Why Should Endometrial Cancer Patients Engage in Their Care?

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What role do patients play in their endometrial cancer care and treatment decisions? Gynecological cancer expert Dr. Nita Karnik Lee explains the shared decision-making process and discusses the benefits of engaging in conversations with your healthcare team. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from Evolve Endometrial Cancer
 

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What Are Common Endometrial Cancer Health Disparities?

What Are Common Endometrial Cancer Health Disparities?

 Tools for Improving Access to Quality Endometrial Cancer Care

Tools for Improving Access to Quality Endometrial Cancer Care

 Advances in Endometrial Cancer Treatment and Research

Advances in Endometrial Cancer Screening and Detection

Transcript:

Katherine Banwell:  

Would you define shared decision-making, Dr. Lee? Tell us why it’s so important for patients to engage in their care.  

Dr. Nita Karnik Lee:  

Shared decision-making is sort of the idea model, right? It’s this idea that we want to, as physicians, know what values my patient has, and I want to be able to impart information that I think will be helpful for them to make a decision. Sometimes the decisions are do I want to do surgery or not? Sometimes the decision are do I want to do chemo or continue chemotherapy? Those are very different decisions, and shared decision-making is a way of saying we’re going to have some kind of communication back and forth where I’m like, hey, this is what I think is happening. These are the choices that you have.  

And you telling me, okay, these are the things that I’m worried about. These are the things that align with what I want to do. I think it’s really important, though, to not have physicians put it out as, oh, well, I just let the patient decide, right, because just like when my car breaks down or my lights don’t work at my house and I get an electrician to come and see, I have no idea what they’re talking about.  

I have no concept. I really rely on them to say, well, I don’t know what kind of wire for you to use in my house. I have no idea. So, we really want to be careful that shared decision-making doesn’t turn into a menu of choices that we, the physicians, are actually giving up their role in advising if that makes sense. A lot of shared decision-making is in that relationship of trust and saying I really get this. I get what you’re telling me.  

I have patients, for example, who are on chemotherapy for a recurring disease, either uterine or ovarian cancer, and a lot of times you’re making these decisions of, okay, quality of life, like, what are events that are coming up? Sometimes they don’t always align with what I think is best, but if somebody tells me, you know what, I’m going to do these three cycles, but my son’s wedding is coming up. And I really need a month off beforehand, that aligns for me because I think that’s important, but maybe it’s not the standard.  

And so, kind of really knowing your patient, from my perspective, and also, as patients, not being afraid to say these are my values, and this is what’s really important to me. People will hear it, and they’ll feel better equipped to be able to help you guide those decisions with the caveat that sometimes I’ll say, look, you know what, I’m pretty worried about you. Yes, let’s give you a month off before, but let’s scan right after the wedding and see what’s going on.  

And then we can decide what we’re going to do after that. Or holiday times are oftentimes where I really give people sometimes a break. If they’ve been on chronic chemotherapy, sometimes this is a time where I’d say I’m really worried. I don’t think we can give you a break. People will tell me I know you’re worried about me, but this is really important. And we work together on it. I think it’s knowing the medical background, and then making sure you know what your patient wants, from that perspective.  

Katherine Banwell:  

And having an open line of communication. 

Dr. Nita Karnik Lee:  

Yes. 

Katherine Banwell:  

That’s what you’re saying. 

Dr. Nita Karnik Lee:  

Exactly. I think you hit it on the nail. Having an open line of communication, and not feeling that you need to hold back from that. I think it’s much easier for our whole team. I work really closely with our nurses and PAs, and sometimes one of the nurses will be like, you know what, she really wants to talk to you about this. Sometimes it’ll be maybe not even talking to your doctor first, but talking to the person on your team you feel closest to, to say I’ve been really thinking about this. I know Dr. Lee wants to do this, but this doesn’t align with my kid’s graduation, or my grandkid’s something, and those things are really important to get that open.

Tools for Improving Access to Quality Endometrial Cancer Care

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What proactive steps can endometrial patients take to access the best care? Gynecological cancer expert Dr. Nita Karnik Lee walks through self-advocacy steps that may encourage improved patient outcomes. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from Evolve Endometrial Cancer
 

Related Programs:

What Are Common Endometrial Cancer Health Disparities?

What Are Common Endometrial Cancer Health Disparities?

 Why Should Endometrial Cancer Patients Engage in Their Care?

Why Should Endometrial Cancer Patients Engage in Their Care?

 Advances in Endometrial Cancer Treatment and Research

Advances in Endometrial Cancer Screening and Detection

Transcript:

Katherine Banwell:  

How is the medical community dealing with these disparities? How are they handling them? 

Dr. Nita Karnik Lee:  

You know, I think a lot of it is, again, sort of educating. You have to think about you want patient education. You want provider education. Sometimes I have patients who come to me and say, you know what, I reported these symptoms to my doctor, and they said it was nothing, or they told me it was a UTI. So, we often think about, when we’re making an intervention, we want to make sure that providers who are seeing patients first-line are also hearing about this as in their differential diagnosis, and that patients have enough knowledge that they feel really comfortable advocating for themselves. Many of our patients who are cancer survivors will tell us. 

Or when they speak on their own in different ways or say listen to your body, make sure you’re advocating for yourself, and if somebody doesn’t listen, find another doctor. I hate to say it, but you just have to know that those are things that happen. I think structurally, as providers, we have to be really aware of our own biases that we bring to patients and their families and our own health system.  

How are we set up to help people more? I think a lot of it is quick access to care. And so, I think that’s where we try to make some differences in terms of both policy and policy within a health system, and then larger policy that’s kind of maybe more not just one hospital, but statewide or nationwide.  

Katherine Banwell:  

You mentioned advocating for oneself and how important that is. If a patient feels like they’re not receiving good care or they’re being treated unfairly, what steps should they take to access better overall care? 

Dr. Nita Karnik Lee:  

Well, I mean, a little bit of it’s complicated, because so many of us are kind of limited by our insurance. We don’t always have the ability to do all the things. It can be scary, and it can be intimidating. I think one of the things that could be very helpful is to prepare yourself with a list of questions, to be like these are the questions. These are the things that I’m not feeling are being heard, and potentially even getting a second opinion. You can say this in a way that you can sort of feel like your doctor doesn’t need to feel bad. 

I even think second opinions, for me, I’m all for them. More information is better. That’s a way of positing it and saying, look, I know we’ve gone through these symptoms. These are my concerns. I don’t think they’re being addressed, and I would really like to get another opinion. Physicians are often like, yes, get another opinion. And so, those are ways that I think people can find the right fit for the physician that they want. 

What Are Common Endometrial Cancer Health Disparities?

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How can a patient’s individual circumstances impact the quality of their endometrial cancer care? Gynecological cancer expert Dr. Nita Karnik Lee reviews common health disparities and their impact on patient outcomes. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from Evolve Endometrial Cancer
 

Related Programs:

Tools for Improving Access to Quality Endometrial Cancer Care

Tools for Improving Access to Quality Endometrial Cancer Care

 Why Should Endometrial Cancer Patients Engage in Their Care?

Why Should Endometrial Cancer Patients Engage in Their Care?

 Current Endometrial Cancer Treatment Approaches

Current Endometrial Cancer Treatment Approaches

Transcript:

Katherine Banwell:  

Dr. Lee, disparities in healthcare can impact a patient’s experiences and their outcomes. What are common health disparities that gynecological cancer patients can face? 

Dr. Nita Karnik Lee:  

Yeah, this is really – I always think about the cancer care continuum. This is the model that I think of. I think of what is risk reduction and prevention? What is early diagnosis and getting to the right person to take care of your cancer? Did you get the right treatment? And then did you get the right follow-up? 

Disparities can happen along those ways, and some of it can be related to access to care. Access, oftentimes, people just think it’s insurance, but it’s not. It is insurance. That’s a big part of it. We know that our states that don’t have as much insurance support for our patients who are poorer actually do worse. There’s worse survival. 

But I think it’s also does the person feel comfortable with the healthcare system? Are they connected with their doctor? Is it a language issue? Is it a bias issue that they’ve felt that they haven’t been comfortable in their health system before? All of those things can create these roadblocks along that whole cancer care continuum. Access really means more than just like it has to be acceptable. It has to be available. 

It has to be something that the person can feel comfortable with when they make a decision about treatment. That’s where we see things like people say, oh, that person declined surgery. I’m like, but did they really decline? Why did they decline? Did anyone get into what they were worried about, what their experience had been? So, we can’t just blame the patient and say, oh, they just didn’t want treatment. It’s really a complex area. The biggest disparity we see is in uterine cancer. 

So, Black women are much more likely to die of uterine cancer at any stage, especially older Black women. Some of this is access, but some of this is that there are actually differences in biology, and it’s kind of tricky because nobody thinks there is. Race is really a construct, right? It’s not really a biological difference, but there are differences in the types of more aggressive cancers that Black women get, and there are a lot of different reasons that people have started to look at that, both genetically, but also environmental influences, stress influences. 

So, the biggest disparity is probably in the uterine cancer, but unfortunately, we still see disparities by race in ovarian and cervical cancer. We also see disparities by income and insurance type. And so, I think those are kinds of things that are just the larger picture. 

Expert Perspective | Managing the Emotional Aspects of a Gynecologic Cancer Diagnosis

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What emotional support and resource are available for gynecologic cancer patients? Dr. Hinchcliff discusses leveraging personal networks and highlights key resources like the Society for Gynecologic Oncology and ASCO.

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

See More from Evolve Endometrial Cancer
 

Related Programs:

Current Endometrial Cancer Treatment Approaches

Current Endometrial Cancer Treatment Approaches

 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:  

How do you counsel patients who might be having emotions around their gynecologic cancer? What advice and resources are available?  

Dr. Emily Hinchcliff:  

Yeah. So, I think that a cancer diagnosis is a life-changing experience. Even for patients who have early-stage cancers, hearing that word “cancer” on the phone, in the doctor’s office, and having to be the one to then tell family members and understand what that means for their life is truly a pivotal moment, and it does bring up all sorts of emotions and need for support. 

So, what I would say is, first and foremost, it can be really common that cancer patients sort of retreat into themselves and want to be more private. I think that I would encourage people to really use their support network that they have. Everyone’s different, and so, I definitely want them to do what feels right for them, but making sure that you leverage whatever support networks you have in your life is sort of the first foundation.  

Second, I think that there are just so many excellent resources out there for patients facing a cancer diagnosis. Certainly, in endometrial cancer, there are our big national groups of physicians. We put out a ton of information that is patient-focused, so, that is at a level that patients can understand.  

The two that I think of are the Society for Gynecologic Oncology is a big resource for patients with gynecologic cancers, and then, the overarching cancer society ASCO is another place that has a ton of cancer resources. I also think that patient support groups can be really helpful. There are many, many – so, my institution has one that is more specific to our institution as part of our institutional branch of the Woman to Woman program. 

There are also national, or city, or state cancer support groups, and I think that those can be really helpful to gain mentorship from someone who’s been through it and from someone who is a little bit further along in their journey than you might be as the patient that’s just getting a diagnosis, for example, and that can be really helpful so that you have that bird’s-eye view that sometimes, right after your own diagnosis, you just don’t have the perspective to understand. 

Expert Perspective | The Value of Empowering Endometrial Cancer Patients and Care Partners

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How can patients feel empowered after an endometrial cancer diagnosis? Dr. Hinchcliff emphasizes seeing a GYN oncologist, asking questions, and bringing a care partner to appointments for support and understanding key decisions.

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

See More from Evolve Endometrial Cancer
 

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What Questions Should Patients Ask About Endometrial Cancer Testing?

What Questions Should Patients Ask About Endometrial Cancer Testing?

 Questions to Ask About Endometrial Cancer Clinical Trials

Questions to Ask About Endometrial Cancer Clinical Trials

Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine?

Transcript:

Katherine Banwell:  

As a provider, Dr. Hinchcliff, how do you empower care partners and patients who have been diagnosed with endometrial cancer? 

Dr. Emily Hinchcliff:  

So, I think that one of the most important things about a diagnosis of cancer is to develop the relationship with your physician. I think that it is truly a partnership, and it is an incredibly important thing as you think about the next steps in your treatment. For someone who’s diagnosed with endometrial cancer – or, honestly, cancer in general – making sure that you’re seeing a cancer specialist in obstetrics and gynecology – it can actually be sometimes a little bit difficult. 

You might have gotten your diagnosis with a general OB/GYN, but it’s very important to see a GYN oncologist – a cancer-specific doctor – because we’ve actually shown that patients who see GYN oncologists are more likely to get guideline-appropriate care – so, care within what we think of as the right standard – and then they tend to do better with their cancer. So, that’s kind of the first step, is finding that doctor and developing the relationship with them.  

The second thing that I would say is that you should ask questions. Bringing people to your appointments to have an extra set of ears is always helpful. Taking notes and trying to keep track yourself of what was talked about in your appointment, I always encourage my patients to do, but really, asking questions. So, making sure that you know what those molecular tests are that your doctor is sending, making sure you know, once they’re sent, what your results were and how that might change what your treatment will be. 

Now, you don’t need to go and get a degree in biology or go to medical school. I think that that’s a lot to ask someone going through a cancer journey, but it is really important that you understand where those key decision points might be made because that allows you to feel not only like your own advocate, but that you have some ownership of those decisions and you understand why the decisions are being made in the way that they’re being made. 

Questions to Ask About Endometrial Cancer Clinical Trials

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What questions should patients ask about endometrial cancer clinical trials? Dr. Hinchcliff outlines key inquiries regarding trial structure and eligibility and encourages patients to explore online resources and support groups for additional information.

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

See More from Evolve Endometrial Cancer
 

Related Programs:

Current Endometrial Cancer Treatment Approaches
Advances in Endometrial Cancer Treatment and Research
 Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

Transcript:

Katherine Banwell:  

What questions should endometrial cancer patients ask their doctor about a potential trial? 

Dr. Emily Hinchcliff:  

I think the two important things to ask are what is the structure, what am I actually going to get, or what could I get, depending on how many of those arms exist on the trial. 

Katherine Banwell:  

Would the doctor know that specific information, though? 

Dr. Emily Hinchcliff:  

It’s a good question, actually. So, generally speaking, most of us as physicians, in order to offer a trial to you, we have an overarching structure of that clinical trial. There may be some nuances about what the exact enrollment is in terms of the majority of the patients get this treatment, whereas a small minority get this treatment, or because of this patient’s specific mutation profile, they must be enrolled on this subset of the trial. 

So, there are some nuances there that, generally speaking, if I as the physician don’t know, I will contact what’s called my clinical trial coordinator or my research nurse, and they can come spell out some of those nuances, but if your doctor’s recommending a trial to you, they generally know what is the overarching goal, and what is the overarching treatment being tested. 

Katherine Banwell:  

Okay. How can patients learn more about clinical trials? 

Dr. Emily Hinchcliff:  

So, there are a lot of resources online. To some extent, it can be really overwhelming for patients to try and tease out am I a candidate, would I be eligible for a trial, or this trial, is this trial available at my institution. So, what I would say – first and foremost, ask your physician. I think that your physician is your advocate in this and your partner in your cancer care, and I think that certainly I and all of us as physicians feel really strongly that we can help you weigh those different options as you see them and as we learn about them.  

So, I think that that’s where I would start. I think there are a lot of online resources. The FDA and the government have a cancer trials website that you can go to and search for your specific cancer type. 

Many institutions – my own included – will have their own institutional trials website, where, on my institution, you can look up and see what trials do we have open on my institution, because obviously, the government will speak nationally, but your particular treating physician might not have the availability to give you that particular trial. And then, I also will say I think patient support groups are an incredible opportunity to understand what others have been going through and what treatments have been offered, and that can be a really helpful resource as well to get hooked into as a patient is trying to tease all this out. 

How Can You Access Personalized Medicine for Endometrial Cancer?

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How Can You Access Personalized Medicine for Endometrial Cancer? from Patient Empowerment Network on Vimeo.

How can endometrial cancer patients access the most personalized treatment approach for their individual disease? This animated video reviews key treatment considerations, the impact of biomarker test results on therapy options, and advice for engaging in care decisions. 

See More from Evolve Endometrial Cancer

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Endometrial Cancer Treatment Decisions | Factors That Impact Your Options

Transcript:

Endometrial cancer research is evolving quickly, leading to targeted treatment approaches and helping patients access more personalized care.   

So, what is personalized medicine? Personalized medicine – also called precision medicine – is a type of care that is based on the genetic makeup and individual characteristics of a patient’s disease.  

This information is gathered using biomarker testing, which identifies key markers such as genes, proteins, or other molecules in a sample of tissue, blood, or other bodily fluid. The results of this testing can give a more detailed picture of the tumor’s type, aggressiveness, and may help predict how the cancer will behave. 

The test results can also identify which treatment approach may be most effective, through the presence of certain molecular markers.  For example, if biomarker testing results reveal that a tumor has either high microsatellite instability (MSI high) or mismatch repair defects (dMMR), an endometrial cancer patient may benefit from immunotherapy.  

Or, if the results show the HER-2 or mTOR mutation, this could indicate that the disease may respond well to a targeted therapy. And the presence of estrogen or progesterone receptors in a patient’s tumor may suggest hormonally targeted therapies may be beneficial. 

In addition to biomarker test results, other factors that physicians consider when recommending a treatment approach include:  

  • A patient’s age, overall health, and any pre-existing conditions. 
  • The type, stage, and grade of endometrial cancer.
  • And the patient’s preference. 

When considering treatment, patients should discuss the pros and cons of each option with their doctor. And they should review potential side effects, understand how the treatment is administered, and how the therapy may impact their lifestyle.  

So, what steps can YOU take to access personalized care? 

  • Find out if your doctor has experience treating endometrial cancer. Consulting a specialist or getting a second opinion can help confirm your diagnosis and treatment plan. 
  • Next, request all essential testing, including biomarker testing, and discuss how the results may impact prognosis and therapy options.  
  • You should also ensure that you understand ALL of the treatments available to you – including clinical trials.
  • And, make sure to have a friend or loved one present during discussions, so you can talk about the information later and feel confident in your decisions.
  • Finally, don’t hesitate to share your opinion and ask questions about available options. Remember, YOU should be at the center of your endometrial cancer care. 

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

Monitoring for an Endometrial Cancer Recurrence

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Monitoring for an Endometrial Cancer Recurrence from Patient Empowerment Network on Vimeo.

How are endometrial cancer patients monitored for a recurrence? Expert Dr. Emily Ko shares insight about how monitoring is tailored to a patient’s individual disease and discusses the frequency of observation.

Dr. Emily Ko is a gynecologic oncologist and Associate Professor of Obstetrics and Gynecology at the University of Pennsylvania. Learn more about Dr. Ko.
See More from Evolve Endometrial Cancer

 

Related Programs:

Endometrial Cancer Treatment and Research Updates

 What Should Endometrial Cancer Patients Know About Clinical Trials?

 How Is Endometrial Cancer Staged?

How Is Endometrial Cancer Staged?

Transcript:

Katherine:

How are patients monitored for a recurrence, and are there approaches to help prevent a recurrence? 

Dr. Ko:

Sure, absolutely. Great question. It is important to continue monitoring patients, even after they’ve gone through treatment. So, I think of it as a multifaceted approach. Usually, it includes office visits, including a physical exam. It includes a thorough intake of all of their symptoms. 

It also includes – depending on the scenario – in some circumstances, regular imaging studies, such as a CT scan or MRI, and sometimes, we also do things like PET scans, and I think that does have to be tailored to the unique patient’s endometrial cancer, unique case, stage, histology, and we kind of tailor which tests we choose to do. The interval of monitoring can vary, so I would say generally speaking, it could be anywhere from three- to six-month visits, and with potentially added scans, as we talked about, and sometimes, we also do certain blood tests in certain cases where we may choose to follow a CA125 blood tumor marker. 

But, I would say that there are different, definitely variants to how we choose to monitor, and there are certain resources we tend to use, such as the NCCN guidelines that providers may reference, and sometimes may even share with the patients to explain why and how we choose to do the monitoring. 

How Is Endometrial Cancer Staged?

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How Is Endometrial Cancer Staged? from Patient Empowerment Network on Vimeo.

What are the stages of endometrial cancer? Expert Dr. Emily Ko explains factors involved in analysis for staging and what occurs in the body during each stage.

Dr. Emily Ko is a gynecologic oncologist and Associate Professor of Obstetrics and Gynecology at the University of Pennsylvania. Learn more about Dr. Ko.
See More from Evolve Endometrial Cancer

Related Programs:

Endometrial Cancer Treatment and Research Updates

 What Should Endometrial Cancer Patients Know About Clinical Trials?

 What Are Treatment Options for Endometrial Cancer?

What Are Treatment Options for Endometrial Cancer?

Transcript:

Katherine:

How is endometrial cancer staged? 

Dr. Ko:

So, the most classic, rigorous way to stage endometrial cancer is through a surgical procedure. So, what that usually involves is it does include a hysterectomy, removing the uterus and the cervix, usually also includes removing the fallopian tubes and the ovaries.  

And, at the same time, the surgeon will do a very thorough assessment of the abdominal pelvic cavity, basically looking around all those areas to see if there’s any signs of visible disease, anything they can see that looks like it could be tumor deposits in the abdominal cavity. If anything is seen, those deposits will be removed and biopsied, so that’s part of the staging procedure. 

And additionally, it’s important to try to assess the lymph nodes, typically. So, there are lymph nodes in the pelvic area, and then, higher up along the aortic area, and so, there are different surgical techniques that we can use to basically test or sample some of those lymph nodes, be able to remove them, send them to the pathologist, look under the microscope to see if there are any microscopic cancer cells that have traveled to those lymph nodes. 

So, that is all part of a surgical procedure, and with all the information collected from those tissue samples that are removed from the body and sent to the pathologist, but the pathologist then reviews all of that under a microscope, and then can issue a very thorough report describing where the cancer cells are located, and by definition, where the cancer cells are located then defines what the stage is of the cancer. 

Katherine:

Can you give me an example?  

Dr. Ko:

Of course. So, for example, if the cancer cells are located only in the uterus, and they’re not found anywhere else, then that is a stage I. If the cancer cells have traveled to the cervix area specifically, this we call a cervical stroma, that becomes a stage II. If the cancer cells have, for example, traveled to the fallopian tubes, or the ovaries, or the lymph nodes, then that becomes a stage III, and there are sort of substages within those categories as well. 

Katherine:

But stage III would be the highest or most severe? 

Dr. Ko:

So, there’s stage III, and then there’s actually stage IV. So, if the cancer cells have traveled outside of the pelvis into the abdominal area, then we consider that a stage IV. 

Katherine:

And that would be considered advanced endometrial cancer? 

Dr. Ko:

Right. So, by definition, “advanced” typically refers to stage III or IV.