Endometrial Cancer Care: Access, Equity, and Self-Advocacy

Katherine Banwell:

Dr. Roque, are there barriers to accessing cutting-edge endometrial cancer treatments, and if so, how can patients advocate for themselves?

Dr. Dario Roque:

That’s a great question. I think, in general, there are always barriers to accessing treatments that might be currently available. But in general, most patients should have access regardless of where they live or where they receive care. All patients should have access to therapies that are currently approved for the management of endometrial cancer. What I mean by that is if it’s a drug that has already been FDA-approved, that is approved by national guidelines, every patient should have access to it, and they should have coverage through their insurance to be able to receive that therapy. I think where the gaps exist is in terms of access to clinical trials.

So, all of these drugs that we currently use, the reason they are approved and used broadly is that at some point they were tested, were investigated in a clinical trial, and they were found to be more efficacious and more effective than the standard therapy at the time. Clinical trials are still ongoing, and we have a lot of drugs that are being investigated currently in that setting of clinical trials, but clinical trials are not necessarily accessible to all patients primarily because a lot of these trials are conducted in big academic medical centers, which usually are located in more urban environments or large cities.

So, patients with endometrial cancer that live in a more rural setting and have to travel several hours to receive their care may not have access to some of those therapies, which I do think is a big gap in terms of access because you might not be receiving the benefit of being exposed to the medications being used in those trials.

Katherine Banwell:

What are the ongoing gaps in gynecologic cancer care, and how are they being addressed?

Dr. Dario Roque:

Yeah, certainly access to clinical trials, I think, is one of the bigger gaps. One way to try to overcome that as a patient, you can always ask your provider if they can connect you with a center that is conducting a clinical trial. It’s possible that you may not be able to access the center because again, if you have to travel four or five hours or across state lines, that might not be feasible, especially if the patient has a full-time job or if they’re also caretakers. But I do think, at least, having the conversation and determining whether or not clinical trials are accessible to them is always an important conversation to have with their providers.

I think some of the other gaps in care are understanding when to go seek medical attention. A lot of women don’t realize that even a little bit of postmenopausal bleeding or spotting is one of the earlier signs of endometrial cancer.

So, recognizing that once you go through menopause or even if you haven’t gone through menopause, but you’re having abnormal bleeding, making sure that you go talk to your gynecologist or your primary care doctor so that the proper evaluation is carried out. On the flip side to that, there are also providers who, just because they don’t deal with endometrial cancer or gynecological issues, may not be aware of some of the early signs of endometrial cancer and may not recommend the proper evaluation.

So, making sure you’re proactive, having the discussion with your provider, and any time you have abnormal bleeding, especially if that bleeding is after menopause, making sure that you go see an OB-GYN and that you have a biopsy performed. Often an ultrasound might be recommended, which is a good starting point, but an ultrasound is not a definitive diagnostic tool to completely rule out the possibility of endometrial cancer.

So, I think having some awareness and getting to care as fast as possible and making sure that you advocate for yourself if you’re having abnormal bleeding.

Katherine Banwell:

I have one more question for you: We’ve talked to other practitioners and researchers about how women of color are not getting the care they need. Have you seen that being an issue in endometrial cancer care?

Dr. Dario Roque:

Yes, it’s certainly the case, and there is a whole body of literature on the subject. And I think there are many ways through which women of color are not receiving the proper care. Some of this, again, at the time of diagnosis, they’re not receiving the proper diagnostic workup.

So, for example, they might only get an ultrasound and not get a biopsy, or sometimes the way that we use ultrasounds is to help us determine the likelihood of an endometrial cancer being present in a patient who’s having postmenopausal bleeding. And in some cases, based on the data that we have, we can rule out the possibility of an endometrial cancer if the lining of the uterus, the lining of the endometrium, is about four millimeters or less. However, this is why it is so important to have diverse representation in clinical trials: The data were primarily collected from white women.

Women of color, especially African-American women, have higher rates of fibroids, and fibroids can distort the endometrial cavity. So, an ultrasound looking at the endometrial lining in an African-American woman with fibroids is not going to be as accurate a way to determine the likelihood of a cancer being present.

Similarly, African-American women have higher rates of some of those more aggressive endometrial cancer subtypes, so like the serous endometrial cancer, carcinosarcomas, and those types of endometrial cancers often do not have thicker lining on the ultrasound, and they could be missed if a biopsy is not obtained. So, that is one of the ways, among many others, that African-American women have been shown not to receive guideline-concordant care in this country. And then there’s obviously the issue of access to the proper care.

A lot of African-American women may live in more rural areas or almost healthcare deserts around the country where they might not have easy access to a gynecological oncologist or a specialist, and certainly they’re not going to have access to clinical trials. So, that is another way in which African-American women are really not receiving the same care as white women in this country.

Katherine Banwell:

Dr. Roque, if a patient is feeling like they’re not getting the best care, what would you recommend?

Dr. Dario Roque:

Yeah, absolutely. I mean, I do think, unfortunately, there is some self-advocacy that all patients should have, not because the provider doesn’t always have their best interest at heart, but sometimes a provider might not have a lot of experience with treating endometrial cancer or managing endometrial cancer. So, at any point, you’re always able to seek a second opinion or even a third opinion. And the idea is, you want at least some level of similarity in terms of the opinions.

There might be some minor disagreements, like in patients who have more advanced disease, whether we do surgery first versus chemo first, but the message should be very consistent in that setting that chemo and/or surgery are indicated.

I think the area where I would strongly recommend a second opinion is if you’re not happy with the answer you’re getting and certainly in the setting of abnormal uterine bleeding. For example, if you’re postmenopausal and you’re having any amount of abnormal bleeding, whether it’s like a spot, a period, anything that is not normal for you, you need to have an endometrial biopsy. If the provider that you’re seeing is saying the ultrasound is enough, that is a situation where I would very strongly recommend either seeking a second opinion or requesting a biopsy of some sort.

There are some exceptions to the rule, but in general, an endometrial biopsy is a fairly straightforward procedure. It’s a little bit uncomfortable, but it is the standard way to determine if there’s endometrial cancer or even endometrial pre-cancer.