Kelly Bethel, M.D., Scripps Clinic, lead researcher
Joan Wyllie, ovarian cancer survivor, founder of Nine Girls Ask
Related Story: Tracking Ovarian Cancer Through Blood Cells
TOM FUDGE: Coming up next on Midday, it's hard to spot, and that's why it's called the silent killer, but there may soon be a better way to catch ovarian cancer before it is too late to stop it. We will be back in a minute to tell you all about that so stay tuned to Midday Edition. You're listening to Midday Edition on KPBS I am Tom Fudge filling in for Maureen Cavanaugh. Ovarian cancer is among the top 10 most fatal cancers in the US. If you catch it early the survival rate is up around 90% but catching it early that is what is tough. The problem is there is no common and reliable test for the disease. It symptoms can be mistaken for any one of many ailments that have nothing to do with cancer. Today we are going to speak with the researching physician who is looking for a better way to detect the silent killer among people who face a possible relapse. And we will hear from a woman who has survived ovarian cancer, so please let me welcome to our studios Kelly Bethel and Joan Wyllie. Kelly Bethel is a physician at Scripps clinic who is leading research that I mentioned before, Kelly, thank you for coming in.
KELLY BETHEL: You're welcome.
TOM FUDGE: And Joan Wyllie is a cancer survivor and founder of an organization called nine girls ask, more about that later but Joan thank you very much for coming.
JOAN WYLLIE: Thank you.
TOM FUDGE: Well, Joan in fact let's start with your story. Before you were diagnosed with ovarian cancer it sounds like you had a very frustrating experience trying to find out what was wrong with you.
JOAN WYLLIE: That is true, Tom. I actually took six months for them to diagnose me. It was six months of misdiagnosis by nine physicians. And once diagnosed, they found I had stage IV ovarian cancer.
TOM FUDGE: Why do they have such a hard time knowing what was wrong with you?
JOAN WYLLE: Because it mimics so many other diseases and they do not look for okay with ovarian cancer typically first unless you have definite symptoms that present themselves, so it mimics so many other diseases that they kind of shoved it off to those diseases before they actually check.
TOM FUDGE: For instance what did they think you had?
JOAN WYLLIE: Irritable bowel syndrome, urinary tract infection they were not sure.
TOM FUDGE: How were you finally diagnosed?
JOAN WYLLIE: I actually demanded laparoscopic surgery and a wonderful time transcripts developer topics in surgery went in and say we weren't even stage IV and were even sure I was going to make it through the surgery.
TOM FUDGE: Laparoscopic surgery meaning they cut you open and put a camera in there to see what you have?
JOAN WYLLIE: They actually inserted tubes into my abdomen I believe there were two tubes in my abdomen and they took a look so it was more exploratory surgery, minimally invasive.
TOM FUDGE: You say you were diagnosed with stage IV ovarian cancer and this was back in 2008. What does that mean? What is stage IV?
JOAN WYLLIE: Stage IV is very serious it means it's metastasizeD to other parts of the organ, other parts of the body. I had part of my colon removed and a full debulking oeuphrectomy surgery. And I am now five years cancer free which is, they said I had a 5% chance of lasting this long or surviving this long and here I am.
TOM FUDGE: Dr. Bethel, let me go to you how common is ovarian cancer and who does it effect typically?
KELLY BETHEL: Typically affects women in their 50s and 60s although certainly you see it in younger or older women.
TOM FUDGE: OK do you don't have to be in your 50s or 60s in order to get a diagnosis, tell us a little bit does it more commonly affect women who had children are does that have nothing to be doing that.
KELLY BETHEL: It can be seen in both of those populations and so I think I would use the fact of whether you've had children or not to feel a great deal of relief for a great deal of concern.
TOM FUDGE: Tell us about the research you are doing and first of all what are you trying to do what are you trying to find out?
KELLY BETHEL: So I practice as a diagnostic pathologist within Scripps medical group. I spend most my time looking through the microscope diagnosing cancer most of my time is spent looking at the blood diagnose cancers of the blood. The way I got involved with ovarian cancer through an NIH funded study actually I teamed up with another researcher who promised to be able to show me cells from solid tumors, in other words, not liquid tumors of the blood, but solid tumors like ovarian cancer, cells from that in the bloodstream. So if I can look at those types of cells with my microscope I can do a much better job of diagnosing whether a solid tumor is present in the patient. I can evaluate those cells and try to make some conclusions about is the cancer getting better, is a cancer getting worse, is the cancer responding to therapy and I can do that without having to do maybe some of the things that John went through like surgery to get inside the person and get a piece of tissue. I can get some cells just from a blood draw and do some work on those cells as a biopsy, we call it a fluid biopsy.
TOM FUDGE: A fluid biopsy so you look about cells and know if there's a tumor?
KELLY BETHEL: They're not actually blood cells sausage again amongst all the cells in the bloodstream there are rehearsal cells circulating actually came from the solid tumor and every once in a while they sneak out into the bloodstream and if we find them and pull them out and evaluate just the cells we can learn about the solid tumor in the spent most of the development of this that's what's exciting about this research is that the technology to be able to do that is now available.
TOM FUDGE: So you can take a blood test and find out if someone has ovarian cancer sometime in the future if all this works out.
KELLY BETHEL: Yes that would be the theoretical, wonderful outcome. That is not where we are at right now. Where we are at right now is we're hoping to be able to take blood draws from women who we know to have had ovarian cancer and to detect whether the cells from their ovarian cancer are present in the bloodstream and if the cells are either raising in number or potentially showing us some genetic changes, we might be able to ascertain much more quickly sooner in there course whether the cancer is coming back.
TOM FUDGE: So you are doing doing a study sounds like you're getting people to volunteer to be a part of.
KELLY BETHEL: So it's been great working with Joan and Joan's organization on the big problem is that people know there's a lot of difficulty funding research right now and we had done some very basic work, published a bunch of papers last year on this technology and method of finding cancer cells and we were really stuck because I really wanted to translate this into the clinic but we needed a lot of women who had ovarian cancer to participate. And so Jones organization, we made a grant application to organization and she and her group of women have funded us so that we now are able to enroll large groups of women who have had ovarian cancer and hopefully we can make a lot of progress with this.
TOM FUDGE: Joan, are you part of the study?
JOAN WYLLIE: I am and what's really wonderful is other women who are part of the organization who are survivors are able to produce. The study that we helped fund so that is
TOM FUDGE: Joan Wyllie is a survivor, founder of nine girls ask and Kelly Bethel is at Scripps physician and she's leading research into finding ways to better detect ovarian cancer. How many volunteers do you need?
KELLY BETHEL: Right now we are looking for about 19 more. And so, we may be able to enroll more women. That that, but for the study right now we are looking for 19.
TOM FUDGE: Dr. Bethel, obviously you heard John's story and I'm sure you've heard it before. Is that typical for a person to have stage IV cancer and be able to survive?
KELLY BETHEL: That is very unusual. Joan has had an unusual and amazing story. Ovarian cancer typically a she said is diagnosed quite late and for many women who have stage IV it is a difficult road and John is really miniature. Had a great outcome.
TOM FUDGE: Among cancers why is ovarian cancer so hard to detect?
KELLY BETHEL: Because is located in organs that are deeply located within the body. So, a lot of cancers for example if you have lung cancer it is usually near your airwaves, so you get a cost pretty early on. If you have breast cancer there is a palpable lump if there's a lot of different cancers that give you lumps and bumps that you can clinically noticed that the ovaries are tucked away deep and safe so fortunately taken a lot of stuff wrong with them before you are aware as we discussed they produce very subtle symptoms and mild abdominal discomfort, a lot of bloating and really who has not had said bloating or mild abdominal discomfort so they are very vague symptoms and that's what it makes it hard to diagnose.
TOM FUDGE: Joan do you want to comment on that what did it feel like you had? What did you think it was?
JOAN WYLLIE: Actually I was extremely bloated which is very unusual for me I think it was my most prevalent system symptom I also had pelvic pressure, many bowel problems, I could only eat small amounts of food at a time without feeling overly full and I got in. Typical symptoms. And I think most women experience those.
TOM FUDGE: We may have ovarian cancer
JOAN WYLLIE: Or when you have something else that's why it's so closely mimics other diseases.
TOM FUDGE: I have to imagine her a lot of women listening to this thing now I find bloating or if they have symptoms should I go to the doctor and asked if I should get laparoscopic surgery to see if I have ovarian cancer
JOAN WYLLIE: I can answer that actually if it persists more than two or three weeks absolutely go to your doctor and have it checked.
TOM FUDGE: Dr. Bethel going back to you and your study you are looking at women, people in the study will be women who had ovarian cancer and might have a relapse. Why did you choose to work with a group of people?
KELLY BETHEL: We actually have several studies going on right now, so we have a different study where we are looking at women writers initially get diagnosed with ovarian cancer and then the money from Jones group allowed us to expand into this group of women who have already had ovarian cancer so we are looking at it from several angles but I will say that actually for tests of this sort and research of this sort it is usually most useful to start with women that you know already have the type of cancer that you are researching because your samples will have more cancer cells in them if you know the patient has cancer and usually what you do is sort of backup along the continuum of time, so first you work with the women who have known cancer, and then if that turns out to be useful you back at that time and try to apply it for women who are may be at risk for having cancer and back that up eventually to maybe all women who may have cancer.
TOM FUDGE: So that is the ultimate goal I guess, being able to have somebody give you a blood test and be able to look at it and say you've got it or you don't
KELLY BETHEL: Right a blood test is really the holy Grail is a screening test for ovarian cancer for all cancers, actually because you would really like to be able to test women who are at an age to be at risk and be able to have a simple noninvasive easy to repeat annual kind of test that you could do which a blood draw would qualify as that you could use to pick up women and even if it didn't firmly make a diagnosis which it probably never will it might at least identify women who need to go back to the doctor and have further evaluation done. That is not where we are at right now with the research but eventually that would be the sort of thing we would like to be able to do.
TOM FUDGE: Joan, let me ask you about your support group called nine group, nine girls ask. How did you come to for that and why did you?
JOAN WYLLIE: During my chemo I reached out and try to find a woman I could talk to who had walked my steps before me and I could not find anyone. Of course that was five years ago. During my chemo, which I had a very rough six chemotherapy treatments and I truly hardly even remember doing it but I decided I was going to form an organization that would reach out to them and help them to be there to have a shoulder to lean on. So before you we obtained the 501(c)(3) and before I knew it this organization I have a tiger by the tail actually there is such a need for it and now we raise funds, we offer one-on-one patient outreach and we raise awareness.
TOM FUDGE: I looked at your website and it's very handy for learning about ovarian cancer. What is it ninegirlsask.com
JOAN WYLLIE: It's www.Ninegirlsask.org.
TOM FUDGE: Dr. Bethel let me ask you something else imaging studies, what are imaging studies and can may be used to detect ovarian cancer?
KELLY BETHEL: Imaging studies are certainly part of the work for some and you expect might have ovarian cancer there is a physical exam component of working some monopoly believe maybe at risk and there are imaging studies. Unfortunately imaging studies have a limitation which is they cannot really detect a lump until it is quicker than about a centimeter, so it may be useful for diagnosing someone with me first are diagnosed with ovarian cancer and they have a large mass or a large cyst but for example when you are looking for a relapse a lot of times ovarian cancer either comes back as a very thin coating or tiny deposits at various places in the abdomen and imaging is not terribly useful for that kind of tumor presentation.
TOM FUDGE: It sounds like you're saying imaging studies are okay if you want to catch it in stage IV after metastasized
KELLY BETHEL: Or very big.
TOM FUDGE: So that's the problem you do not catch it early with imaging studies. John are there things you do on a regular basis and sewer of survivor of ovarian cancer to make sure it's not coming back.
JOAN WYLLIE: There are no guarantees that it won't come back that's for sure and ovarian cancer is a (inaudible) is no a evidence disease we call it dancing with Ned as opposed to in remission. So if a five-year mark is huge but it's not a for sure thing as with many other cancers and I do practice integrative medicine. Ayurvedic medicine, so I'm very conscious of what I eat, I meditate, I try to exercise as often as possible and I really try to live a healthy lifestyle so I know that I've done everything I can do this possible to keep it away.
TOM FUDGE: Dr. Bethel, I think I saw on some lists that ovarian cancer came in number eight or nine in terms of the number of deaths, the greatest cancer killer, so how many women in the US get ovarian cancer every year? If you know the answer to the question. If you don't, it's not a big deal. So, while we are almost out of time to women who might want to participate in your study, how do they contact you?
KELLY BETHEL: We have a phone number that we have posted to the website and the phone number is to our nurse coordinator who is funded by Joan's organization and her job is to talk with women and see if they qualify for the study and the can see if they can enroll them in the study and she can draw their blood if they qualify so that's the way to do it go to the website and look for the phone number there.
TOM FUDGE: Joan, how has being a cancer survivor changed you in terms of your relationship with your family and with other people?
JOAN WYLLIE: It's made a huge impact on my life. I always, people ask me if I would go back before I had cancer and I absolutely would not. My life is more enriched. I had a good life. To be diagnosed now my life is more enriched. The women that I've met are just fabulous, they are strong they are courageous. I have wonderful friends, I just found my life is full of blessings now.
TOM FUDGE: And thank you very much for joining us. We have been joined by Joan Wyllie who you have just heard from. She's an ovarian cancer survivor, founder of nine girls ask. Joan thanks for coming in. Thank you, Tom and thanks also to Dr. Kelly Bethel who is a physician at Scripps clinic and she's leading research into how to better detect ovarian cancer which in the past has been called a silent killer. And Kelly, thank you very much.
KELLY BETHEL: Thank you.