Advocating for Better Outcomes: Ovarian Cancer and You

00:00:00:00 – 00:00:31:01
Unknown
Welcome to the webinar. My name is Shannon Zorrilla. I am the LatinaSHARE Gynecologic Cancer Program manager. All are Bienvenido, ICYMI, Nadia Webb, Shannon, Sylvia, Isabella Directora That program of the cancer ecology course they Latinas share. Thank you so much for joining us all today. This webinar is being provided in Spanish and English. If you would like to listen to the webinar in Spanish, please click the Globe button marked interpretation below.

00:00:31:03 – 00:00:58:00
Unknown
At the bottom of your screen and select Spanish, you will be able to see the presenters. But listen to the webinar in Spanish. Out of the Animals, I will not record that audio spot I listed as the seminar audio web service for you in Espanol. See this as we chat and seminar your web in Espanol. Our Click and Donor Global The Hair Care in La Plata Inférieure de la Pantoja.

00:00:58:06 – 00:01:34:22
Unknown
I hope you select Zona Espanol. Well, that other aloes present that all this battle as we try to disseminate your web in espanol. This program is being put on in partnership between Memorial Sloan Kettering Cancer Center and Share. Before the program begins, I’d like to tell you a bit about this case, Office of Equity and Share. And this case, Office of Equity, was established to address disparities in cancer outcomes based on race, ethnicity, cultural differences, and socioeconomic status.

00:01:35:00 – 00:02:08:03
Unknown
The Office of Health Equity has three core areas of focus patient access, research and training. Learn more at MSK. KCC Board Share is a national nonprofit organization that supports, educates and empowers anyone who has been diagnosed with breast or gynecologic cancers and provides outreach to the general public about signs and symptoms. Because no one should have to face breast, ovarian, uterine, cervical or metastatic breast cancer alone.

00:02:08:05 – 00:02:34:07
Unknown
For more information, please visit our website at Share Cancer Support dot org. All participants will be muted during the presentation. Once the speakers finish presenting will begin the Q&A discussion. Please submit any questions through the Q&A section at the bottom of your screen. Remember that the speakers are unable to give medical information, so please keep your questions general.

00:02:34:09 – 00:03:47:07
Unknown
This webinar is being recorded and will be available on the MSK slash share website soon. Before we get started, we would like to learn a bit more about You are our audience. Please take a moment to answer the three questions.

00:03:47:09 – 00:04:11:10
Unknown
Okay, so I see based on our poll, a lot of the people who are attending our program are patients. We have some caregivers and some health care professionals. Thank you all so much for participating in our polls. So now I’d like to hand it over to our first speaker, Dr. Lu. Dr. Lu. Welcome. And please go ahead and introduce yourself.

00:04:11:12 – 00:04:41:03
Unknown
Hi, everybody. It’s an honor to be here. Thank you so much. My name is Ying Lu. I’m a Chilean medical oncologist, which means I’m a doctor who treats women with gynecological cancers. And I specialize in giving therapies that go all throughout the body in pill form and IV form. And one of my interests is really helping women understand their risk for gynecological cancers and how best to treat them.

00:04:41:03 – 00:05:10:10
Unknown
So I am super excited to be here with everyone today. It is a very educated crowd. It sounded like everyone was really excited about genetic testing and everyone knew what a clinical trial was, which is wonderful. So I’m really happy to share some information about ovarian cancer, as well as how we treat ovarian cancer and the importance of genetic testing, and talk about some of the areas of disparities and how we can work on this.

00:05:10:10 – 00:05:34:11
Unknown
And we have a great program today, and hopefully we’ll have opportunities to interact. So let me just share sorry, let me just share a few quick slides. I just have a few pictures that will hopefully help in our discussion. So I want to just start with the basics and just ask the question of, well, what is ovarian cancer?

00:05:34:11 – 00:06:04:19
Unknown
Because not everyone is aware of what the ovaries are. We know that they’re an important part of our gynecologic whole organ system. And what I tell my patients is to think of an ovary like an egg. And I and I have a pink Easter egg here because that’s my daughter’s favorite color. And just like, you know, regular eggs, our eggs are also an important part of the process of of making children.

00:06:04:21 – 00:06:33:18
Unknown
And that is in general, what the gynecological system is, is for. However, we can have cancers that arise in this system. And when you think about the ovary as an egg, the cancers actually come from the outside of the egg or the shell. And that’s what we’re kind of describing here. The stuff on the inside, the mushy stuff, it’s actually very rare to have a cancer from there.

00:06:34:00 – 00:07:12:04
Unknown
So most of the cancers that we’re talking about come from the outside, and it’s a little confusing because when you look sometimes online or you look at research about ovarian cancer, you see that it’s called not just ovarian cancer, but sometimes fallopian tube or peritoneal cancer. And I tell my patients that this is all the same thing because the lines of the ovaries, which is the egg, connects to the fallopian tubes, which is also present in your peritoneal cavity or your abdominal cavity.

00:07:12:06 – 00:07:37:19
Unknown
And the cancer can grow from any of those areas. So those are all the same things. If you’re hearing those different terms. The other thing I tell my patients is that there are different types of ovarian cancers based on what we see under the microscope. And the most common type is what we call a high grade serous ovarian cancer.

00:07:37:21 – 00:08:02:08
Unknown
And you guys may have heard those words, but there are other types of ovarian cancer, too, that are a little bit more rare. And it kind of depends on on what you see under the microscope and that can determine their behavior. So some of them grow a little bit slower and some of them are a little bit more aggressive depending on the type and what we see under the microscope.

00:08:02:12 – 00:08:32:19
Unknown
And these are some pictures here that reflect reflect that. And it’s something we call histology. All right. So then what puts someone at risk for ovarian cancer and how do we change that risk? How do we look out for ovarian cancer? What are symptoms? These are all really important questions. So the number one thing that puts someone at increased risk for ovarian cancer is actually genetic.

00:08:32:20 – 00:08:59:05
Unknown
About 20 to 25% of patients with ovarian cancer have it because of a genetic reason. Now, what do I mean by that? I mean that they were born with something, a change in their DNA, which is the building blocks of of life, really, that put them at risk for cancer, meaning that they had a higher chance of developing ovarian cancer.

00:08:59:07 – 00:09:21:07
Unknown
And this could happen at a younger age. And this is something that they were not only born with, but that was passed down to them from one of their parents. That’s that’s what we mean by genetic. And also because of that, they’re at risk of passing it down to their children. So it can affect not just the the patients, but their family members as well.

00:09:21:09 – 00:09:47:09
Unknown
And some of these gene changes you might have heard of, things like BRCA1, BRCA2, these are the most common genes that are changed that are associated with ovarian cancer, but there’s other ones as well, and that is by far the most common risk factor. Age is also a risk factor as as we get older and there are things that can decrease your risk.

00:09:47:10 – 00:10:33:23
Unknown
So actually having had pregnancy’s breast feeding and using oral contraceptive pills or birth control has been shown to decrease the risk. Now, unfortunately, we haven’t gotten very good at preventing ovarian cancer, you know, through through testing. And that’s partially because ovarian cancer is really tough to diagnose. The symptoms can be very general. It could be things like feeling tired, having changes in your bowels, maybe feeling a little bit more bloating, maybe having some fluid builds up in your belly and not really knowing why, like gaining weight, things like that.

00:10:34:01 – 00:11:13:20
Unknown
And so many women, unfortunately, aren’t diagnosed. They don’t figure out that they have ovarian cancer until it’s become much more advanced. And we really unfortunately haven’t gotten good at screening for ovarian cancer, meaning using a blood test or an imaging test like an ultrasound or something like that, to try to find ovarian cancer at an earlier stage. For example, for breast cancer, we have things like mammograms that are very effective at detecting breast cancer early when it’s very treatable, very curable and ovarian cancer.

00:11:13:20 – 00:11:47:07
Unknown
We’re still working on that. And for women who are at increased genetic risk for ovarian cancer, there is a way to prevent ovarian cancer, but it’s not through blood tests or or ultrasounds or things like that. It’s it’s through surgery. And it has been shown that surgery to remove the ovaries to remove the fallopian tubes before the age at which the risk of ovarian cancer increases is effective to prevent ovarian cancer.

00:11:47:07 – 00:12:22:08
Unknown
And this here is it is a picture of what that type of surgery looks like. It’s laparoscopic meaning it can be done with very little incision. It’s a small procedure, a quick recovery time. And this is kind of what the ovaries look like under the microscope. So, you know, that is the gold standard for preventing ovarian cancer. But we are working and actually doing research and trying to find other ways, more noninvasive ways through blood tests or other types of tests to to try to prevent ovarian cancer are detected earlier.

00:12:22:13 – 00:12:47:16
Unknown
But right now, the gold standard is still surgery. Now, what happens if we diagnosed ovarian cancer? So most of the time women are diagnosed with ovarian cancer because they they have these symptoms and it gets worse. And eventually there is a biopsy that shows ovarian cancer. There’s a CAT scan that’s, you know, suspicious for ovarian cancer that leads to a biopsy.

00:12:47:16 – 00:13:22:05
Unknown
And oftentimes the the initial treatment is a combination of surgery and chemo therapy. And these are very, very important. In fact, I have pictures of our amazing surgeons here and some of our chemotherapy units. And this is sort of been the traditional treatment is a combination of trying to get rid of as much of the tumor as possible through surgery, which can either happen before chemotherapy or kind of in between in the middle of chemotherapy, what I like to call sandwich style.

00:13:22:07 – 00:14:06:23
Unknown
But the goal of both the surgery and the chemotherapy is to try to get rid of as much of the cancer as possible and put our women into what we call remission, a state where there’s very minimal cancer or no cancer that we can see and kind of try to keep them there. And I think, you know, in the past, these therapies have been successful, but not maybe not as successful as we would have liked, meaning that although we can get our women into remission with surgery and chemotherapy, oftentimes, unfortunately, the after months, two years, the cancer could come back and women may need additional surgery or treatments.

00:14:07:01 – 00:14:36:12
Unknown
So the goal recently has been, well, how can we improve upon our traditional treatments like surgery and chemotherapy? Are there more targeted therapies that we can use? And I and I put this bull’s eye here to to sort of show that, you know, there’s been a lot of research in oncology looking at trying to target our treatments to the specific cancer type and the specific cancer genetics.

00:14:36:14 – 00:14:53:08
Unknown
What I what I tell my patients is, you know, surgery is is very good, but it takes out everything. Chemotherapy is also very good, but it’s like, you know, it’s like when you’re at war, it’s a big bomb. It takes out everything. It’s not selective. Whereas I tell my patients, you know, targeted therapies, they’re like the Navy SEALs.

00:14:53:12 – 00:15:23:00
Unknown
They’re targeted, they’re in for a mission, they’re going for a specific target. And they get in there, they do what they need and they get the job done. So that’s what we’re looking for with targeted therapies. And I think the biggest targeted therapy that’s been successful recently for ovarian cancer is something called a PARP inhibitor, which is a pill that is not chemotherapy, but actually targets specific changes in the DNA of the ovarian cancer tumors.

00:15:23:02 – 00:15:53:22
Unknown
Often times those BRAC mutations that I mentioned before, and it works to damage the DNA in just the tumor cells more selectively and helps to to destroy the tumor cells and keep our women in in remission for longer and hopefully get rid of the cancer. That’s that’s sort of the goal. Now, how does targeted therapy lead to disparities and where are the disparities in ovarian cancer?

00:15:53:22 – 00:16:49:06
Unknown
So, you know, unfortunately, as we’re developing these more advanced and targeted therapies, they rely on knowledge, knowledge of genetics of the patient, genetics of the tumor to pick the right targeted therapy for the right patient, for the right cancer. And where the disparities come into play is in who’s getting genetic testing. Now, the good news is, is that the recommendation from multiple cancer organizations and and you know, most and almost all the doctors that you’ll see is that every woman, everybody with ovarian cancer should have genetic testing of both themselves, meaning their own blood and the tumor for the exact reason of trying to make sure that we have the right therapy, the right targeted

00:16:49:06 – 00:17:17:18
Unknown
therapy for them and for their family, so that they know if there’s something running in the family that’s increasing their risk of ovarian and other cancers so that we can prevent cancers. So that’s sort of the the two reasons why genetic testing is so important in ovarian cancer. So our bar is 100%. It should be 100%. And unfortunately, the studies have shown that we are very short of that bar.

00:17:17:20 – 00:17:48:15
Unknown
A very disappointing study a couple of years ago showed that, you know, in some states it’s it’s only 34%. So less than half of women with ovarian cancer are getting the recommended genetic testing. Thankfully, when we looked at our MSA data and we’ve looked at some other other datasets, it’s a little bit higher. It’s sort of in the 70, 80 or even low 90% range, but it’s not 100% and there’s a lot of variation.

00:17:48:17 – 00:18:17:13
Unknown
So I think we can do better. So what are some of the reasons why people aren’t getting genetic testing? Well, the studies have shown that, you know, genetic testing, there’s a lot of mistrust around genetic testing because it’s just a lot of you know, it’s sometimes hard to understand why we’re doing it, what the process is. People are nervous about their genetic information, you know, being there.

00:18:17:18 – 00:18:43:01
Unknown
They’re they’re not sure what implications that might have. They’re also worried about the cost. Is their insurance going to cover it, which is all you know, these are all valid concerns. And so we’ve you know, the studies have shown that there’s disparities in who gets genetic testing based on their race, their education, their insurance, but actually a good portion of it has to do with their physician.

00:18:43:01 – 00:19:14:23
Unknown
Two studies have shown some bias and who gets recommended genetic testing. And that if if patients have their doctors refer it, they’re much more likely to do it. And that we as physicians need to be better about recommending this for all of our patients and not, you know, not, you know, being biased for whatever reason. So I think these are all things that we could all work on and we’re doing a lot of studies to try to figure out how to make the genetic testing process easier.

00:19:15:01 – 00:19:37:19
Unknown
I think we’re all getting more savvy with technology. And so one of the hopes is that technology will help this process and bring the, you know, empower patients and individuals to do their own testing. So there’s a lot more direct to consumer, direct to patient testing. There’s also more digital ways to do testing that makes it a little bit easier.

00:19:38:00 – 00:20:01:04
Unknown
You know, sometimes what I tell my patients is if we can all order food through apps and get that and can’t we all order our own genetic testing, send in, you know, a sample and get the results? So there’s got to be better ways to do that. And we’re we’re working on that. And we’re also very interested in the patient perspective and all of your views on, well, what is it that makes me does this process make me nervous?

00:20:01:04 – 00:20:28:21
Unknown
What could be better? So, you know, that’s why I’m so glad we’re having events like this today to to talk more about ovarian cancer, the importance of genetic testing and how to work on these disparities. So with that, I will stop and hand it back to the team. Thank you, Dr. Lieu. Now, I’d like to hand it over to our second speaker, Livia.

00:20:28:23 – 00:20:59:19
Unknown
Livia, you can go ahead and introduce yourself. Thank you. I’ll start with with a thought. Even though I walk through the valley of the shadow of death, I will feel no evil for you are with me. Song 23, Verse four. Good afternoon. My name is Lydia Gonzalez and June 2022. After a total hysterectomy, I was diagnosed with stage one ovarian cancer.

00:20:59:21 – 00:21:35:12
Unknown
In my case, I only had a mass growing in my upper right terminal area stemming from my right ovary. I had no discharge, no headaches, no pain nodes, any dizziness or fever. I had as one of the symptoms that Doctor Lou mentioned, bloating a lot of glory. I went about my daily activities. I would go out to Google shopping.

00:21:35:12 – 00:22:10:05
Unknown
I will work out everything was fine. I had no history of general biological cancer in my family, on my father’s side or on my mother’s side. However, the mass continue growing and I had a city scan. I must emphasize the importance to all woman. To listen to your body. You must voice your concerns to your physicians. GYN, obstetrician.

00:22:10:05 – 00:22:57:16
Unknown
And it is crucial even worrying for this. I could have missed my diagnosis as I was explained that ovarian cancer often is silent and was difficult to diagnose with our biopsy or in early stages. I cannot I don’t have the words to to express my appreciation that I had a wonderful medical team of my guardian oncologists, nurses, social workers, to name a few, that brought up to me the importance of the genetic testing to see if I had a genetic mutation.

00:22:57:17 – 00:23:33:09
Unknown
I was explain the importance as this pertaining to my future and my lone children. Had I come positive for the black gene, that meant that my children would have 50% of being possible positive Also for that gene, the genetic counselor I remember her name is Debra. She was so far while explaining the genetic testing and even explaining the bad part of it that I would have been positive for Blocker down the line.

00:23:33:09 – 00:24:10:04
Unknown
I would have probably develop other cancers, including breast cancer column cancer, and she portrayed in such a clinical but at the same time is such a empathetic way. And I thought to myself, let me not overreact, let me wait before I crossed the page so that waiting time of, I believe, three months, what’s like so anxiety provoking. But finally my results came back and thank God I was negative for the boycott.

00:24:10:07 – 00:24:47:13
Unknown
My genetic testing was good and she explained the results very thoroughly. I got all sort of it’ll be point. I am blessed to have the wonderful medical team that I have addressed in my medical management care needs, and I include friends, people from my congregation, this this specialist, a Latina that has to be wonderful with me, woman to woman, and of course, my adorable children, Jose, my beloved first son, my daughter Veronica, today is a paramedic.

00:24:47:15 – 00:25:22:13
Unknown
They were with me doing the whole process, going to the doctor’s appointments, doing the surgeries and doing the challenging process of a chemotherapy. Again, all these support systems have been crucial, but most of all, my faith has kept me going and pushing forward, always forward again. I love my cancer survivors. My patients often share the woman like warriors that are there fighting.

00:25:22:15 – 00:25:56:04
Unknown
And again, the best and most important advice have genetic testing. It is crucial. It is important. It saves lives. Thank you. Thank you so much, Lidia. Now we’re going to move on to our next section. It’s the Q and A, so you can still submit questions in the Q&A section at the bottom of your screen. We will get through all of the submitted questions, but you may not be able to, due to time constraints.

00:25:56:06 – 00:26:26:18
Unknown
And also finally, remember that the Speaker cannot give personal medical advice. So please try to keep your questions General. So our first question for Dr. Lu is how do you test for ovarian cancer? Take Good question. It’s a good question. And Lydia, thank you so much for sharing your story. And unfortunately, your story, just like you said, is so common because, like you said, ovarian cancer is often the silent cancer.

00:26:26:20 – 00:26:57:07
Unknown
This is what I tell my women. I tell them women are amazing. Women’s bodies are amazing. You know, we carry children. We often you know, your body stretches so much, you are your pelvis is able to accommodate that. And that’s the blessing. But the flipside is sometimes cancer can grow in that amazing body without you knowing it. Just because we as women go through so much, we’re used to doing so much, we’re used to pain, we’re used to bloating, we blame it on being tired or not eating right or, you know, all those things.

00:26:57:07 – 00:27:17:20
Unknown
I feel like all the women who come and see me, they’re they’re so busy, you know, just like Lydia, their mothers, they’re working. They have things going on, these aches and pains. They just they keep going. They’re warriors. Just like Lydia said so often, it is very hard to diagnose ovarian cancer and part of that is because there is no good screening yet.

00:27:17:22 – 00:27:39:09
Unknown
We we all know we go for our yearly mammograms. You know, we see our doctor, we do our pap smears. These are ways to detect other cancers, but we don’t have that for ovarian cancer, which is why, you know, webinars like this are very important to to just educate people about what is ovarian cancer, what are the symptoms, why is the genetic testing important?

00:27:39:09 – 00:28:04:14
Unknown
Because for a lot of women, knowing that they’re at inherited risk or genetic risk is a way to say, well, I need to be extra aware. Maybe I need to do extra things like the prevention surgery to not only prevent the ovarian cancer, but just to make sure everything is okay. And fortunately, most women are diagnosed when their symptoms get just too much.

00:28:04:15 – 00:28:35:21
Unknown
And every sometimes that’s when the swelling in the belly gets too much or there’s pain or there’s something that leads you to go to the emergency room. Just like in Lydia’s story, it usually leads to some kind of imaging, whether it’s a CAT scan or something that finds something abnormal, which usually leads to a biopsy or a surgery that then gives the confirmation of the ovarian cancer.

00:28:35:23 – 00:28:55:15
Unknown
And that is, in general, how ovarian cancer is diagnosed. My vision and a lot of people’s vision is that one day we will have a screening test, will have a blood test or something that will say, there’s something atypical here. It’s not ovarian cancer yet, but it’s early. So, you know, let’s keep an eye on it. Let’s do something.

00:28:55:15 – 00:29:29:16
Unknown
Let’s do an intervention to prevent it. That’s the that would be the goal. But we’re not we’re not there yet. Right now, the best way to prevent ovarian cancer is to be aware of it, be educated, just like we all are, and then do the genetic testing, just like Lydia said. And if you are at increased risk, do the recommended surgery to reduce that risk and or enroll in one of our clinical trials where we’re trying to look at other ways outside of the surgery to to prevent ovarian cancer.

00:29:29:16 – 00:29:59:19
Unknown
So that’s kind of where we are right now. Thank you so much, Dr. Lu. We have another question here that says, what are the risk factors for this type of cancer? Absolutely. That’s a great question. I think like I like I said before, genetics genetics. Genetics is the number one risk factor, but also our best opportunity for prevention.

00:29:59:21 – 00:30:31:12
Unknown
So, you know, I try to limit the amount of numbers I throw at people, but I do find this kind of compelling to do. Ovarian cancer as a whole is rare. Breast cancer is much, much more common. The average woman’s lifetime risk of something like breast cancer, you know, from 0 to 100% is 12%. Comparatively, the average woman’s lifetime risk of ovarian cancer is much less.

00:30:31:12 – 00:31:04:14
Unknown
It’s 1 to 2%. So so ten times lower. But if you’re somebody with a BRAC, a mutation like a BRCA1 mutation, so a genetic risk, that 1 to 2% goes up to 40 to 45%, which is much, much, much higher. So that is is the major risk factor. The other smaller risk factors are things like age being being postmenopausal, which is related to age.

00:31:04:16 – 00:31:47:12
Unknown
But by far the biggest factor is genetics. Thank you, Dr. Liu. And then we also have some live questions. One of our life questions is what types of genetic mutations do PARP inhibitors treat? That’s a great question. That’s a great question. So PARP inhibitors work by blocking one of the pathways that fixes DNA. And the way cancer develops is because you’re normal cell, normal parts of your body all of a sudden develop a change in their DNA.

00:31:47:12 – 00:32:20:12
Unknown
And oftentimes this happens because they can’t repair the DNA. So the reason bracket mutations lead to this increased risk of cancer is because BRAC is a very important protein, are important part of the DNA repair machinery. And so when you have a change in that and you’re born with that from birth, your DNA doesn’t repair as well. And so then you’re more at risk for developing cancer.

00:32:20:14 – 00:32:44:15
Unknown
Now, ovarian cancer is in general have a lot of issues repairing their DNA. So so probably the question you’re thinking as well, if the PARP inhibitors make that worse, how does that how does that lead to killing the cell? Well, what happens is the ovarian cancers in general, and especially those with bracket mutations, can’t repair their DNA. So the mutations are accumulating, accumulating, accumulating.

00:32:44:17 – 00:33:23:17
Unknown
And then you throw in the PARP inhibitor and it also makes it harder to repair DNA because there’s different ways that that your cell repairs DNA and bracket takes care of one part and PARP takes care of the other part. So when you have both of them, the mistakes just just build up and all of a sudden you reach a critical point where the cell says, I can’t take it anymore, there’s too many mistakes, and it just shuts down and that’s in essence, how the PARP inhibitor works in mutations like bracken mutations it in in scientific terms, we call it synthetic lethality, which is a fancy way of saying the two things work together to

00:33:23:17 – 00:33:54:07
Unknown
make it even more toxic to the cell. And so it works very well with cancers related to Broca and also genes related to Berocca. A lot of these are in what we call the homologous recombination or h r pathway. And some of these genes you may have heard of, they’re they’re very new like for one rad 51, B, c, D, B two.

00:33:54:12 – 00:34:30:20
Unknown
I tell my patients it’s alphabet soup, but it’s sort of all in that h r pathway. And you may have come across things in your reading that about H are deficient and H are proficient ovarian cancers. That is a distinction that helps us determine how well we think a PARP would work where the H are deficient, meaning that the cancer cells are not good at repairing DNA through h r probably the PARP inhibitors are more effective in that group of ovarian cancer.

00:34:30:22 – 00:35:00:16
Unknown
That makes sense. Thank you so much, Dr. Lou. So when it comes to genetic testing in ovarian cancer, who should consider genetic testing and what is somatic testing? Great questions. Great questions. The answer to this one is easy. Everybody. Everybody with ovarian cancer should consider genetic testing. I’m going to expand that even further. Sometimes you find out about a relative who had ovarian cancer decades ago.

00:35:00:16 – 00:35:21:14
Unknown
They may live in another country. They may have died. You need genetic testing, right? They weren’t able to. So then you would you would qualify for genetic testing. So I always tell people, everyone with ovarian cancer and if they’re not able to, their next relative, whoever we’re able to get anyone with a family history of ovarian cancer should think, do I need genetic testing?

00:35:21:18 – 00:35:43:06
Unknown
And the answer to that is probably yes. And what’s the what’s somatic testing? That’s that’s a great question. These are these are fancy words, is a very educated, if we could tell that from the questions at the beginning. So I’m so happy. It means that people are listening to their to their doctors. So somatic is a fancy way of saying tumor testing.

00:35:43:08 – 00:36:13:17
Unknown
When I say genetic testing, you’re right in that that’s a broad category and I’m not being specific enough. There are different types of genetic testing. There is genetic testing of the tumor, which we call somatic. So that genetic testing just tells us what’s different in the tumor. There’s genetic testing of what we call the germline, which is your your natural cells, the ones that are passed on to you.

00:36:13:19 – 00:36:36:20
Unknown
And I tell I tell my patients we do both for ovarian cancer. You’re supposed to have both and you’re supposed to find things in the tumor and you may not find things in the germline because the tumor is not normal. We know that because it’s cancer. We know it’s going to have mutations. But which ones it has is really important in helping us find the therapies in the germline.

00:36:37:01 – 00:37:01:08
Unknown
The majority of people will test negative, just like Lydia did, and that’s great. And that’s also important to know because like Lydia said, if she tested negative, then her children are not at risk of getting a BRAC mutation or something else from her because she tested negative. So that’s even a negative test result is really important for for you, the family.

00:37:01:10 – 00:37:31:01
Unknown
And so that’s the difference between the two types of genetic testing. But in ovarian cancer, it’s easy. You need both and everyone needs. Thank you, Dr. Lee. And then I’d like to talk a little bit about clinical trials so the people the audience wants to know what is important to know about clinical trials. And then I wanted to ask, did you know about clinical trials when you were diagnosed and when they heard Proctor talk about clinical trials to you?

00:37:31:03 – 00:38:07:01
Unknown
Okay. I go, okay, Well, in my situation, as Dr. Lu mentioned, they gave me the diagnosis during the surgery. She found the cancer, you know, stage one. After that, you know, I went back to the doctor. We went over the treatment, the chemo and all of that. But a trial treatment was not mentioned. What was really emphasized was the genetic testing and the chemotherapy.

00:38:07:03 – 00:38:34:10
Unknown
Thank you, Lydia, for sharing your experience. Yeah, clinical trials are important to be aware of, just to know that they exist. You know, it may not be right for everyone. And at every time and there’s different types of clinical trials. What I tell my ladies is I always keep an eye out for clinical trials for them If I think it’s in their best interest, depending on what we are looking for studying.

00:38:34:10 – 00:39:09:21
Unknown
And it also depends on where you are in the cancer journey, right? You know, in in Lydia’s situation where you were diagnosed thankfully very early and are doing so well. We have clinical trials that come and go sometimes to help women. For example, I know you said the chemotherapy was really tough and we recognized that. And we’re starting to develop more clinical trials to support women through chemotherapy, to help to things like rehab, physical therapy in the home.

00:39:10:03 – 00:39:33:13
Unknown
With telemedicine, a lot of our surgeons are looking at ways to reduce stress around surgery because, of course, that’s another stressful event as they’re utilizing things like music therapy in the hospital and other things like that. So so those are types of clinical trials that maybe people don’t think of when they when they traditionally think about clinical trials.

00:39:33:14 – 00:39:54:11
Unknown
So I always encourage my ladies to keep an open mind because sometimes clinical trials are different from what you expect. I think most people may think of a clinical trial as this as as like an investigational drug that was, you know, tested in mice. And this is the first time you’re going to test it in a human and you want to test it on me.

00:39:54:13 – 00:40:15:15
Unknown
I think that’s some of the bias. And I tell my patients that’s not you know, that’s not every trial, certainly because, you know, I certainly have Memorial Sloan-Kettering, because we do a lot of basic science research. We do have trials like that where the drugs are very new. We’re still learning about them. And I’m very upfront with people and I say, you know, we don’t know a lot.

00:40:15:20 – 00:40:35:10
Unknown
This is only been tested in mice in cells. Is this something you want to consider? And part of the process is us having a conversation about, well, what are the risks? What do we know? Is this the right thing for you? Is this the right time? But I also tell my patients there are other trials in what we call different phases.

00:40:35:16 – 00:40:59:00
Unknown
So there’s usually three phases to a clinical trial. What I just described is sort of our earliest phase one trials where we’re still trying to figure out a lot about the drug and maybe it’s just being tested in people, but some trials are in more advanced stages, phases like a more advanced phase one or two or even three.

00:40:59:02 – 00:41:27:22
Unknown
And these are with drugs that we’ve, you know, tested for a long time or are already approved. And being used in other cancer types that that have known safety. And we know how to use them. We’re just using them in a different way. And so I tell my patients, this is different. This is a very good medicine. This is something I wish I could give you, but I can’t because of laws and regulation, except on this clinical trial.

00:41:28:00 – 00:41:53:23
Unknown
And so the balances are on a clinical trial. Generally. The benefit is that you have access to a medicine that’s not otherwise available that your doctor couldn’t otherwise prescribe you. That may work better for your for your cancer than what’s currently available. That would be the hope. That’s the hope behind all of the trials which we designed that that what we’re testing is better than what’s currently available.

00:41:54:01 – 00:42:13:02
Unknown
And so trials give you that opportunity. But I’m also very upfront with my patients about the risks of clinical trials, the main ones being we don’t know if the drug is working, that’s why we have to test it and that the main thing is safety. You know, there there may be new things we learn and you would be part of that process.

00:42:13:08 – 00:42:30:23
Unknown
And so the actually the main focus of a clinical trial, I always tell my ladies, it’s not the drug, it’s not just the drug work, it’s you and your safety. Everything we do is is for patient safety. So, you know, clinical trials, I tell people are just, you know, they take more time because more people have to review everything.

00:42:30:23 – 00:42:58:03
Unknown
More people have to see you. We have to make sure we know all the side effects you’re having. We ask you a gazillion questions. We ask you to do additional tests just to verify the safety. So those are kind of the downsides. But the benefit is that every single one of our FDA approved drugs, like the olaparib, the PARP inhibitors, were one at one point in clinical trials to show that they worked.

00:42:58:05 – 00:43:27:07
Unknown
And those women, those patients who are on the clinical trials, they had access to those drugs often years before everyone else did, just because this process takes so long. So that’s that’s the trade off of clinical trials. Thank you, Dr. Lo. We actually have a live question that says how do how can I participate in clinical trials associated with DUI and cancers as a woman?

00:43:27:09 – 00:43:54:17
Unknown
That’s a great question. So our Our Image website has a lot of the clinical trials that are listed. ClinicalTrials.gov is a national registry of all clinical trials. And so those are definitely ways to get access to clinical trials. Unfortunately, the nature of the clinical trials is they sometimes come and go. They sometimes are only open for a period of time.

00:43:54:19 – 00:44:17:07
Unknown
So those lists are being continually updated, but those are really good resources to turn to, to look for clinical trials. Thank you so much. Talk to you. Yeah, and we’ll make sure to put all the resources at the end of the presentation. I also have some more questions. Leader Feel free to also answer these questions as well as Dr. Who.

00:44:17:09 – 00:44:42:09
Unknown
So we have some questions regarding self advocacy. So when you do get a second opinion from another doctor, how do you tell your patients to go about this and how do you feel the idea, How can you best for yourself with a health team, a health care team, who goes for a start to look at my son? Lydia, you go first.

00:44:42:09 – 00:45:10:06
Unknown
You go. Okay. Thank you. Yeah. Self advocate that. That’s very important. And I think the initial the initial step is that awareness of your body and being proactive. And if I have if I’m not in the profession, I have the right to ask for translate, I have to write also to receive copies of my medical documentation. I have to write to ask questions.

00:45:10:06 – 00:45:40:15
Unknown
I always doing my process, my my daughter, she works in the health system. She will accompany me because again, I was in in the initial stage of the cancer diagnosis, the chemo’s I was like in a in a denial, you know, I was not completely told with my medical my medical condition. So it’s always good to have someone accompany you, you know, probably a family member or best friend also.

00:45:40:15 – 00:46:08:15
Unknown
And usually the hospitals, they have an excellent unit of oncologists of social work that are specialized in oncology, and they can connect you with resources with, for example, I had helpful transportation that will pay my taxi. You know, they were very accommodating. But your best subject is yourself and it’s okay to ask for help. Don’t feel ashamed, don’t feel embarrassed, don’t feel weak.

00:46:08:19 – 00:46:34:11
Unknown
It’s okay. It’s a process. Absolutely. Lidia, that is so important for people to hear. And thank you for saying that. You’re absolutely right. You are your own best advocate, but it never to have a village. I absolutely love it when I walk into a patient room and there’s a whole, you know, a whole room of people there to support the patients because it is hard it’s so much to remember.

00:46:34:11 – 00:47:05:06
Unknown
So, you know, so many feelings, so much information. And it’s it’s good to have people there to to help listen. So that you guys can make sure someone is hearing, you know, you know, all of it, because it’s it’s hard to remember it all. And then you’re absolutely right. There’s a lot of resources that institutions have, like patient navigators, you know, support for things like parking and then support groups and organizations like Share, which are so important.

00:47:05:08 – 00:47:32:00
Unknown
And then I think part of advocate for yourself is getting as much knowledge as possible. I know we’ve harped on how genetic testing is one way to do that, but you’re right. Second, opinions are another way. And I always tell my ladies that I am a fan of that. You know, I think knowledge is power, getting other opinions, getting other options, getting opportunities for other clinical trials, other programs.

00:47:32:00 – 00:48:06:14
Unknown
These are all good things. And, you know, if that’s something that that you want, you should definitely, you know, think about doing that. And, you know, I think medical providers should support that and usually do absolutely. Thank you, Dr. Lewin, Libya. So all said there a couple more questions here. So these are regarding treatment. So the first is how can we understand all of the treatment options for ovarian cancer?

00:48:06:14 – 00:48:39:14
Unknown
And then Doctor Lieu, what determines who is a good candidate to receive bevacizumab for ovarian cancer? Yeah, Yeah. These are these are great questions. And they’re tough because there’s there’s this small there’s there’s sort of nuances to help us determine the best treatments. Bevacizumab is a very common treatment and it’s a good treatment for ovarian cancer. So I can take a step back and I can I can sort of share my approach and what I do with my patients.

00:48:39:14 – 00:49:07:17
Unknown
So, you know, we I think my job as the as the health care expert is to try to use my experience, my medical knowledge, to sift through the options and, you know, pick the ones that I think are in my patients best interest and then talk to them in a way that they can understand to help to choose together and make my opinions known, but also take into account their feelings.

00:49:07:23 – 00:49:29:03
Unknown
Because, you know, in reality, you know, like Lidia said, you know, patients are so educated, you know, they’re so invested, their family members are to they advocate for themselves. But, you know, sometimes they say to me, how do I know which one is the best trial? How do I know which treatment is the best one? You know, and it’s almost overwhelming.

00:49:29:03 – 00:49:59:03
Unknown
And so I say we’re a team. You know, my job as the medical person is to kind of filter the medical content. But there are some times when there are sometimes it’s very clear that this treatment is the right treatment. There are other times when we have options and when we have options. For example, if if one of the options we’re talking about is a chemotherapy and we’re trying to decide if we want to add bevacizumab, which sounds like might be what this person is asking, we talk about the risks and benefits, right?

00:49:59:03 – 00:50:26:00
Unknown
So we we talk about things like, well, adding bevacizumab has been shown to make chemotherapy work better and keep women’s cancer under control for longer. So from that standpoint it is beneficial. But bevacizumab, you know, has side effects and if you have certain medical conditions, it may not be in your best interest. And some of the side effects it causes may also not be in your best interest and it requires monitoring and things like that.

00:50:26:00 – 00:50:48:11
Unknown
And so those are kind of the discussions that we’ll have to figure out the best treatment. Same with clinical trials. You know, it’s oftentimes the clinical trials come with 30 pages of information and a lot of science about the background. And I think my patients rely a lot on me, too, to pick the ones that I think are the right fit.

00:50:48:11 – 00:51:06:21
Unknown
So we usually I’ll tell them, you know, I look through all of them and this is the one that I think is the best fit. And I’ll say, why It might be something like your genetic testing showed this change, and that change is exactly what is being targeted by this clinical trial. So that’s why I think is a really good match for us.

00:51:06:23 – 00:51:41:00
Unknown
So that’s kind of how I approach these decisions. Thank you, doctor. We also have some live questions that came in and someone asked, would you recommend a PARP inhibitor to someone who does not have a genetic mutation? That’s a good question. And it’s also complicated and kind of depends on the specific situation, because you’re absolutely right in that PARP inhibitors could be used to treat ovarian cancer even without mutations.

00:51:41:02 – 00:52:08:17
Unknown
We do often do something called testing for that HRR deficiency that I talked about earlier. And in tumors that are deficient even without mutations, there may still be additional benefit. But oftentimes, you know, it’s it’s weighing the risks and benefits. What’s the potential benefit of the PARP inhibitor? What are the risks? Right. Because the PARP inhibitors have side effects to they can, you know, make you feel tired.

00:52:08:23 – 00:52:28:18
Unknown
Joint pains have GI symptoms, and then in the long run, there may be a small risk, increased risk of a second blood cancer. So, you know, sometimes I say this to my patients, if, if taking medicines was as easy as eating ice cream, we just give everybody the medicines, right? We’d all be eating ice cream, but it’s not there.

00:52:28:18 – 00:52:55:02
Unknown
Side effects. We have to balance. And so part of our job is to educate people about the the risks and the benefits and then make that decision together. Totally. Totally. I agree. Thank you so much again, Doctor. Lou, we’re going to move into the closing question. So, Doctor Lou, what would you say are the main takeaways you would like to give to patients?

00:52:55:04 – 00:53:25:15
Unknown
And then, Lydia, feel free to chime in after Doctor Lou. Do you have any takeaways from your experience that you can share with the audience lately? So I think my parting words would be that, you know, knowledge is power, and knowledge helps you overcome fear. And I think that genetic testing is an important part of that. Only with the genetic testing where we have the power to to find the right treatments and also help you and your family prevent cancer.

00:53:25:15 – 00:54:17:12
Unknown
So I would say, you know, acknowledge the fear, but embrace the knowledge that helps you overcome that. It and then the what do you what would you say would be your key takeaways from your experience that you can give to? Yes. He has so many things. So many things. Absolutely. Knowledge is crucial. Testing, genetic testing, crucial. But looking back at the journey that I have and the challenges that I have in the future, cancer has taught me not that I want it back, has taught me so many things, has taught me There has been like a shift in my personality.

00:54:17:14 – 00:54:50:16
Unknown
Like now I pay more attention to details, to the here, to the now to this positive. It’s change of knowledge of of of information. I used to be my cancer. It was always the future. I’d be in control doing this, doing that. This has given me another outlook of life and has taught me what really matters. The here and now, taking care of yourself, using these wonderful resources and and continue.

00:54:50:16 – 00:55:22:15
Unknown
Continue pressing forward, continue using your resources, your faith, whatever faith. It’s really important and that there is a solution and that the technology is beautiful and we have to be sources less utilize it, utilize them and let listen to our body. Well said. Thank you so much, Lydia, for letting us know your take. And Dr. Lou, thank you as well.

00:55:22:17 – 00:56:35:20
Unknown
So for our audience, we actually have two final poll questions to wrap up our webinar that will show up on your screen. So if you could, please feel free to answer these, give you a minute to look these over. Thank you all so much for answering our poll questions. So it looks like a lot of people would proceed with the first question.

00:56:35:20 – 00:57:08:02
Unknown
If your doctor recommended genetic testing, they would feel comfortable proceeding with this. And then in our second question, we’ve actually got 100% of people now know or are educated on what is a clinical trial, which is really wonderful. So please, if you can continue spreading this education, as Dr. Liu and Lee said, it would be wonderful to continue this advocacy work and everything that we encourage you all to do.

00:57:08:04 – 00:57:32:23
Unknown
Thank you so much, Leah and Dr. Lu, for such an informative program. And thanks to all of you for participating and submitting your questions. So please know the slides and recording of this webinar will be available on our website. Share cancer support dot org in about 1 to 2 weeks, and they will also be emailed to all the people, all of you guys who registered.

00:57:33:01 – 00:58:00:18
Unknown
We also encourage everyone to check out our resources for ovarian cancer patients. We just put into the chat our available support groups in English and Spanish for ovarian patients and within our follow up email with the recording, we will also make sure to include Emma’s case resources, Latina shares, resources and share cancer supports ovarian specific resources. So if you could please take a moment to fill out the survey.

00:58:00:18 – 00:58:22:02
Unknown
At the end of the webinar, the survey will show up in your browser once the webinar ends. We would really appreciate you to take the time to do this for us and. Lastly, all surveys are anonymous and confidential, so I just wanted to say thank you all again and conclude the webinar. Thank you all for attending. Thank you so much, Olivia, for sharing your story.

00:58:22:02 – 00:58:35:23
Unknown
And Dr. Lou, it’s always a pleasure. We’re so glad to have you on board and thank you all again for attending. Hope everyone has a good night. Thank you, everyone. Thank you. Thank you.