Can We Prevent Ovarian Cancer?

Dr. Diane Reidy-Lagunes:

Every year, 295,000 women are diagnosed around the world with ovarian cancer, and sadly, only half will survive beyond five years. On top of all of that, there are still no effective screening tools. But many women don't know that we actually can prevent ovarian cancer. And I'm talking one study that showed 100% prevention of the most common and deadly form of ovarian cancer. It's true, it's available, and we're going to talk about it today.

Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center, and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcast.

We've heard all the stories. She noticed a lump in her stomach, months passed until she finally saw someone, only to find out she had cancer covering all her organs. Ovarian cancer. This happens to women of all ages, but now a simple procedure which takes minutes to perform, can save a woman's life and prevent ovarian cancer completely. Today I'm joined by two guests who have made it their mission to get this important word out. Both are GYN oncologic surgeons and both have a tremendous passion to improve the lives of women touched by ovarian cancer. Their focus: prevention and hope. Dr. Kara Long, my friend and colleague here at MSK, and Dr. Rebecca Stone, our valued partner at Johns Hopkins University, welcome to the show. We are so honored to have you both here with us.

Dr. Rebecca Stone:

Wonderful. Thank you so much for having us.

Dr. Kara Long-Roche:

Diane, thank you so much for having us. We're so excited to be here.

Dr. Diane Reidy-Lagunes:

Kara, I'd like to start with you. Ovarian cancer: can you share with us why it's so hard to diagnose and treat?

Dr. Kara Long-Roche:

Ovarian cancer is something that impacts thousands of women a year in the United States, as you mentioned. And the most common form of ovarian cancer starts in the end of the fallopian tube. And because the end of the fallopian tube is open in the abdomen, this cancer spreads before anyone knows that it's there. There's no test that can find it before it spreads, and patients don't have symptoms until it is in its more advanced stages. So when Becky and I meet our patients, they have disease that's widely advanced and has been missed by every available medical test.

Dr. Rebecca Stone:

I think one of the most interesting things about ovarian cancer is that it's a really unusual solid cancer because, unlike other solid cancers where sometimes we can pick up signs of it in the blood with like a blood test, ovarian cancer doesn't really have a phase when it's in the blood, at least that we are able to detect. And so we haven't been able to come up with a screening test for it, and so we have to turn to the next best option, which might be prevention. And so in women who are average-risk, not known to have a genetic risk for ovarian cancer, you could consider having your fallopian tubes removed as a preventative strategy. So salpingectomy is the medical procedure for removing the fallopian tubes. And Kara will tell you, we've been doing this for some time. This has become fairly routine in GYN.

Dr. Kara Long-Roche:

Yes, when we made this incredible discovery that this most common and deadly form of ovarian cancer starts in the tubes, we started to realize that we could take advantage of these opportunities to remove the tubes when it was appropriate. And one of the most appropriate places to do that is in the gynecologic operating rooms. So if a patient is having their uterus removed – a hysterectomy – decades ago, we used to leave the tubes behind often. And so now we took advantage of that opportunity – the patient's having a hysterectomy – to get the fallopian tubes out. Another opportunity to get the fallopian tubes out and offer this preventative procedure is when someone wants permanent birth control. It used to be that their tubes were tied. Now we take them out. And so one thing that Becky and I are focusing our research on is how can we get this opportunity to expand beyond those situations? So through an organization called Breakthrough Cancer, we have this amazing opportunity to collaborate with some of the best institutions in the country. So Memorial Sloan Kettering, Johns Hopkins, MD Anderson, Dana Farber, and MIT have all partnered together through Breakthrough Cancer to tackle some of these hardest questions. And this project – bringing opportunistic salpingectomy to more people – is one of the tasks we've been given.

Dr. Rebecca Stone:

The NIH has funded health research in this country for decades, and the amount of funding that there's available is constantly decreasing. And the amount of funding that's available for reproductive and sexual health is actually quite small. And so the fact that people are interested in funding this work outside of the NIH, it makes teams like Breakthrough Cancer all the more important.

Dr. Diane Reidy-Lagunes:

That's the type of collaboration that leads to cure.

Dr. Kara Long-Roche:

Yeah, and I think just the beauty of bringing together just some of the best institutions in the country to work together on this is really going to be the thing that makes us succeed.

Dr. Diane Reidy-Lagunes:

Kara, if it's okay, you had shared that your mom had ovarian cancer 18 years ago, and years after her own diagnosis, you all learned that she did carry a genetic mutation. And now ironically, you're caring for patients with the same disease that your mom had had. Can you share with us what that was like when you learned of her diagnosis, and in particular the genetic mutation?

Dr. Kara Long-Roche:

Yeah. I was a fourth-year medical student at the time, 18 years ago, and I was actually doing a special rotation in gynecologic oncology because I had already decided that that's what I wanted to do with my life. And just to add it: my mom is a gynecologic nurse practitioner, and she had her diagnosis missed by several doctors because it's a hard diagnosis to make sometimes. And she sent some lab work from her own office that confirmed that her symptoms were due to something very serious. And she had advanced stage three C, high-grade serous ovarian cancer. And our family is so grateful that she is actually one of the success stories and is alive and well 18 years later and a fierce advocate for this disease. But along the way, we had the great opportunity to have genetic testing and found to have a genetic mutation that was almost certainly the cause of her cancer. And as someone who was already treating the disease and taking care of women at high-risk, I of course found out that I also have this mutation. And so I viewed it as the most amazing opportunity, right? And we're talking about opportunistic salpingectomy, but I had the opportunity to take matters into my own hands and undergo preventative surgery at MSK with my MSK family, to make sure that I stay healthy too. I think that working on this project with my dear friend Becky is just kind of all meant to be.

Dr. Diane Reidy-Lagunes:
Amen. I believe in no coincidences in life, and that is just such an absolutely remarkable story. Thank you for sharing. And so do we have data or any study that actually showed that if you remove the fallopian tubes, you can in fact prevent the cancer from coming back?

Dr. Kara Long-Roche:

Yeah, so there's a lot of population-based studies that showed that patients who had even one fallopian tube in some cases, that their risk of ovarian cancer went down. There was a study most recently published by our friends and colleagues in Canada where they have adopted removing the fallopian tubes always at the time of hysterectomy and always when someone wanted to be sterilized, even longer before we started doing it in the United States. And in the group of patients that had their fallopian tubes removed, they expected, based on what we know about this disease, to see a certain number of these most common type of ovarian cancers, and they saw 0 in the 26,000 patients who had their fallopian tubes removed. So it's the most exciting piece of information for us to see that there's real hope for this.

Dr. Diane Reidy-Lagunes:

Absolutely. Removing your tubes is an effective means of birth control, correct? And certainly an effective way to take control of your own body?

Dr. Kara Long-Roche:

It's very important for all patients with fallopian tubes to understand their options when it comes to contraception and their reproductive health. And it is true that if someone has completed their family and does not wish to become pregnant, that removal of the fallopian tubes is exceptional permanent birth control. Interestingly, patients can still be pregnant and have children after their fallopian tubes are removed, but they would require in vitro fertilization or IVF to become pregnant.

Dr. Diane Reidy-Lagunes:

So Becky, for a woman who has not gone through menopause, removing her ovaries has the potential of a sudden and severe onset of menopausal symptoms, which is no small or trivial thing. Will there be hormonal changes when the fallopian tubes are removed?

Dr. Rebecca Stone:

That's a great question. You know, the ovary is an endocrine organ and it makes hormones probably much beyond menopause. But the fallopian tube, after a woman is done having children, doesn't have any form or function. It doesn't make hormones. I can't think of a time in science in medicine when we've had had the opportunity to reduce the risk of, or even prevent, a lethal cancer by doing a simple surgery to remove something that is small and has no form or function once we pass a certain point in our lives.

Dr. Kara Long-Roche:

We know that this should be done in the gynecological ORs. That's easy. But there are so many other abdominal operations that women undergo every day in this country – removal of the gallbladder or hernia repairs or colon procedures or bladder procedures – there's just hundreds of thousands of operations done on the abdomen. And what Becky and I want to know is, can we harness some of that power to offer this opportunity to more people?

Dr. Diane Reidy-Lagunes:

Absolutely. Let's hear from Ashley, who is considering this surgery.

Ashley:

My name is Ashley and I'm 36 years old. I learned of the option to have my fallopian tubes removed about five years ago. My mother had the history of ovarian and breast cancer. She was diagnosed with ovarian cancer in 2012, followed by the breast cancer and 2014. She actually, unfortunately, has been re-diagnosed about last spring. So this subject actually has been weighing pretty heavily on my mind again. Upon switching to a new doctor, he actually told me about this option and that it was a way to decrease my cancer risk as well as provide me with the sterilization that I had been looking for. I've done a lot of research on the procedure and I feel 100% confident that this is the right decision for me. My only questions going into the surgery is how my body might react to being off of oral contraceptives for the first time in over 20 years, how my body might adjust to that, or what some of my side effects might be of that. But I know everyone's response to that is a little bit different, and I am very excited with the thought of coming off those contraceptives after so long.

Dr. Diane Reidy-Lagunes:

So Becky, what about her family history here? I mean, you talked about how it probably does originate there, but for someone with a strong family history, is this the right procedure?

Dr. Rebecca Stone:

For women who are high-risk due to a genetic mutation, the standard of care is still to remove the tubes and ovaries, not just the tubes. A lot of times women will test negative for a germline mutation with genetic testing – you know, the mom or sister daughter who has ovarian cancer – but it always does make you wonder, is there just something we can't test for in genetic testing yet? And just that family history alone should make us do everything we can to reduce risk. And so a lot of them are interested in undergoing a procedure, especially if they're interested in permanent birth control, to have their fallopian tubes removed because it is empowering to them – you know, they've just been with their mom who's been through harrowing surgery, chemo, sometimes who's passed away from ovarian cancer – to be able to sort of take back some of what that has taken from them.

Dr. Diane Reidy-Lagunes:

What about the oral contraceptive? Is there some sort of withdrawal that could happen if a woman decided to stop taking the pill after this procedure?

Dr. Kara Long-Roche:

Certainly going from being on oral contraceptives to either being off or another form of birth control, there will be an adjustment period. It's important for women to know that even if they have their tubes out, they may choose to stay on oral contraceptive pills for other benefits – you know, control of the menstrual cycle or having lighter periods – so I would say that the decision to stay on or go off oral contraceptive pills is very individual. And you can talk to your doctor about that and decide, even if you do want permanent sterilization, is there another reason that you might want to stay on or go off the pill?

Dr. Diane Reidy-Lagunes:

Yeah. I think again, it's such a highly effective way to make sure that you are controlling your own body and making your own decisions, with this added benefit of potentially preventing a cancer. It's nothing short of miraculous. So I want to close with two important questions, so listeners out there, pay attention. Becky, first, what are the warning signs of ovarian cancer?

Dr. Rebecca Stone:

As Kara pointed out, they can be very quiet. So symptoms that many of us have probably throughout the week: some bloating, sometimes some urinary frequency, sometimes just feeling full after eating a small amount of food, unexplained weight loss, fatigue. Because they are so common, it's hard to tell women what to look out for. And so I tell people that if you're having a symptom like that every other day, or something that's keeping you up at night that you're worrying about, or that it's affecting things you might do – like you might not go to a movie with a friend because you feel like you're going to the bathroom all the time – then you've gotta see a doctor.

Dr. Diane Reidy-Lagunes:

And Kara, what should a patient ask their doctor if they're considering this surgery?

Dr. Kara Long-Roche:

First of all, I think that any patient who has any family history of cancer at all, but especially of ovarian cancer or family members with breast cancer at a young age or multiple family members, you have to ask your doctor about genetic testing. It is life-saving. I think patients need to be persistent about any symptoms they're having. So if they're having a symptom and they feel like they haven't gotten an answer and it's continuing to bother them or continuing to get worse, we do need to have patients advocating for continued investigation into these things. And then about the surgery, I think any patient having a gynecologic surgery who has completed having children, ask about this. Say, "Hey, I've completed my family and you're going to be operating in my pelvis. I've heard that we should think about removing the fallopian tubes." I think there is good data to support that that is absolutely appropriate right now. And maybe in the future when patients are having any surgery, they can ask about it. We're not quite there yet, but hopefully soon we will be.

Dr. Diane Reidy-Lagunes:

Let's close out by discussing some common myths. True or false: ultrasound can screen for ovarian cancer.

Dr. Kara Long-Roche:

False.

Dr. Rebecca Stone:

False.

Dr. Kara Long-Roche:

And it does not work to find it when it's early. Only when it's probably advanced.

Dr. Diane Reidy-Lagunes:

Right. True or false: Becky, CA-125 is a reliable test for ovarian cancer.

Dr. Rebecca Stone:

That's false. It's really a marker of inflammation in the abdomen. So anything that causes inflammation can make a CA-125 go up. And it really should be largely used in women who are postmenopausal, meaning have gone through menopause, because it can vary quite substantially with where a menstruating woman is in their menstrual cycle.

Dr. Diane Reidy-Lagunes:

True or false: Talcum powder can cause ovarian cancer, Kara.

Dr. Kara Long-Roche:

False. Talcum powder won't cause ovarian cancer. There are some studies that have shown some association between talc and cancer. I will say most products don't have talc in them anymore, but we don't think people should panic if they used talcum powder when they were young.

Dr. Diane Reidy-Lagunes:

And a pap smear can detect ovarian cancer. Becky, true or false?

Dr. Rebecca Stone:

That is my favorite myth. A pap smear is not a screening test for ovarian cancer, at least as used in its current form. It's a screening test for cervical cancer, and I think that that is one of the biggest myths that's out there in terms of reproductive health and reproductive tests for women.

Dr. Diane Reidy-Lagunes:

And lastly, I just want to reiterate that, you know, certainly if you have a strong family history, you want to make sure that you are going to the right folks to decide if you need to be tested. But anyone, even without a family history, can still get ovarian cancer. So we are advocating for this even in a very healthy patient who's done everything right in life, cause this truly can be preventative.

Dr. Kara Long-Roche:

Yeah. We know that about 80% of ovarian cancers will actually happen in patients who have no identifiable genetic risk, who have no family history. So most of our patients actually would have not been identified as high-risk.

Dr. Rebecca Stone:

Yeah, I think a lot of people have asked, how many lives might one save? Even if you just offered it to all women and they took you up on it at the time of a hysterectomy or in lieu of a tubal ligation, what might that mean? And there are a couple of really smart people that have done some modeling around this, and their projection is something like 2000 lives per year just in our country, just by doing it at the time of a hysterectomy or in lieu of a tubal ligation. And when you do the math on that, it's astounding. And even if you want to look at cost savings, it's something like half a billion healthcare dollars. The projections are just amazing.

Dr. Kara Long-Roche:

That's 2000 patients who can avoid hours of traumatic surgery and months of chemotherapy and families that don't lose loved ones, so it's really very impactful.

Dr. Diane Reidy-Lagunes:

Well we're going to shout it from the mountaintops, and we cannot thank you both enough for all that you're doing to help to save the lives of so many women.

Dr. Kara Long-Roche:

Thank you so much for having us.

Dr. Rebecca Stone:

Thank you so much.

Dr. Diane Reidy-Lagunes:

Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information or to send us any questions you have, please visit us at mskcc.org/podcast. If you like this episode, do us a favor and subscribe so you'll be notified of new episodes. Help others find this helpful resource by rating and reviewing this show on Apple Podcasts, Spotify, or wherever you get your podcasts. Any products mentioned on this show are not official endorsements by Memorial Sloan Kettering. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.