www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 1 Update on Gynecological Cancers: Prevention, Diagnosis and Treatment Webcast January 28, 2009 Barbara Goff, M.D. Jane VanVoorst Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. Introduction Andrew Schorr: Find out how you have the best chance of a cure or longer life if you're diagnosed with ovarian cancer. Hear about how being overweight increases your risk of endometrial cancer and learn how the HPV vaccine continues to be a cancer breakthrough for women. It's all next on Patient Power. Andrew Schorr: Hello. This is Andrew Schorr with another one of our Patient Power programs sponsored by the Seattle Cancer Care Alliance. Thank you for being with us. One of the areas that women think about of course is a whole range of gynecological cancers: Ovarian cancer, uterine or endometrial cancer, cervical cancer. There are other types as well. And so we're going to discuss that in our program, how to you get the best care, certainly what are things that raise your risk, and how can you prevent these cancers at all or certainly also prevent a recurrence if you are diagnosed. I want to introduce you to someone who has faced one of the scariest cancers, but I guess I'd say as a leukemia survivor that all cancers are scary, and that's Jane VanVoorst. Jane is 56 years old. She works in the banking field in Bellingham, Washington, where she lives. She has two grown sons. But two years ago about she was diagnosed with ovarian cancer, and she learned a lot along the way. Happily she's doing well, but we wanted to share that story. And then we'll introduce you to her doctor, who is one of the leading gynecological cancer experts in the world, and we'll be with her in just a minute. But, Jane, welcome to Patient Power. Tell us about the symptoms you were having that made you think maybe things weren't quite right. Jane’s Story Jane: Thank you, Andrew. It's a pleasure to be here. My initial symptoms were early on, and it was blooding, rare but occasional. At the time however I didn't know it was a symptom, so what took me to the doctor was a had a general sense of not feeling www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 2 well, not doing well. I'm a runner, I ate well, I exercise, I took good care of myself, and something just felt off. It was time for my annual checkup, so I went to my GP, general practitioner, and told him what was going on, and he did a little bit deeper analysis and said, I think there might be something going on, simply because I mentioned the bloating. He sent me in for the ultrasound, and there I had to get several because coincidentally I had an infection that arose at the same time in my abdomen where I had a high fever. And bottom line is after looking at that the radiologist up here thought that perhaps was simply the residuals of an infection, let's wait six months. But my GP, because he knew me and knew that normally I do quite well said, no, I don't think so, and got me to a local gynecologist here in town in Bellingham who did an exam and said pretty much, I think I know what you have and then referred me to either Seattle Cancer Care Alliance or Swedish, and I let her pick. She was very familiar with Dr. Goff and her work, and so she got me to Seattle Cancer Care, and the rest I guess is history. Andrew Schorr: And the history is that then you did have surgery and then six months of chemo starting in the fall of 2006 with the surgery. And you go in for checkups, but you're doing really well. Jane: I'm doing very well. Thank you. Andrew Schorr: Oh, that is so good. Now, you mentioned Dr. Goff, and let's bring her on. That is Dr. Barbara Goff, who has been on Patient Power before. She is a professor at the University of Washington and director of gynecologic oncology at the University of Washington Medical Center and the Seattle Cancer Care Alliance. Dr. Goff, I understand in ovarian cancer where you go, now studies show, really makes a difference in how well you may do. Help us understand that. Ovarian Cancer Studies Dr. Goff: Ovarian cancer is a complex disease, and unfortunately most of the time when women get to the doctor the cancer has already spread beyond the ovaries. So the surgery when you go in and you try to remove the cancer it's very important that you go to a center where there's experts in dealing with the surgical procedures that need to be done when you make that initial diagnosis of ovarian cancer. Oftentimes a bowel resection needs to be done, extensive dissection. But what's really key in ovarian cancer is getting all the cancer out, and there have been now numerous studies, probably about 30 studies both here and in Europe and in Asia which show that when women are treated by gynecologic oncologists or treated in centers that specialize in gynecologic cancers, specifically ovarian cancer, www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 3 that their cure rates are significantly higher than women who are not. So I think it's very important if someone even suggests that you have ovarian cancer that you really seek out a consultation with someone who has expertise in ovarian cancer. Andrew Schorr: Now, let's talk about the problem of ovarian cancer, and then we're going to move on to others as well. But in ovarian cancer typically it's found late, and maybe there were warning signs, maybe there weren't. I know you have been an author of research related to are there sort of a group of subtle symptom that could suggest it. Jane referred to some bloating and didn't feel quite right. Help us understand what we know today that could give a woman a clue that she should be checked further. Dr. Goff: That's a great question. Historically ovarian cancer was always called the silent killer because people thought that symptoms weren't supposed to develop until advanced stages when there was really no chance of cure. But really through some partnering with some patients of mine and the Ovarian Cancer National Alliance I started doing some research about what are the symptoms that women present with. Is it true that it's silent, or is it not true that it's silent? And through a number of research publications we've really sort of narrowed it down to a set of key symptoms that if women have these symptoms they're still very unlikely to have ovarian cancer but they should have it checked out. The symptoms that are most important include bloating, increased abdominal size, abdominal pain, pelvic pain, difficulty eating, feeling full quickly, and having some urinary symptoms. It's not just having these symptoms occasionally, once or twice, but it's that these symptoms occur fairly consistently, every day or every other day, and that these symptoms are new to patients. So similar to what Jane said is that, you know, I've always been normal and all of a sudden now why am I getting bloating now. And a lot of women just sort of pass it off as going through menopause or getting older, but it's very key that if you have these symptoms that you at least go in and get yourself checked out. It's unlikely you'll have ovarian cancer, but those are the early warning signs of ovarian cancer. Types of Gynecological Cancers Andrew Schorr: All right. Let's understand some of the other gynecologic cancers. We know about cervical cancer, and hopefully women are getting pap smears, and you'll help us understand about that. And younger women now it's recommended that they have this HPV vaccine, and you and I will talk about that before and we'll talk about that as we go. And then there's uterine or endometrial cancer, and I know there's some others as well. And I know there's some thinking now that related to cancer are epidemic, if you will, of obesity, and obesity among women could be a factor. So help us understand the thinking about a connection between obesity and either cancer the first time or a recurrence. www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 4 Dr. Goff: Yeah, well, I think that's another great question. Certainly obesity is probably the number one risk factor for development of uterine or endometrial cancer. Endometrial cancer is actually the most common gynecologic malignancy, and a lot of women don't realize that, but it is the most common GYN cancer that women get, and it is related to obesity. And the reason for that is that the fat cells in our body will convert some of the steroids that are made by other organs in our body into estrogens, and so women who are obese have very, very high levels of estrogen that they actually make on their own. So for example if a woman is 50 pounds overweight her risk of getting endometrial cancer is about 10 times greater than a woman who is of normal weight. So what we are seeing as GYN oncologists is that there are increasing numbers of women who are getting endometrial cancer. And what's a little bit scary is that we're seeing it in younger and younger women as we're seeing the obesity epidemic start to hit children and start to hit women in their younger ages. This used to be a disease that we only saw after women went through menopause, but we're seeing greater numbers of women even in their 30s and 40s now developing endometrial cancer because of their obesity. Obesity is also linked to breast cancer, and we're not really talking about breast cancer today, but it is a risk factor for breast cancer again because of the elevated levels of estrogen. I think the other thing that's really important in terms of recurrence is that there have now been a number of studies that show that people in who engage in moderate amounts of exercise following their cancer diagnosis can actually significantly reduce their risk of recurrence. And there have been some studies specifically looking at women in breast cancer and in colon cancer, and women who engage in moderate amounts of activity after their cancer diagnosis can have up to a 30 percent reduction in their risk of recurrence if they sustain that moderate amount of exercise. Andrew Schorr: All right. I just want to recap some of this, put it in perspective. So going back to ovarian for a minute, there are some subtle symptom that if a woman experiences, and you listed those, she should at least be checked. Related to cervical cancer, that's what the pap smear is all about, right? Cervical Cancer and HPV Dr. Goff: Yeah, and the HPV vaccine. I think it's really important to emphasize that currently the HPV vaccine, it's FDA approved for women age 26 and under, and I think anyone who is, any girl in her teens or a woman who is 26 or younger really should get the HPV vaccine because it has over a 90 percent ability to reduce the HPV infections which are the direct cause of cervical cancer. www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 5 Andrew Schorr: Okay. And then we talked about obesity and then exercise for women. That's good any time but also certainly if you've been diagnosed as well. Now, what about also the signs of endometrial cancer, uterine cancer? What are the signs there? We talked about it being seen unfortunately often later in ovarian, but are there some more direct clues when it comes to either premenopausal or postmenopausal, which I know it's more common, endometrial cancer? Dr. Goff: Endometrial cancer is actually usually diagnosed in early stages, and that's because there are some early warning symptoms that most women recognize as not normal and they get themselves in to the doctor. So for postmenopausal women, and the majority of endometrial cancers do occur in women who are postmenopausal, about 75 percent will, and so for them the most common warning sign or the early symptom would be postmenopausal bleeding. So any woman who has any bleeding after the menopause should go right in to their gynecologist and get checked out. Usually that results in a woman getting a biopsy of the lining of the uterus or sometimes an ultrasound of the uterine to look at how thick the lining of the uterus is. For premenopausal women the symptoms of endometrial cancer would be irregular bleeding, bleeding heavier than normal, bleeding longer than normal, passing large amounts of clots or bleeding in between the menses. So any time you have an abnormality with your menses it's important to go and get that checked out by your doctor because it could be a sign of cancer. Now, in most premenopausal women, particularly if you are of normal weight, abnormal bleeding is not going to be related to cancer. So again we don't want to scare anyone, but it is important to have abnormal menses or abnormal bleeding definitely checked out by a gynecologist. Endometriosis and Endometrial Cancer Andrew Schorr: Dr. Goff, some women experience endometriosis. Is there any connection between that and later developing endometrial cancer? Dr. Goff: No, there doesn't appear to be a connection between endometriosis and endometrial cancer. There have been a couple of studies that suggest that endometriosis may increase the risk of ovarian cancer, but that's a very weak association, so I don't think anyone, if they've had endometriosis, that's a very common disease, I don't think that they should be too concerned that later on they're at elevated risk for cancer. Andrew Schorr: What if they had nonmalignant fibroid tumors? www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 6 Dr. Goff: No, those do not appear to increase a woman's risk of either uterine cancer or cervical cancer or ovarian cancer. Andrew Schorr: Well, that's all good to know. Now let's talk about treatment. Now, Jane, you had surgery, and I imagine with ovarian cancer it's fairly extensive. How long did it take to recover? Jane: I was in the hospital 13 days. Andrew Schorr: Wow. Jane: Which was unusually long. It usually isn't quite that long, but I was in there for at least that. And then I was probably quite weakened for another month or so. Andrew Schorr: Now, Dr. Goff, I know there are some new techniques related to surgery and even robots being used. Help us understand where you are now with surgical techniques. I know they vary by patient, but what's being offered at the SCCA? Dr. Goff: You know, I think the robotic surgery is one of the most exciting things that we are now offering patients because it allows women to have fairly extensive cancer surgical procedures through generally four or five very tiny, maybe less than an inch incisions in their abdomen, and oftentimes these women can actually go home the next day. So the cancers that are best treated with robotic surgery are the endometrial cancers and the cervix cancers. Unfortunately with ovarian cancer because there tends to be so much extensive spread, those still need to be treated sort of the old fashioned, big abdominal incision. And what's key in that case is getting all the cancer out, and so cosmetics and time in the hospital sort of take a back seat to trying to get the best cure rate that you can because ovarian cancer is the deadliest of the gynecologic cancers that we treat. When we do surgery for ovarian cancer we often use a lot of fancy lasers and other techniques to ablate cancer. We do a lot of bowel resections, so we have very special staplers and all sorts of other sort of high-tech instruments that we have to make the surgery faster and more successful, things we have that reduce blood loss that really allow us to be much more aggressive in the operating room than we used to be to really improve those cure rates. Because that's really the goal with ovarian cancer is giving that patient the absolute best cure rate that you can. Andrew Schorr: Right. Now, of course in ovarian cancer as an example but maybe some more advanced endometrial cancers and others, then often there's drug therapy and www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 7 maybe in some cases radiation too. So help us understand, take in like Jane's case, Jane we mentioned had six months of chemotherapy. Where are we now with improvements in the drug therapies and the delivery? Drug Therapies and Treatment Delivery Dr. Goff: Ovarian cancer, this is a disease that requires both a surgical phase of treatment and a chemotherapy phase of treatment. When you have been able to successfully remove all of the cancer then you can offer the patient the opportunity of having chemotherapy directly delivered into the abdominal cavity. And that has been associated with a significant improvement in survival for women. So now that, it used to be the average length of time that women survived was about three years, and there was about a 20 percent chance of cure. With appropriate, with an optimal surgery where you get out all the cancer and giving women intraperitoneal chemotherapy we can push that cure rate very close to about 50 percent. We'd love to have it a hundred, but that's a lot better than 20 percent if we're looking at 50 percent. And the average length of time even if you don't survive is over five years. So we've really made a substantial improvement in the treatment of ovarian cancer through direct delivery of the chemotherapy into the abdomen. I think one of the other really exciting areas in cancer treatment, not only for gynecologic cancers but really for all cancers, is the development of these very new and novel biologic agents where we have new chemotherapies that directly target specific enzymes or specific antibodies that are on the cancer. And so you go in and with almost surgical precision you can knock out a certain enzyme in a cell which then kills the cell and results in quite a bit less toxicity. Because I think Jane will tell you what she went through was quite toxic, but some of the newer drugs that we have are actually quite a bit less toxic. They're all in different phases of development, but I think it's a very exciting time to be a cancer physician because of all of these new drugs that are coming out and that are available. Andrew Schorr: Yeah, I have to tell my story briefly. So I'm a leukemia survivor, diagnosed more than 12, almost 13 years ago, and then I was in a clinical trial, a phase II clinical trial just at a single center. And then it was really neat to be at one of the big cancer conventions a couple of months ago, and there were now two big phase III trials that studied the drugs I had eight years before, and it validated it, and now it's the world standard. So that brings me to a discussion of trials. At the SCCA, in these areas that are fast changing, because you talked about changes from just when Jane had treatment two years ago, tell us about the trials in gynecologic oncology. Are you excited about those? You mentioned these new drugs, and it seems like you're refining your surgical techniques as well. www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 8 Dr. Goff: Yeah. We participate in a number of large group trials through the Gynecologic Oncology Group, which is an NCI-sponsored cooperative group trial, which NCI is National Cancer Institute. We also have our own investigator-initiated trials, and there is a lot of excitement in terms of these new drugs. There are new methods of delivering drugs. There are new surgical techniques that we are trialing. And so I think it's really important for patients to understand the importance of participating in clinical trials like you did because it's the only way that we can advance our knowledge and figure out what should be the standard of care, what is going to be better. And so that's very important. You know, when Jane came through we actually didn't have a clinical trial that matched where she was, and so she didn't end up going on a clinical trial, but she benefited from a clinical trial that had just closed right prior to her being diagnosed, which we were able to use that information and sort of change the standard of care, which used to be just giving chemotherapy intravenously to giving chemotherapy intraabdominally. But whenever possible we do try to offer a menu of clinical trials for our patients if they will qualify and if it seems to be appropriate. So I think it's important for patients not to be afraid of clinical trials but understand that they have help advance science and advance knowledge for the people coming sometimes just right behind them in terms of what is the best way to treat these cancers. Andrew Schorr: I know that doctors, researchers don't like to promote it that way, but I feel that I got today's medicine yesterday, or if it's a trial now, maybe tomorrow's medicine today. Dr. Goff: Yes. Andrew Schorr: So that's something from the patient's point of view to consider. One last area I wanted to ask you about, Dr. Goff, and I want to hear more from Jane too, so any of us who are diagnosed with cancer, men or women, say do we have to worry about our kids. Is there a genetic connection? So in the gynecologic cancers, what about that? Genetics and Gynecologic Cancers Dr. Goff: Certainly for ovarian cancer there is a genetic link with that type of cancer. With endometrial cancer there is a small percentage of cancers that are genetically linked. With ovarian cancer about 15 percent of them do have a genetic component. Most of those cancers are seen in families that have premenopausal breast cancer and ovarian cancers associated together, and there are some other more rare cancers that you can sometimes see. These would be fallopian tube www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 9 cancers; male breast cancer; primary peritoneal cancers, which are cancers of the lining of the abdomen. Those also constitute part of that syndrome. So we strongly encourage our patients at SCCA who have been diagnosed with ovarian cancer to at least speak with a genetic counselor, have their family history taken, and see whether or not it makes sense for them to go ahead and get genetic testing to see whether or not they have one of these genes which predispose them to developing ovarian cancer and breast cancer. And then other families members can choose whether or not they would also like to undergo genetic testing, because any family member who is directly related to that woman, if it be a sister or a brother, a mother or a daughter, they would have a 50 percent chance of inheriting that gene. Andrew Schorr: So, Jane, you have two sons. Do you have any daughters-in-law yet? Jane: Not yet. Andrew Schorr: Okay. Well, hopefully some day you will or even granddaughters. So you've lived it, and now we've gotten a lot of education from Dr. Goff related to cancers in women, gynecologic ones. So what would you say to somebody listening? You went the extra mile with advice from a doctor as well, and I think it's made a big difference, and you went to a key center and a leading gynecologic oncology specialist to help you with treatment, with her team. What would you say to women listening either related to being proactive, the prevention things we heard, or just getting to the right place for care? Jane: If I was talking to someone, just women in general, as I do now, I'd tell them two things: Get fit and know the symptoms. And if you've got any of the symptoms go to the doctor. The likelihood you've got the disease is small, but at least you won't have it diagnosed late stage like I did. They'll catch it early if in fact you do have it. When I talk to women who are currently ill or have just been diagnosed I tell them, almost echo what Dr. Goff said, I tell them all that your best chance of survival is getting to a gynecological oncologist who is at a specialty care clinic. And we are very fortunate in the Northwest. I tell anyone in the Northwest, go to Seattle Cancer Care, because from a patient's perspective as important as it is that you have that survival, when you're in treatment you're so inside your head and you're so, since you've been through it you know. You have that natural fear. What you also need is a clinic that does nothing but deal with women or men like you so that they know what you're going through, they can anticipate what you're feeling, and give you total care, not just healthcare. And I think the U-Dub excelled at knowing how to treat patients and knowing how to make us feel like we were their only concern when we were there. www.patientpower.info sccapatientpower.org SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 10 And then I also tell people when they're going through treatment to find another woman who has had the disease before them. That would have benefited me greatly when I was going through it because for me everything was new, and with new everything is a little bit fearful. But once I got to talk to people who had been through it they could tell me what to expect, and they gave me tips. So that's what I try to do now is to provide that service to women. And then post treatment I tell them to avoid worrying, because until someone tells me it is a cure for cancer or a preventive measure of getting cancer I'm not going to do it. Spend that energy finding a way to last. Spend that energy finding a way to find hope. And then get fit, exercise, eat right and count your blessings. Andrew Schorr: Absolutely. And that's all great advice. One thing I would just like to say, my perspective too, and, Dr. Goff, I'm sure you feel this way too, it's very helpful to have support from people who have sort of walked in your shoes ahead of you, but know that everybody's cancer situation is different. In all the cancer programs I've done we keep seeing subtypes and different situations. People react to drugs differently or recover from surgery differently. So you need to know that. And also even in situations where the statistics have not been great, and ovarian cancer, thank goodness, is improving, you're not a statistic. Any comments on that sort of individualization and the statistics, applying it to one person, Dr. Goff? Dr. Goff: Well, I think that's absolutely right. What I say to every single patient who I treat, and particularly with ovarian cancer where you're not giving people statistics of a 90 percent chance of cure, I think it's very important to understand that statistics apply to the 100 people over there. They never apply to an individual. And you will either live or die from the cancer, and our job is to do everything we can to get you cured from this cancer. And that's really how I approach every patient as an individual, and every individual has to approach their cancer that way. You also have to be very careful about what you read on the internet because it may not apply to you. As you said, every cancer is a little bit different. There are different grades, there are different histologies, and not all ovarian cancers are the same. And so you can go and look up all of these horrible statistics on the internet, but they may not completely apply to you at all. So I think you need to be very careful. The other thing I think is very important is you have to feel like your doctor is a member of your team, and so you should not be afraid to get a second opinion and to see if there is somebody else who you would make a better team with because I think that that's really important. The patient and the physician have to work together. It has to be a team effort. It can't just be the patient, it can't just be the doctor, but it has to be the two of you together deciding that you're going to treat this cancer and you're going to do what you can to get that cure. [...]... exciting Andrew Schorr: Great news And, Jane, are you optimistic about the future for yourself? Jane: Oh, absolutely Absolutely I plan on Dr Goff doing an inspection on me on my hundredth birthday Andrew Schorr: All right Well, it sounds like you two have a great relationship, and that is so important too I want to thank you both for being with us We've learned so much today This is what we do on Patient...Andrew Schorr: Great, great advice So it sounds like you are optimistic You're seeing change, and it sounds like things are improving I imagine there was a time in oncology and gynecologic oncology where it was just really tough because it was in some of the areas tough to help people live long, and it sounds like there's a lot of progress going on Dr Goff: Absolutely That's... gynecologic oncology because we are seeing all of these advances You know, robotic surgery is allowing us to do surgery in very obese women and allow them to go home the next day and have minimal amounts of pain That is a huge, huge change And we are seeing, with better chemotherapeutic agents, different delivery methods, we are seeing some improvement in how women with ovarian cancer how long they live and. .. what we do on Patient Power, and we do it every two weeks with support from the Seattle Cancer Care Alliance So I thank you for listening I'm Andrew Schorr Remember, knowledge can be the best medicine of all Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power Our discussions are not a substitute for... are not a substitute for seeking medical advice or care from your own doctor That’s how you’ll get care that’s most appropriate for you www.patientpower.info SCCA012809/0203/AS/jf sccapatientpower.org © 2009 Seattle Cancer Care Alliance All Rights Reserved 11 . SCCA012809/0203/AS/jf © 2009 Seattle Cancer Care Alliance All Rights Reserved 1 Update on Gynecological Cancers: Prevention, Diagnosis and Treatment Webcast January 28, 2009 Barbara Goff,. GP, general practitioner, and told him what was going on, and he did a little bit deeper analysis and said, I think there might be something going on, simply because I mentioned the bloating the most common gynecologic malignancy, and a lot of women don't realize that, but it is the most common GYN cancer that women get, and it is related to obesity. And the reason for that