committed to this. This is not just a patient issue. This is an issue that is shared, a responsibility that’s shared across institutions, clinicians. I would strongly suggest that patients advocate for themselves. Don’t be afraid to ask questions. Try to determine what resources might be available to assist if you are facing particular obstacles to help mitigate some of the barriers that may impact treatment in this era.”

Download Guide

See More from [ACT]IVATED Endometrial Cancer

Related Resources:

Overcoming Gynecologic Cancer Challenges for Optimal Care

Overcoming Gynecologic Cancer Challenges for Optimal Care

How Can Patients Stay Informed About New Treatments and Strategies in Gynecologic Cancer Care?

How Can Patients Stay Informed About New Treatments and Strategies in Gynecologic Cancer Care?

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Lisa Hatfield:

Dr. Eskander, what are some common barriers that patients with endometrial cancers face in accessing care, especially in underrepresented communities?

Dr. Ramez Eskander:

The issue around access to care and disparities in care is an important one. And I will say that as we move to this world of more molecular testing, identifying changes in the tumor or in genetic findings that predispose patients to potentially responding to therapies, there’s concern that it may increase disparities in cancer outcome. And that’s because is everybody getting access to tumor testing? Is everybody getting access to genetic testing? Are they informed? Are they educated about the implications?

This is so complex, and I think, Lisa, we could talk for an hour just about the issues surrounding barriers to care disparities and outcome. I will say that the goal is to make sure that all patients have access to these important tests. The goal is to make sure that all patients are educated to the same capacity. Understanding that health literacy can vary quite substantially so that we can work to try to develop more equitable treatment approaches and improve clinical outcomes across the board.

Do we see barriers? Absolutely. It could be barriers related to language. It could be barriers related to travel that a patient may not be able to travel the distance needed to see the provider or the specialist that can provide them the treatment that they need, or the counseling. It could be copay costs, can be prohibitive, it could be concern, trust issues around, do I want to get genetic testing? I’m worried this information is going to be used against me rather than help inform my cancer treatment strategy.

So it’s layered. It’s multi-pronged. There are several initiatives that are being deployed at different centers to try to improve and break down these barriers so that we can help patients overcome. And these could be social workers, patient navigators, case managers that reach out to these patients, resources that are available to facilitate transfer transportation, and bridge gaps that some of these patients might be facing.

And this is just in standard of care, completely independent of the barriers that patients face when they look to enroll in a clinical trial, for example, for treatment of their cancers. My [ACT]IVATION tip is we have to be committed to this. This is not just a patient issue. This is an issue that is shared, a responsibility that’s shared across institutions, clinicians. I would strongly suggest that patients advocate for themselves. Don’t be afraid to ask questions. Try to determine what resources might be available to assist if you are facing particular obstacles to help mitigate some of the barriers that may impact treatment in this era.

Share Your Feedback

Overcoming Gynecologic Cancer Challenges for Optimal Care

What are the goals and strides in gynecologic cancer treatment? Expert Dr. Ramez Eskander from UC San Diego Health discusses how endometrial cancer and ovarian cancer treatment has evolved, different approaches to care, and proactive patient advice for optimal care.

[ACT]IVATION TIP

“…be informed. Ask the right questions. Make sure that you understand your treatment options for every stage of your disease. It is never too early to talk to your clinician or provider about clinical trial opportunities. It is never too early to talk to your provider about what systemic or chemotherapeutic or targeted therapies are available to you if you do recur so that you can begin to make informed decisions and plan towards management of these cancers.”

Download Guide

See More from [ACT]IVATED Endometrial Cancer

Related Resources:

What Are the Barriers to Endometrial Cancer Care in Underserved Communities?

What Are the Barriers to Endometrial Cancer Care in Underserved Communities?

How Can Patients Stay Informed About New Treatments and Strategies in Gynecologic Cancer Care?

How Can Patients Stay Informed About New Treatments and Strategies in Gynecologic Cancer Care?

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Lisa Hatfield:

Dr. Eskander, even with recent advancements, what are some of the biggest challenges still facing patients with gynecologic cancers? And how can patients face these challenges head-on in order to get the best possible care?

Dr. Ramez Eskander: T

he management of ovarian cancer and endometrial cancer has really dramatically changed over the last several years, principally because of discoveries of effective treatments. And that’s also motivated by our understanding of the molecular drivers of these cancers. We’re learning more and more about what abnormalities on a molecular or genetic level may exist in these cancers that can inform treatment. When we think about the challenges, despite these advancements, it’s really focused primarily on the fact that we still deal with patients whose disease recurs after treatment.

So, for example, with ovarian cancer, patients have surgery and chemotherapy at diagnosis. And sometimes you start with chemotherapy and do surgery, followed by additional chemotherapy. And sometimes you do surgery, followed by chemotherapy. And that’s a decision that’s made based on multiple factors. Patients receive treatment, as I alluded to in the front line. But unfortunately, despite the advances that we’ve made in molecular testing and in therapeutics, a large proportion of patients with advanced stage disease may develop disease recurrence.

And in the context of disease recurrence, it’s difficult to achieve prolonged remission. So what we deal with is disease that is in remission for a period of time after primary therapy. And if that ovarian cancer recurs, that subsequent remission may be shorter than the primary remission. Now we can go into a lot of detailed conversations about what drugs we’ve identified to be effective in different disease settings.

And as I alluded to, we’ve made significant strides, but we still need to do better and identify more effective treatments, both in the front-line and in the recurrent setting. And I am very passionate about clinical trials, which are essentially the foundation in which we’ve identified effective treatment strategies that are now FDA-approved. And so I really want to empower patients who are dealing with advanced stage ovarian cancer diagnosis, really understand what your options are, understand whether or not you’re eligible for clinical trials in the face of a disease recurrence. 

Some of these studies are limited to specific time intervals during therapy or limited based on the number of prior treatments. And you want to have options available for you. And those options are going to be available by asking questions at these different phases of your treatment so that you can make sure that you’re making the most informed decision. And it’s the same thing with endometrial cancer. A large proportion of our patients are diagnosed with early stage disease that is successfully managed with surgery. Sometimes radiation is required. There are patients with advanced stage disease who are needing chemotherapy.

And again, in those circumstances, in the face of disease recurrence, we need more effective treatment strategies. Recently, we’ve incorporated immunotherapy plus chemotherapy in the management of advanced stage or recurrent endometrial cancer patients. Progressing after that leaves us with more limited options for which there are many clinical trials that are active in accruing patients to offer more effective treatment opportunities.

So my [ACT]IVATION tip in the context of this question is be informed. Ask the right questions. Make sure that you understand your treatment options for every stage of your disease. It is never too early to talk to your clinician or provider about clinical trial opportunities. It is never too early to talk to your provider about what systemic or chemotherapeutic or targeted therapies are available to you if you do recur so that you can begin to make informed decisions and plan towards management of these cancers.

Lisa Hatfield:

And I have a quick follow-up question to that, because you mentioned clinical trials, and I know you’re an advocate for patients seeking a second opinion. So if a patient who lives in an area where maybe there are not a lot of clinical trials, would like more information on that. And I live in an area where we don’t have a lot of clinical trials, and I have a great local oncologist, and he does a great job. But if I wanted to reach out and ask a specialist like you, a one-time consult, maybe, what are my options for a clinical trial? Can a patient do that? Can they do like a one-time consult with a specialist?

Dr. Ramez Eskander:

That is an excellent question. There are specific rules around what providers can do. And I will venture to say I’m not an expert in those rules. I’ll give you a pragmatic example. There are rules that will not allow a provider to have a clinic visit virtually with someone who’s outside of their state. So, it does set some boundaries. Now, what I will say, and you alluded to this already, Lisa, which is talk to your provider. That is a very great starting point.

If you feel like you’re not making as much progress, there are really amazing advocacy organizations that have capacity to help patients make these decisions, whether it’s organizations regionally or if it’s national organizations. I will just say also if you go to clinicaltrials.gov, it’s a website that’s available to us all and you type in a diagnosis like ovarian cancer or endometrial cancer, and you search for Phase III clinical trials, it will provide you with contact information for sites and you can look by sites in your state or regionally.

And I know it can feel daunting to do that. And that’s part of the reason that I’m such a big advocate for second opinions is because when patients are being treated for a cancer diagnosis, searching for your own clinical trial without any real guidance can feel like information overload. So it’s for me, reach out to your primary provider, utilize any advocacy groups that are in your region or national advocacy groups, such as the Ovarian Cancer Research Alliance or the Clearity Foundation. There are many others that can help patients kind of navigate for ovarian cancer diagnosis or second opinions. And then do your homework and try to identify whether or not there’s a provider who might be of greater assistance.

Share Your Feedback

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. 


Share Your Feedback

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.


Share Your Feedback

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.


Share Your Feedback

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.

Download Guide | Descargar Guía en Español

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:

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.


Share Your Feedback:

Create your own user feedback survey

[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. 

See More From [ACT]IVATED Endometrial Cancer

 

[ACT]IVATED Endometrial Cancer Resource Guide en español II

Descargar Guía

Spanish ACTIVATED Endometrial Cancer Resource Guide

Descargar Guía

Download Guide

See More from [ACT]IVATED Endometrial Cancer

[ACT]IVATED Endometrial Cancer Resource Guide II

Download Guide

ACTIVATED Endometrial Cancer Resource Guide

Download Guide

Descargar Guía en Español

See More from [ACT]IVATED Endometrial Cancer