Iris Romero, MD, MS, Associate Professor at Department of Obstetrics and Gynecology, Dean for Diversity and Inclusion, Specializing in Hereditary Breast and Ovarian Cancer, at the University of Chicago Medicine, talks about a Stand Up To Cancer funded clinical trial, “Women Choosing Surgical Prevention,” which can further compare the prevention options for patients at high genetic risk of developing cervical cancer.
Interview conducted by Ivanhoe Broadcast News in November 2017.
Most women when they hear ovarian cancer become very frightened because it’s known as the silent killer. Can you tell me what’s changed over the years? That’s still the case unfortunately?
Dr. Romero: Yes, unfortunately, we really haven’t made a lot of progress in being able to identify ovarian cancer early. Unlike other cancers that have a good test that will find the cancer early, the tests just really haven’t worked out for ovarian cancer and there doesn’t seem to be any signal in the near future that that’s going to change.
Can you tell me a little bit about WISP?
Dr. Romero: Yes. WISP is a stand up to cancer funded clinical trial specifically for individuals who carry a genetic mutation that elevates their risk of getting ovarian cancer.
That’s the BRCA gene?
Dr. Romero: Yes. The most common example is BRCA1 or BRCA 2, but there are actually nine other genes that also elevate the risks of ovarian cancer. These are usually identified in families who have a strong history of breast or ovarian cancer. WISP is a stand up to cancer funded clinical trial; it stands for “Women Choosing surgIcal Prevention”. It’s a trial meant for people who are at quite elevated risk for ovarian cancer because they’ve been identified to carry a mutation in a gene. For example BRCA but also others that increase the risk of ovarian cancer. Now information from the lab that started coming out a few years ago suggested that ovarian cancer actually starts in the fallopian tube, so some people hypothesize that maybe as one step toward preventing ovarian cancer women could choose to just take out their fallopian tubes at first and then later on at a slightly older age come back and get their ovaries out.
Now, what’s the benefit of taking these surgical preventions one step at a time?
Dr. Romero: The standard practice for preventing ovarian cancer in high-risk women is to take out both the tubes and the ovaries at same time, which has been proven to prevent ovarian cancer. The problem is when you do that in, for example, a thirty-five-year-old she goes into menopause immediately on the day of surgery and there can be long-term quality of life challenges with going into menopause so young. So in the WISP trial where a patient chooses to take a two-step procedure, she may delay the onset of menopause by several years until she comes back to get her ovaries out. That is the advantage and why some people consider that arm.
If you could just give just give me an idea of the scope of the trial. How many women researchers hope to involve and what you would be looking at?
Dr. Romero: The trial is open at multiple sites across the country. The goal was to enroll three hundred women, and to date forty eight women have been enrolled with twenty seven of them choosing the two-step procedure of having their tubes removed and their ovaries removed at a later date. The goal of the trial is to understand, comparing the women who choose to do their tubes in one procedure and their ovaries at a later procedure versus women who decide to do both the tubes and ovaries in the traditional approach. To look at those two groups and follow them over time to understand what affects there are on menopause, sexual function, and all that data. This will be gathered online; the patients just have an account, and they are reminded to login, fill out a short ten or fifteen minute survey every six months after their surgery and then we’ll be really able to understand what is the quality of life between these two groups.
What do researchers hope, what could be the implications for this study?
Dr. Romero: The implications for the WISP study in particular will be to gain a clear understanding of if there are benefits to menopause symptoms and sexual functions if women delay the removal of the ovaries. The long game, what researchers really need to know is; does removing the fallopian tubes really sufficiently protect against ovarian cancer? Is this going to be a method that we’re going to be able to offer patients confidently in the future, that study will be a different study and quite a larger and long-term study to really scientifically answer that question.
Are genetic components one of the things that makes identifying these cancers so difficult or tracking these cancers so difficult, and if so why?
Dr. Romero: The difficulty in ovarian cancer is being able to prevent it, and specifically we can’t prevent it because we don’t have a screening test to identify it. It’s really still quite rare although quite deadly and the symptoms are very nebulous. The one piece of the pie where we really truly could prevent ovarian cancer is by being able to identify people in the population who carry one of these genes that significantly increase the risk of ovarian cancer. That won’t be most people with ovarian cancer, but if we’re looking for any place in the landscape where we can really make an impact on prevention it’s by identifying these high-risk patients.
We had mentioned magenta before tell me a little bit about that?
Dr. Romero: One of the main ways a patient would find out if they carry one of these genes that increase the risk of ovarian cancer is to think critically about their family and their family history. Specifically, we’re looking for any family members that had ovarian cancer, multiple family members with breast or ovarian cancer, young breast cancers and male breast cancers. If that describes someone’s family then they certainly should see a doctor to talk about genetic testing which is a simple blood test to understand if one of these genes is running through the family. The problem is doctors with expertise in that area are spread pretty thin in the country and specifically these types of doctors’ work with a specialist called a genetic counselor. But genetic counselors are also not very accessible, especially in more rural areas of the country. So magenta is another stand up to cancer funded trial which is trying to move this testing outside of the doctor’s office and directly to the patient when the resource isn’t available to the patient. It’s all online; the patient either goes on the website or calls a phone number, does an intake and if they are deemed to be at elevated risk where it would make sense to do genetic testing then it’s all done through the mail and they’re sent a kit to their home to collect saliva, and they’ll have counseling with the genetic counselor on the phone or online to really understand the testing.
Why is that component important, the counseling?
Dr. Romero: This is pretty complicated stuff and what I tell my patients is it’s nothing akin to, for example, getting your cholesterol checked. There’s not a yes/no there’s a lot of complicated biology and interpretation in between it. It’s one reason I highly discourage patients from, just for example, going online and just having a kit sent to their house and doing this without a health care provider. That’s really important not only for the patients but for the doctors taking care of the patients to really understand how to interpret these sometimes complex results.
Are the survival rates getting any better over the last few years or are we about the same and what is that?
Dr. Romero: I’m going to not say a number because it shifts around and scares patients although researchers like myself and my colleagues have worked tirelessly in the lab to really try and understand the biology of ovarian cancer and identify new treatments, the survival really hasn’t kept pace with what you would see in other cancer, for example, breast cancer. There’s hope but not to the magnitude that we’re seeing in other cancers. And I think that is really because of the biology of ovarian cancer is still quite unclear.
Does that compel you and your colleagues to work even harder?
Dr. Romero: Yes, seeing these patients pass away really in the prime of their life and the cascading devastation in their family motivates me and my friends to come every day and every weekend and sit in the lab and collaborate with the patients to really try to understand how we’re going to really change the course of ovarian cancer.
Are there any steps or what steps should a woman take to prevent these reproductive cancers?
Dr. Romero: The most critical step a woman can take is to have a long standing and trusting relationship with her gynecologist. And through that relationship the patient will be able to make sure that they stay on time with the recommended screening tests and be very aware of the warning signs of cancer and also take advantage of some of the preventive options that are available. One of the best examples in our lifetime of cancer prevention is the HPV vaccine which has really made a significant impact on the rate of cervical cancer in the United States. Every woman should consider getting a HPV vaccine if she’s less than twenty six and all mothers’ should consider having both their sons and daughters vaccinated against HPV. This will seriously decrease the risk of getting cervical cancer.
Pap smears still important?
Dr. Romero: Pap smears are still important but now that we understand human papilloma virus or HPV we’re really able to find tune the recommendations about how often to do pap smears. That combined with the HPV vaccine are really making meaningful strides for cervical cancer. The most common cancer in gynecologic cancer in women is uterus cancer and the best means to prevention is maintaining a healthy weight. Obesity is a significant risk factor for uterine cancer. And then number two, is understanding that if a woman has bleeding after menopause that’s a very serious side effect and she needs to see a gynecologist right away to be evaluated because it could be a sign of pre-cancer or cancer of the uterus. The third really meaningful pillar for cancer prevention for women is knowing your family history and talking to your healthcare provider about it. This is particularly important for breast cancer and ovarian cancer. Families with young breast cancer, women with young breast cancer in the family, or any family with ovarian cancer should make sure to talk to her primary care doctor or gynecologist about that. Because there could be a genetic cause in the family, and that’s easily tested for via blood test.
Are there steps that a woman should take to preserve fertility if she is diagnosed with cancer?
Dr. Romero: It’s very important for a young woman to consider her fertility during her new cancer diagnosis and this is a very stressful time for families but it’s perfectly reasonable to have a conversation with the cancer doctor about what fertility options are going to be available while still simultaneously treating the cancer at hand. The most effective way to facilitate these conversations is to be in an advanced care center where there’s a multidisciplinary team of both cancer doctors and gynecologists who know how to work with patients and preserve their fertility if possible while still treating their cancer.
Is it a matter of egg preservation in some cases?
Dr. Romero: Sometimes it’s egg preservation, sometimes it’s medication that they give during the cancer treatment to try to protect the fertility from the cancer treatments. There’s actually a lot of more options available for women now than there was in the past. But it would be critical to be in a center that has that expertise so that any options for future fertility remain on the table after the cancer.
Is there a third or are those the two that most women will talk about with their doctor?
Dr. Romero: They could if there were time, make embryos and do it like a whole IVF procedure but there’s often not time for that. But it’s also worth mentioning that it’s an important conversation for men to have as well. Women often make their families with men and if the male partner has a young cancer, his fertility could be threatened as well. The couple can work with a fertility specialist to understand the options that are available for the male partner so that later on he could father a child and still have his cancer treatment.
Is it something that doctors discuss when there’s a young breast cancer diagnosis?
Dr. Romero: I think that doctors try to but sometimes there’s the urgency of the new diagnosis and the concern for the immediate threat, that’s why having fertility specialists as part of the team because they’re not charged with curing the cancer right in front of them. They’re charged with thinking about this person’s family options when they survive this cancer ten, fifteen years down the road. We didn’t touch on one thing which is really important, what is the downside of only taking out your tubes. It’s really important.
You’re right, is there a higher risk then of cancer?
Dr. Romero: They can get cancer in between.
Are there downsides to being less aggressive about that surgical treatment?
Dr. Romero: Yes, this is very important for patients to understand that the clinical recommendation, the main stream approach is for patients at high risk of ovarian cancer to take out both their tubes and ovaries at the same time. We know that works, we’ve been doing that for years. Now, to understand if in the future a two-step procedure where a person takes out their tubes first and later comes back and takes out their ovaries, it’s going to require a study like WISP. But it’s really important that patients who choose that two-step procedure understand the risks that they are taking. Number one, they’re going to have two surgeries so it’s important that the patient be a good surgical candidate because instead of going to the operating room once, they’re going to go twice which technically doubles the chances of them having a complication. For many women the risk a complication is already so low that it’s very reasonable to consider doing the two-step procedure. Number two, and probably the most important is we don’t know yet whether just taking out the fallopian tubes will prevent ovarian cancer. There is the smallest risk that in that time that the patient is waiting to come back and get their ovaries out they develop ovarian cancer, so during the interval of time while they’re waiting to get their ovaries out it’s important that you work closely with their doctor on their WISP trial and they will have screening tests though out that time to identify any concerns.
You said it’s a small risk, do you know what the percentage is?
Dr. Romero: It would depend on the type of mutation and the family history. The doctor would work with the patient so that they individually understand what level of risk they’re undertaking.
But they’re getting regular screening too?
Dr. Romero: They are getting regular screening during that interval of time, until they come back to get their ovaries removed. But we have to also remember that ovarian cancer screening doesn’t work very well.
Is there anything I didn’t ask you that you want to make sure the viewers know?
Dr. Romero: I think one of my final spots would just be more of a thank you to the patients. This research and the all the research that we do comes out of trying to help this devastating cancer. And WISP in particular was a very patient-driven initiative that stand up to cancer got behind. And because of patient’s advocating for themselves and really motivated by the question of not how am I going to handle my genetic mutation but what’s it going to look like for my daughters and my granddaughters, the patients have really gotten behind the trial and are volunteering to participate and we couldn’t do it without them.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
If you would like more information, please contact:
Kathryn Carlton
Kathryn.carlton@uchospitals.edu
Geri Cooper
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