Change the Course: Early Detection for Pancreatic Cancer

hi everyone I'm Julie fleshman president and CEO of panan thank you for joining us today for our special World Pancreatic Cancer Day event today I'm excited to be with all of you for a conversation about the latest and early detection is part of pancreatic cancer awareness month we will talk about the latest research what to know about Imaging and diagnostic test and how everyone can better understand their risks and know the signs and symptoms to look for there will be a lot of information provided today so if you have any questions or need free personalized support PanAm patient services is available to you via phone and email Monday through Friday from 700 a.m. to 5:00 p.m. Pacific time this free service connects you to an expert case manager who can answer all of your questions thank you to our Pancreatic Cancer Awareness Month sponsor astrazenica thank you to our webinar sponsors ABY astroica Boston Scientific Grail Ipson and novocure and thank you to our scientific and medical Affairs industry members astrazenica Bristol Meer squib fiber Jen Ipson Mora Therapeutics novaris and novocure and a very special thank you to all of our donors who have join today the progress highlighted today is because of you now I'm excited to introduce you to our panel of very special guests Pamela Jackson is a 12-year pancreatic cancer survivor and a member of panan Survivor Council a longtime panan volunteer and Advocate she is especially passionate about making sure the black community has more information on pancreatic cancer risk factors and symptoms Dr Rosalie Sears is a professor in the department of molecular and medical genetics and co-director of the Bryan Coulson Center for Pancreatic Cancer Care at Oregon Health and Science University she is also a member of pancan scientific and medical Advisory Board Dr sapna single is director of research in the division of cancer genetics and prevention as well as director of strategic planning for prevention and early cancer detection at Dana Farber Cancer Institute she also leads the cancer risk prevention and early detection program at Dana Farber Harvard Cancer Center and is a professor of medicine at Harvard Medical School Dr single is also a member of panan scientific and medical Advisory Board Dr avanos Kad daoni is chief of the abdominal Imaging Division and director of the center for research and Innovation and abdominal Imaging at Massachusetts General Hospital he is also associate professor at Harvard Medical School and medical director for Martha's Vineyard Hospital imaging he is also co-principal investigator for pan can early detection initiative and finally we have Deborah selingo with us today she is a manager on our pan Camp patient services team leading an incredible and caring group of case managers who speak to patients and families every day providing free information and resources okay everyone let's get started Dr single the first question is for you it's important for everyone to be aware of the signs and symptoms of pancreatic cancer would you talk through the warning signs and what people should be aware of sure um Julie thank you for having me on this um webinar it's my pleasure to be here today with all all of you um I think the signs and symptoms the complicated part of pancreatic cancer uh symptoms is that they're very non-specific um you know and I think that's one of the big problems of picking up pancreatic cancer early because you have some symptoms that are kind of vague and can be associated with a lot of things that are not serious and then the symptoms that are really concerning are often indicative of late stage or Advanced disease um so let's go to the really triggering or big warning signs anybody Who develops new jaundice so a yellowing of the eyes or a yellowing of the skin um that could be indicative of a blocking of the pancreatic duct um now that can occur due to things not pancreatic cancer but that certainly should prompt somebody to go go to their doctor um new onset diabetes in the adult population so if you're 50 60 years old you've been healthy all your life and you've got a new diagnosis of diabetes um that should trigger a conversation with a physician of why that's happening um uh and then some of the non-specific and weight loss um those are I think the so sudden onset of weight loss that's unexplained so somebody's who's not trying to diet are on a program and all of a sudden uh notices significant weight loss that's a big um kind of tip off of possible pancreatic cancer um some of the vaguer ones abdominal pain you know um sort of dyspepsia or difficulty tolerating Foods or getting full earlier um are things that again should prompt the discussion with the doctor um but could be pancreatic cancer but there's a lot of other less serious things um that those symptoms could be related to great and just people need to be their own best Advocates when something isn't right and you know it's not the way that it's always been you need to ask questions um there is currently no standard early detection test or screening method for pancreatic cancer like a mamogram or a colonoscopy why is this and why is finding a way to detect pancreatic cancer earlier so critical I think you know it's a great question and I I mean I wouldn't say there isn't a great test right now for early pancreatic cancer DET detection because there are actually approaches that we're using and we can talk about this when we talk about the higher risk populations that are being investigated um including endoscopic ultrasound and abdominal Imaging with CT or MRI um but there you're right there's no standard screening test for the average risk population right so mamography and colonoscopy that we say everybody should get this at the at you know at a certain age we just don't have a grade test that is applicable to the entire population um right now but there's lots of work being done in this space um so the Imaging exists as I mentioned um but there's also a lot of work being done at peripheral blood-based biomarkers so blood tests that are being studied right now with the hopes of picking up cancer early um and an answer to your other question which is why is this so important um one of the biggest problems with pancreatic cancer is that it's often picked up at late stages um and as many people who are listening to this already know that pancreatic cancer is a devastating disease um and that's really because most pancreatic cancer diagnoses occur at stage three4 when it's Advanced and already spread and when our treatments don't work so one of the things that's really important and could be kind of a game Cher for pancreas cancer is if we can pick up p cancer early so stage one when it's surgically receptable or even um in the precursor stage um so there are precursor conditions um that to pancreatic cancer if we could figure out how to pick up those high-risk lesions and intervene before they actually become pancreatic cancer that's really what the community would really like um and again there's a lot of work being done in this area right now yep and everything you say you know there is no test for sort of the standard individual um to get tested for pancreatic cancer is why people understanding the symptoms and the risk factors is so important so that people can be aware and be again their own best advocate so much of your research Dr single focuses on developing better ways to assess people's risk of developing pancreatic cancer so let's start with what makes somewhat at high risk for pancreatic cancer so high risk I think this is where a lot of the advancements have also happened in pancreatic cancer I would say in the last you know 5 to 10 years and what we really understood is about 10% of patients have an inherited risk predisposition to develop pancreatic cancer um and what we know is that there's a slew of genes that you could be born with um that increase and make you at higher risk for developing pancreatic cancer the most common ones are are genes that people will know um brca 2 is the most uh commonly associated but braa one um is a gene that predisposes women to breast and ovarian cancer but also predispose increases somebody's risk of developing pancreatic cancer um there are genes associated with a syndrome called Lynch syndrome that have been also associated with increased risk of pancreatic cancer and there's a you know a bunch of one so the important take-home message for somebody in the community is that you have to know your family history of cancer and again as you we talked about symptoms that's actually a symptom right it's not a physical symptom but it's a symptom in your history that should be discussed with your doctor um and more and more what's being recommended is that if you have a family history of some of these Associated cancers you should strongly consider genetic testing to see if you're at elevated risk the other piece of this that's changed in the last five years is that if by chance um there is somebody who's newly diagnosed with pancreatic cancer um the national um Comprehensive Cancer Network which is called the nccn um it's the sort of you know the body that gives advice to clinicians or recommendations for how people should be treated the recommendations by NC CN is that every new pancreatic cancer case um every patient should undergo genetic testing so that should be part of the advocacy too is that often when there's a new diagnosis of a cancer rightfully so everybody's talking about surgery and the treatment and all the other aspects that go along with treatment what we can't forget is thinking about well was there something that put this person at increased risk and so genetic testing really should be part of every new pancreatic cancer diagnosis um kind of treatment plan per se great and it really is amazing how much new information we know today um about who as is at risk and much of that is a credit to our many supporters and donors who are watching today and we're so grateful for their continuing to help us accelerate progress and if anyone has any questions about getting genetic testing if you are a patient or if you are a family member you can call Pan can patient services to learn more so Dr single you co-lead a steud focused on improving access to genetic testing in black and lat latinx communities why is it important to focus on black and latinx communities it's a great really really important point in pancreatic cancer I think one of the things that we know similar unfortunately to other cancers as well that um the outcomes with pancreatic cancer uh both in terms of stages that diagnosis um and uh treatment outcomes are worse in underserved populations um so specifically in black and latinx populations we know that people are diagnosed later um and they do less well with therapy um and there's it's a multifaceted sort of you know multifaceted reasons for why this occurs but one of them is definitely that people are not taking advantage of genetic testing as we spoke about or the cancer screening and surveillance that are options for high-risk populations um particularly in the underserve populations um so we actually did a study called generate um over the last four years um that looked at making genetic testing easier um and through remote methods um and the way that study was designed was that people who had a family history of pancreatic cancer could contact the study consent online and get a blood test kit or a saliva test kit sent to their home and get the genetic testing and the results conveyed to them remotely and what we saw in generate was that we had tremendously High uptake um in the in sort of a big swath of the population across the us but what we saw was actually very low recruitment in the under representative minority groups that we spoke about so in black and latinx populations there were still very low uptake um of testing um and so I think and when we went to the community and said please help us understand can we develop ways to improve this they basically said you have to get to know our communities you have to build trust to make sure that our community members feel like you have something to offer and you have to make sure that you can reassure our population that they can actually get the screening that they need if they need it right um so again that's multiple different points that we have to address and it's our responsibility to address and that's why I think that's you know we're very grateful to penen for their support of the next phase of these studies called regenerate which is really stands for promoting racial and ethnic Equity um in genetic testing and risk assessment um so it's really a big Focus for us and for the entire Community going forward well thank you so much for this really important critical work that you're doing and of course panan wants to learn from it as well and help us think about how do we reach out to different communities um to talk about their risk and ensure that they know about the services that panan can provide to them so thank you Dr single so Dr Sears thank you so much for joining us today um we want I want to talk with you about what makes pancreatic cancer so difficult to detect early why is this the case and can you talk through some of the challenges yeah hi thank you um and I appreciate the opportunity Julie to talk to you today and to your um audience um so I I think Dr single really um said this uh really well in her uh discussion of of the challenges of of un detecting pancreatic cancer and and that is you know very simplis Ally the organs deep in your abdomen so you don't really you know it's it's hard to realize there's something wrong um you know the diffuse abdominal pain people get it from gastritis you know you ate something wrong whatever there's a lot of reasons to ignore diffuse abdominal pain um sometimes unexplained weight loss is a is a part of the of the journey and and that is um sometimes people are happy about that they say oh I've been losing weight lately you know and so I think people just I think the awareness is so important to bring up the awareness and that's where panen is doing such an amazing job of of that and um that includes not just awareness in in the general population but awareness in community with Community doctors and hospitals and and so people are on the lookout for this because you know as we all know it is on the rise as opposed to all the other major cancer types so um I think becoming aware of what all these symptoms that Dr single spoke of is is going to be incredibly important um I do think that you know there are um there are issues with underserved populations as as Dr single mentioned and um I just wanted to also bring up the um Native American population um the state of Oregon where I live um there's a um a large Native American populations here in different tribes and they have about a two-fold incidence of pancreatic cancer and increased mortality from it and um identifying how best to get these kinds of underserved populations um into screening is really um challenging and something that we absolutely have to pay really close attention to um and so I think that that's okay you know as we talked about you you know there are high-risk genes um and um there are highis um populations and but we need to figure out how to reach out to the communities to find to find those people and let them know about about screening and I think a lot of pan Ken's efforts are directed in that way y well thank you for what you're doing there um in Oregon so Dr single talked about this a little bit but what are the best diagnostic tools and tests that are available today yeah thank you for the question the um you know right now if if you come in with abdominal pain you will probably possibly get a endoscopic ultrasound which is a way to to visualize your abdomen and the different organs in it um it's an invasive procedure it's an expensive procedure um if something is seen they will take what's called a fine needle aspirate so a small biopsy um of what they think there may be seeing on the Imaging but the Imaging is not not very fine you know it's it's really hard and and so even the What's called the endoscopic ultrasound final aspirate has about an 80% sensitivity and specificity for for actually finding if you if you do have an early stage pancreatic cancer so it's it's not great and it's invasive and costly so we really need to come up with better ways especially if it's really going to be more about screening somebody's going to be in a long-term screening you can't have them doing that kind of thing all the time so um right you know the the most the non-invasive ways of screening is with a blood test or a urine test or different types of liquid biopsies and then there's there's you know new ways that we can maybe do imaging like with a with a a magnetic resonance imaging an MRI or a CT scan that you could get in the hospital that would be noninvasive um for the um the Imaging just to touch on that briefly because spend a little more time on the liquid biopsies the Imaging people are working really hard on on improving the um physics of the types of Imaging that you would get when you get body Imaging and and even using um uh machine uh machine learning or artificial intelligence to try to like pull out textural features that might be seen in those images that um the naked eye wouldn't be able to see and so that's that is something that I think could have a lot of Promise in terms of liquid biopsies maybe many of the audience have heard of the the M say which stands for you know multi-cancer early detection so there's blood tests that are kind of out there to say oh you maybe have something going on you maybe have a Cancer and some of them can use some of the molecules they're detecting to say well maybe it's this type or it's that type but um I think for pancreatic cancer those tests well they maybe will have a role in directing you to a more specific test at least in my opinion um they're they're a little bit too non-specific for pancreatic cancer at this time um but they could direct you towards a more specific uh blood-based um test and there are a couple out there um there's um these tests generally what they're trying to see is they're trying to see like molecules in your blood DNA or RNA something that could be release from the tumor there's also tumor cells also release something called extracellular vesicles they release these little uh ve vesicles from the from the tumor cells and so um there's all these different things you can detect and then the question becomes how do you detect them how do you how do you capture them and detect them and and there are some some new um devices Technologies there out there to collect these and then people that are working on you know panels of specific molecules that they're looking for and so there are some things on the horizon that I think look very exciting um one of them is from biological Dynamics called their exova platform that detects these little EVS another one is um from Clear note Health where they're looking at DNA methylation States um and so those are just to name a few there's a lot of people working in this space um I do think the the most promising ones have a sensitivity and specificity that's above 90% which is better than the gold standard e FNA um that I mentioned in the beginning is what you would normally get in the clinic so I think we're getting there um with blood tests and imaging great well yes I mean it is exciting to hear the volume um of um activity that's happening in this area um and if people have questions about any of the tests that you've mentioned they can call panc can patient services to learn more so Dr Sears you know we've been so proud um to to work with you over the years and just continue to watch your research grow so what research related to early detection of pancreatic cancer is particularly exciting to you right now yeah thank you for asking so to me um I think it's been a process of the scientific Community understanding the biology of early pancreatic cancer disease and how it develops and then understanding the types of molecules that can be released and one of the ones that I'm particularly very excited about are these extracellular vesicles these little vesicles that get given off by the by the tumor cells because the vesicles actually contain they're like a little mini package of all of the things going on in the tumor cells they contain DNA and RNA and protein um that are representative of those tumor cells um the problem in the past has been that that you can't collect them very easily but there's a new technology that biological Dynamics came out with um called dielectrophoresis and they actually use alternating current AC current like you might have in your house to to to create a field electrical field that sucks these little EV particles out of the blood and so from a very small volume of blood like a few drops you can suck out these EVs and then you can like look at what's what's packaged in them and whether those are cancer specific um proteins and so that's one of the things that I'm I've has caught my attention and I'm very excited about watching they did get FDA breakthrough device designation for it um and then the the only other the other thing I'm I'm kind of excited about is new Imaging and um some of the AI um things that people are working on where like texture it's almost like you take the tumor and you or the or the early you know your pancreas and it might have an early early cancer in it and you use like cartoon software where you you know you change it and and you make you kind of blow up all of the little abnormal parts and then the AI can find them easier and so there's some really Innovative things that I think people are doing in imaging with AI that I that I think coupled with you know you kind of go through this process right maybe you have an M set and then you have a more specific blood test and then maybe you can get some Imaging and so um that those are the two things that I'm excited about oh and one more thing sorry the Outreach that that Dr Singo talked about first this this Outreach to the underserved communities it's just unacceptable that that you know when when I'm part of a lot of um of of several efforts including with with panan of of getting bringing together patients from high-risk clinics and when you look at the data it's it's the diversity just is not there in in people that are in in screening and so I'm I'm really hoping we can make a big impact there well thank you yeah I mean the Technologies is really cool some of these things that um will help us hopefully to detect cancer earlier um and yes reaching all of the people that are impacted is so critically important so Dr SS thank you so much for for all that you do for for our patients Dr Koma Deone um let's talk about Imaging what Imaging tests are currently available to detect pancreatic cancer and what should people know about these options thank you Julie uh thank you for having me here and letting me share my thoughts on how Imaging can help fight this terrible disease uh it's such a pleasure to be here and listening to Dr cers and Dr single they shared some of the Imaging tests I think uh Imaging uses various methods to take multiple images or pictures to see what's going on inside the body now there are very different Imaging tools which are available to detect pancreatic cancer and these include ultrasound CAT scan or CT scan MRI scans or pet scans the current preferred imaging test for diagnosing and staging pancratic cancer is a multiphas pancreatic protocol CT which is a dedicated scan which takes pictures of of the pancreas after in injection of an iodine based Dy now this scat scan just like any other scan uses traditional X-rays and some of the newer scanners which are available now can do this exam in a a few minutes Mr of pancreas can also help detect pancreatic cancer and it uses a powerful magnetic field with radio waves and computers to produce detailed pictures of inside of one's body uh an MR scan usually takes around 30 minutes and also requires injection of a d similar to that of a CAT scan now our gastroenterology colleagues as Dr spear spoke about use a different test called as endoscopic ultrasound which is a medical procedures which combines endoscopy with ultrasound to look at the pancreas to help detect pantic cancer now an advantage of endoscopic ultrasound is that the endoscopist in addition to taking pictures of the pancreas can also take samples of the tumor which the pathologist can then look under the microscope to confir confirm the diagnosis of pancratic cancer of course endoscopic ultrasound is an invasive prod procedure and requires anesthesia great thank you so much and you know we Dr Sears talked a bit about some of the groundbreaking tools especially things using artificial intelligence which I think a lot of people in the research Community are excited about when you think about the future of Imaging for pancreatic cancer what are you particularly excited about yeah certainly I think we are living in very exciting times uh the emergence of artificial intelligence I think has opened up new opportunities for early detection of many cancers including Panic cancer now particularly in this malignancy early detection is key because it helps improve the poor overall outcome in this cancer because as the tumor grows in size spreading to surrounding organs and vessels the outcome becomes worse now two advances I think in the past few years are likely going to have significant impact in the early detect of ptic cancer first is the rapidly evolving field of radiomics which involves extraction and quantification of features within medical images which are Beyond human perception now what radiomic does is it captures tissue characteristics like heterogenity shape and using in combination with other data such as genomic or hystological data can be used for problem solving now the challenge with application of radiomic in routine practice is that it it allows generation of a large number of data which is difficult from a human perspective to handle that data now the phenomenal growth in artificial intelligence which is the second Advance allows one to handle that large amount of data so if you combine radio mix with artificial intelligence that's a very powerful tool in fact recent Studies have shown that when you combine radiox with artificial intelligence it can detect pancreas to cancer from normal pancreas on Imaging when it is beyond human perception capability and also at a substantial lead time before clinical diagnosis so these are very promising results however we need large prospective multicenter studies before clinically applying these tools and I think one set study is early detection initiative thank you yeah no it's it's pretty exciting what is possible in in the future and as you said we just need to bring lots of um experience experience and data together so that we can um better understand how to use it so Dr coma Deone you um have an important role in pan canan's early detection initiative we're so glad to have you as one of the co-principal investigators for our study can you talk a little bit bit to our viewers about what is the goal for the panan early detection initiative I'm really thrilled to be part of the early detection initiative which I think is an important step in addressing the critical need for early detection of this cancer uh to improve outcome in patients who are affected by this terrible disease now early detection initiatives are multicenter study and its primary objective is to determine if intervention in subjects with new onset diabetes can result in earlier detection of ptic cancer we know that up to 1% of uh patients who are over 50 years of age and who develop biochemically defined diabetes they have been diagnosed with pantic cancer within three years of meeting the not criteria or the Nuance diabetes now that is a six to Eightfold higher risk compared to the general population so in this study uh the objective is all the study participants will be randomized either into an intervention arm or an observation arm so those in the intervention arm will be risk stratified using an impact score and those who have a score of over zero will be approached for ined consent and those those subjects to three will get a blood sample and also get a pancreatic protocol CT of the abdomen now if the scan shows significant abnormalities in the pancreas or other organs the patients will undergo clinical workout for those abnormalities according to standard clinical practice and if the scan is negative or indeterminate and they will be followed up according to research protocol with a repeat scan in 3 to n months all subjects enrolled in the study will be F followed for five years to look for development of mang cancer now till date this study has been open for enrollment for two years now and we have actively randomized nearly 3,800 subjects and consented about 120 of them we have nearly 150 Imaging studies which is available for analysis and I'm really excited about what the results would show and help us detect pancreatic cancer early and also use some of the tools like artificial intelligence and radio mix to see if we can detect can answer early before it is perceptible to naked eye terrific and thank you so much for the important role that you're playing in this study and for our audience just a reminder that new onet diabetes is potentially an early symptom of pancreatic cancer and again why we want people to pay attention to that and talk to their doctor if that's what they're experiencing so Pamela it is always a pleasure to um speak to a Survivor Pamela is a 12-year pancreatic cancer survivor as I said um thank you for being a part of our change the course campaign as an ambassador can you tell us a little bit about your story when you were diagnosed in your journey so far yes definitely thank you for having me I am so happy to be here I was in my third trimester I was pregnant and in that third trimester I was hospitalized I'm going to say five to six times with pancreatitis to treat pancreatitis in case you don't no you get an IV and you don't eat for two to three days so that happened four or five times after I had my baby I had an endoscopic ultrasound the ultrasound didn't show anything a couple months later I was traveling to Florida for business and while I was there I had this excruciating pain it felt like something was trying to move across my stomach and something was blocking it during that time you know you can get Norco so I had Norco I would pop a Norco and you know keep going that didn't last for long the pain was so excruciating I was going to get on a plane to try and make it home to get back to my doctors and U my husband said no stay there just go to the hospital there while I was there they did a CT scan that showed uh a mass at the head of my pancreas and they said oh it's probably pseudo cyst you're so young it turned out to be asinar carcinoma uh it's one of the more R forms I believe of pancreatic cancer and they told me you need to get home and you need to get this out as soon as possible so fortunately my husband I kind of retreated you know and went into hiding but he did not he did a lot of research and he found pan can for us and once he found that I was signed up with the patient services and um really started prepping for was coming next so I had a Whipple um after my Whipple I did six months of chemotherapy combined with I'm going to say six weeks of um radiation uh I was prepared for this chemo and radiation I have to say because uh there were so many resources on pan can's website regarding different medications treatment options so it wasn't as scary going in I had a feel you know talked to some folks so I was you know ready to go so after I did my uh Whipple radiation chemotherapy 4 months later I was coming down the stairs at home while my husband was walking in front of me and he stopped and he said what's wrong with your stomach so I'm a very petite person I always have been and I said I don't nothing and I started thinking and he said you better not be pregnant it turns out 4 months after I fin finished chemo and radiation I was pregnant I went to my OB she said oh my God what are we going to do there's no textbook there's nothing I don't know how to treat a pancreatic cancer survivor that just finished chemo and she said you know what it's probably just a fluke probably no heartbeat there was a heartbeat so I went to the high-risk OB the high-risk OB came back to me and said well lady you're just a a woman over 35 that is pregnant with a healthy baby girl so I um delivered my daughter her name is nia nia that means purpose in Swahili she was born on 121212 at 1314 and she and I are both thriving it's just unbelievable I feel um so amazingly blessed but it is that is my story wow what an amazing inspirational story thank you so much for sharing and yes you've got a little miracle there to remind you I guess every day of of your your courage and strength through all of that so you've been a strong advocate for awareness of pancreatic cancer in the black community can you talk about why that in particular is so important to you what do you want people to know about that oh definitely um so when I was diagnosed with pancreatic cancer I actually had no idea what where my pancreas was quite honestly and I'm saying that and I have a master's degree in healthcare and so I it when you look at the African American in particular I've had a chance to work with them from a community uh support perspective there is a fear of the doctor for it I'm there's a a huge fear there's uncertainty and then people really don't understand how important prevention is so to be on this webinar and here the uh Physicians talk about you know the awareness and and the efforts I am so excited about that I think that's what we need we need more ground root efforts to actually talk to people where they are and a big part of it is as the community said you have to have folks that uh look like them and speak like them and really kind of understand the history and where they're going through or or and if they don't look and speak like them then you have to have people that are and that they can feel the sincerity and I think that is exactly what pan can is working on which is exciting and I hope to be a part of that as well well thank you for being an amazing Ambassador and helping us um to communicate imp particular to the black community um you know and really use your story to tell people why it is important to pay attention to their bodies so as a 12year Survivor you've talked about how important it is to be your own Advocate and of course p can advocates for that as well what does being your own best advocate mean to you and how can being your own best Advocate help people who might be at higher risk of developing pancreatic cancer definitely uh there is and I'll tell this from this perspective I went to the doctor with my dad and um I wanted to ask the doctor a question my dad said no don't ask him he's a professional you know you're gonna mess it up you know so there's that thing where you're not sure being your Advocate means you're going to speak up for yourself regardless who you're talking to if you feel something that is abnormal or ache and a pain you need to start having conversations earlier than later and not letting letting it progress so if you see something I'm in compliance so see something say something I think it applies here as well if you feel it please speak up that's the that's the biggest thing you shouldn't walk around with pain um in general great thank you yes and it's such an important advice no single physician can know everything about everything right and so um you as as patients we as patients and individuals need to be our own best advocate so thank you for for making sure that people understand that and helping us um tell that story so thank you Pamela you're you're an inspiration um to all of us so Deb I'm going to turn to you you're one of of our amazing uh case managers in our patient Services Program you and your team are on the front lines every day providing critical information and resources to people with pancreatic cancer and their loved ones as we've discussed there's no standard early detection test or screening for pancreatic cancer so for those who are at higher risk of developing pancreatic cancer what prevention measures are recommended and what can people expect when beginning these conversations with with pan can's patient Services Program thank you Julie it's great to be part of this discussion and uh these are very important conversations to have for those considered to be at a higher risk of developing pancreatic cancer it is recommended that they have annual Imaging scans beginning at age 50 or sooner depending on their individual circumstance enrolling in a surveillance program sometimes also called an early detection or screening program may also be an option in these programs doctors actively monitor at risk individuals with various Imaging tests that were discussed earlier such as CAT scans MRIs and endoscopic ultrasounds high-risk individuals who do not qualify for or who are unable to participate in a surveillance program may also consider surveillance using these Imaging studies that can be be performed by a gastroenterologists specializing in disorders of the gastrointestinal system pan can maintains a database of these Specialists and can provide a listing of requested areas great thank you so much it's really important information and to be able to provide information in Lay terms to people is sometimes you know really CR critically important um we heard from Pamela just how important pan canp patient services was during her journey how do case managers help people understand the more complicated aspects of early detection like for example who should pursue genetic test in and whether their insurance can help with the cost so our case managers here at panin are highly trained in early detection options and genetic testing information they can provide information and resources to assist callers based on their needs and if one expresses concern about whether they should obtain genetic testing we can inform them of the circumstances that may put them at an increase risk for developing the disease it is important to note that as was said earlier as well only five to 10% of people with pancreatic cancer have inherited a genetic mutation from their mother or father that increases the likelihood of developing the disease Simply Having a family history does not mean a patient or person will develop pancreatic cancer as there are many other factors that play a role in cancer growth however some risks do include having one or more first degree relatives such as a parent full sibling or child who have pancreatic cancer a first ree relative who developed the disease prior to age 50 or having an Associated inherited genetic disorder or syndrome the risk increases if more family members are affected with pancreatic cancer but if someone has a family member with pancreatic cancer and they have received genetic testing for inherited mutations negative results often mean they do not need to get genetic testing if the results are positive unknown or if they have several close family members with cancer panin recommends Consulting with a genetic counselor as was also said earlier regarding insurance coverage of genetic testing we would encourage patients to contact their insurance companies directly to determine what their individual coverage may be patient services can also provide additional information on available financial assistance options if needed great thank you so much it can get pretty complicated so again if people have questions about anything that you've heard you can call pan can patient services to receive materials or have a discussion with the case manager so Deb one of the most important ways people can keep up with their health is being aware of the signs and symptoms of pancreatic cancer as we have been discussing when people who are curious about the early warning signs of pancreatic cancer contact pan canc patient services what do you tell them so we let them know that pancreatic cancer may cause vague symptoms that could also be covered could be caused by different conditions several symptoms that may indicate pancreatic cancer include jaundice which is yellowing of the skin and eyes with or without itching sudden unexplained weight loss recent onset of diabetes in people over 50 as we've discussed or for diabetics a sudden change in blood sugar control pain in the back and abdomen loose watery oily or foul smelling stools digestive difficulties such as indigestion poor appetite nausea and depression this is only a partial list of symptoms that could occur in a patient with pancreatic cancer it is also important to note though that P patients diagnosed with pancreatic cancer may not have any symptoms and having one or more of the symptoms I mentioned doesn't mean that a person has pancreatic cancer so if someone is experiencing one or more of these unexplained symptoms we urge them to speak with their doctor and as also mentioned previously P patient services maintains a listing of gastroenterologists who specialize in the diagnosis and treatment of pancreatic cancer if you're interested in receiving a list of Specialists or if you'd like to speak with a case manager about the early warning signs of pancreatic cancer please contact patient services as we've said SE self- advocacy is very important in taking an active role in managing your health clear and open communication with your Healthcare team is crucial to receiving Good Health Care great thank you so much Deb and I think just emphasizing again and everyone needs to be their own best Advocate learn the signs and uh the symptoms and the risk factors um and be aware of what's going on with with your body and of course call Pan can patient services if you have questions thank you Deb for what you and and our team do with for patients and families every day Pamela thank you again for sharing your story you're an incredible inspiration and a reminder why um early detection and understanding your risk factors is is is really important and to our three researchers you know thank you so much for sharing all of this important information with our community um and just for you're all actively working in research um to accelerate progress in this particular area and we're so grateful for everything that you do so thank you what a wonderful panel um really appreciate you all being with us today it was great yeah thank you awesome thank you so much tor incredible panelists for taking the time to share your stories and expertise today and thank you all for joining us you will help change the course of pancreatic cancer with us here are three easy steps you can take visit pancan.org change the course to learn more about pancreatic cancer risks symptoms and early detection make a donation at pancan.org to support pancreatic cancer research funding free services for patients and Families and more join your community and fundraise for the cause sign up for a pan cam purple stride walk in your area at purpl stride. org we're thrilled that television personality Maria manuno is partnering with panan to change the course after being diagnosed with a pancreatic neuroendocrine tumor Maria credits early detection with putting her on the path to surgery with a good prognosis now she's joining other members of our community including today's panelist Pamela Jackson to use their voices to raise awareness of signs and symptoms and the need for an early detection method let's take a look I'm Maria manuno earlier this year doctors discovered a mass on my pancreas our father passed away from pancreatic cancer my doctor did a CT scan and that's how they found my cancer I didn't know that black Americans have a higher risk of pancreatic cancer November is pancreatic cancer awareness month and I partnered with panan to tell tell you that early detection can save lives change the course by knowing your family history change the course by recognizing your symptoms change the course by knowing your risk and advocating for your health change the course today by visiting pancan.org remember that PanAm patient services provides free support and resources to help patients and caregivers navigate any of the questions we didn't get to today contact PanAm patient services and a case manager can help you from all of us at panan thank you for joining us this world pancreatic cancer day I hope everyone has a wonderful holiday [Music] season

Channel: Pancreatic Cancer Action Network

Views: 3,006

Keywords: pancreatic cancer

Id: WjyLjC4o4ZI

Length: 49min 54sec (2994 seconds)

Published: Thu Nov 16 2023