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AJMCtv® Interviews, July 2018

Produced by Samantha DiGrande and Jaime Rosenberg
AJMC®TV interviews let you catch up on what’s new and important about changes in healthcare, with insights from key decision makers—from the clinician, to the health plan leader, to the regulator. When every minute in your day matters, AJMC®TV interviews keep you informed. Access the video clips at

Ambassador Nancy G. Brinker, founder and chair of Global Strategy, Susan G. Komen

When you started Susan G. Komen, there was a lot of stigma surrounding the subject of breast cancer. How did you bring the conversation about breast cancer into the open?

Well, we really brought it out into the open because it was there, it was growing. People just didn’t have the place to talk about it or share their feelings or share their insights or survival or their treatment—or their lack of survival. It was really waiting to happen. Because I had lost my only sister to the disease in 1980 and she asked me, I promised her that I would help cure breast cancer.

So, it’s been a long ride, a long time. It’s been almost 40 years of my life—she was diagnosed in 1978—and I realized that we had to do something, and it was going to require a movement. It wasn’t just going to be a one-[time] fundraiser, it was a movement. And of course, this pre-dated computers and cellphones and fax machines and everything else. We really only had telephones and each other to work with. 

So, we named it Susan G. Komen in her honor, her memory, and set about working for many, many years. We’ve managed to bring up the awareness, the sharing, and we’ve created a large community—a worldwide community—focused on breast cancer.

What do you see as the future of the Susan G. Komen Foundation?

What I think is that the organization, every organization goes through major changes and rebuilding and new ideas and innovation. It’s time for major innovation.

We have such strength in our affiliate communities, who are really people on the ground that have learned so much. It’s not so much what we do, it’s how we do it that’s going to be very important.

People are very sensitive to high overheads, they’re very sensitive to any- thing spent. They want to see money that they give go directly to a mission. So we’re going to try very hard to make sure that we have collaborations with other people already doing the same thing, that we do things in a way—as we’ve always tried to do—as cost-effective as possible. Events become very ex- pensive to do, so we have to figure out other ways [to use] technology to raise money and make sure that we connect with people.

[We also need to] get people of wealth in the country to understand that it’s as important to fund a program as it is a building. In fact, sometimes the program goes farther to train people, to bring people in the system. So those are the sorts of things we’ll work on.

John Schorge, MD, associate editor of The Green Journal and gynecologic oncologist at Tufts Medical Center

What has your research shown about different methods to prevent ovarian cancer?

[My] presentation [was] about ovary cancer and the current updates. It is the case that ovary cancer happens in about 1 [in] 70 women in their lifetime. [There are] people that are at higher genetic risk for that, but really, it’s been a disappointing number of decades trying to identify a screening test. So part of the presentation is just kind of presenting the data [that are] out there, showing that it’s not all that helpful.

There are some methods of preventing ovarian cancer, such as removal of the ovary. It’s [known as] prophylactic surgery, [and it’s meant] to reduce the risk. However, that comes with menopausal, early menopause, and other health consequences. What has been more recently shown is that many of these “ovarian cancers” actually start in the tube, and the tube has no function other than allowing pregnancy.

So, what has tilted in the last couple of years—and the ACOG [American College of Obstetrics and Gynecology] practice bulletins sort of magnify—[is] the recommendation to remove the tube at the time of GYN surgery or instead of tubal ligation. We think that that is one of the more effective ways, and easy ways, of decreasing ovarian cancer in the United States.

What were the findings of your study that investigated the delivery of neoadjuvant chemotherapy to women with advanced ovarian cancer?

One of the conundrums, and controversies, in the field is people [who] present with ovarian cancer. Two-thirds of the time it’s fairly advanced. Whether to start with surgery first or chemotherapy first has been the dilemma. Historically, people have started with surgery first, and yet over the last decade or so, there’s been a lot more evidence that starting with chemotherapy— such as neoadjuvant chemotherapy, which means chemo first—seems to work out just as well in the long run in many cases.

Part of our work was looking at that trend and then determining that [to be] an interval operation, which means halfway through the chemotherapy. If you’re able to do a minimally invasive operation, like a standard laparoscopy, people have similar outcomes to open surgery and a lot fewer side effects and a lot less complication risk.

In your retrospective analysis, how were palliative care services utilized in ovarian cancer and was the utilization in line with national guidelines?

Yes, we did look at palliative care practices specifically for ovarian cancer. It is a relevant topic in that field in that even though most ovarian cancer patients will go into remission, 80% to 90% will relapse. And when a woman has relapsed, it is at some point a palliative care discussion. 

Yet, the logistics of care in the country means that many people never hear the word “hospice.” If they do, it’s at the very end—like the last days or hours of their life—and yet there’s a tremendous amount of expense that goes into the last 6 or 12 months on a fairly predictable end result, specifically for ovarian cancer.

So, what we were trying to do is just identify where the deficiencies were so that more attention could be brought to that and I think that more people would be thinking about that earlier.

What sort of disparities did your research uncover about the receipt of care for high-grade endometrial cancer?

High-grade endometrial cancer is sort of the atypical version of endometrial cancer. Endometrial cancer has doubled in incidence in the United States in the last 20 years. The reason for that is the obesity epidemic, by and large, but most of those people are cured. It’s the people with the high-grade, or so-called type 2, endometrial cancers [who] require something other than surgery and have a much higher relapse rate. 

So, even though it’s 5% of people being diagnosed, it accounts for more than half of people that die from endometrial cancer. It seems to be shifted in the minority and nonclassic populations.

For example, black women are more at risk for fibroids. They’re also more at risk for some of these type 2 or high-grade endometrial cancers. So, it’s looking at the different health disparities, and you would think that if there [are]

100 people with the same diagnosis that they would be treated the same way, [patients with] one of these more aggressive types of tumors. But that’s not the case. And so, there are certain ethnic groups or race groups that tend to be undertreated for some reason or another.

Sometimes it’s related to their insurance status, sometimes it’s related to different philosophy, but that’s what we were trying to drill down into.

Jamie Bakkum-Gamez, MD, associate professor of obstetrics and gynecology and gynecologic oncologist at Mayo Clinic

Why is genetic counseling so important after a patient is diagnosed with ovarian cancer?

Thank you for asking this question. I think this is really, really important. A lot of patients and providers don’t realize that ovarian cancer has a huge genetic component as far as the causes of it. About 20% of women who are diagnosed with an ovarian cancer actually have a gene mutation that caused it. When I say “gene mutation,” I mean something that they inherited, something that they could potentially pass on to their children or be sharing with a sibling.

Ovarian cancer is one of the most lethal cancers that a woman can be diagnosed with. In fact, 75% of the time it’s diagnosed at an advanced stage. We don’t have a screening test for it, so picking it up early is really by luck or by chance. In women who are diagnosed with advanced stage, the likelihood of them being alive at 5 years is around 60%. Again, that is because this is a highly lethal disease.

Women who are diagnosed with an ovarian cancer should be seen by a genetic counselor. Basically, what will happen when they’re seen by a genetic counselor is that the genetic counselor will go through their family history, personal history, and look for other signs that may indicate a genetic mutation that caused the cancer.

So, [because] ovarian cancer tends to travel with breast cancer, it’s important for women to know that a strong family history of breast and/ or ovarian cancer should prompt genetic counseling. The National Comprehensive Cancer Network [NCCN] basically has guidelines for when women should be referred for genetic counseling. A personal diagnosis of ovarian cancer is all you need to be recommended for genetic counseling.

The Society of Gynecologic Oncology also has a statement supporting the fact that women should be referred for genetic counseling if they have this diagnosis. At Mayo Clinic, in 2015, we looked at our genetic counseling referral rates for women with [an] ovarian cancer diagnosis. It was a quality improvement project, actually, and we defined what our current rate was, and it was 20%. Which really, we weren’t compliant, then, essentially with NCCN guidelines. And so, we implemented a bundled approach that included patient education, order sets. and referral guideline implementation into the electronic medical record for each woman diagnosed with ovarian cancer.

Patient education [was] not just through check lists of risks factors but also education in the form of a short video that they watched in the hospital after their surgery. What we were able to do is we were able to increase our rates of referral from our pre- or historic, referral rate, which by the time we implemented the project, we actually moved the needle a little bit already. We were at 40% referral. But with our quality improvement project, we actually went up to 77% referral rate.

So, we’re continuing to try to refine that because, ideally, we do want to chase 100% because all of these women really should be seen for genetic counseling and offered genetic testing.

What sort of novel approaches did you research to assist in the early detection of endometrial cancer?

One of the projects that I’ve been working on from the research side of things, since I came on staff at Mayo Clinic, is the development of an early detection test for endometrial cancer.

In gynecology, we’ve had huge success when it comes to screening for cervical cancer with the Pap test and Pap + HPV [human papillomavirus], but we do not have a screening test for endometrial cancer. Endometrial cancer is now the most common gynecologic malignancy that we care for in the United States. One in 50 women will develop an endometrial cancer, and when they come in to see me, oftentimes the question that I get asked is, “My Pap smear was normal. How could I have cancer and have a normal Pap smear?”

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