The Angiosarcoma Project

Joel Nowak talks with Dr. Corrie Painter. who is an eight-year Cancer Thriver with Angiosarcoma, a very rare and lethal cancer of the interior of the blood vessels. 

Dr. Painter is a researcher with the Broad Institute of MIT and Dana Farber. She is instrumental in designing and executing the Broad’s research project, The Angiosarcoma Project as well as their Metastatic Breast and Metastatic Prostate Cancer Projects. 

Dr. Painter shares her heart wrenching story of being diagnosed with Angiosarcoma, how she made her treatment decisions when there was no treatment available that had demonstrated any effectiveness in treating her cancer, and how she searched out others with the disease to find that many were no longer alive. 

Dr. Painter, who is an outlier, has been involved in the development of the Angiosarcoma Project that is a patient driven project that is defining the genetic map underlying Angiosarcoma and its potential treatments. 

The project is recruiting others with Angiosarcoma to participate by going to the website at www.ASCProject.org and clicking the “Count Me In” button. Cancer Thrivers who are counted in will be asked to contribute, from their home, blood, saliva and tissue samples for genetic sequencing as well as signing releases for the project to obtain their medical records. The project will map the genetics of Angiosarcoma and learn about how it relates to drug therapy and treatment efficacy. 

Cancer Thrivers who are “counted in” will receive regular updates on what is learned by the project.

To be counted in go to the site at www.ASCProject.org and clicking the “Count Me In” button. 

WARNING – Dr. Painters story is very informative, but will pull your heartstrings.

Read a Transcript of this Podcast

Transcript

Joel Nowak: Welcome to this Cancer ABCs, a podcast as well as many other resources we offer on our web pages, CancerABCs.org are always available free of charge. Today, we are speaking with Dr. Corrie Painter of the Broad Institute. The Broad Institute is conducting a number of cutting-edge cancer research projects. The project which we will discuss today with Dr. Painter is the Broad's Angiosarcoma project, welcome back Dr. Painter, thank you so much for joining us. Before we jump into the angiosarcoma project, I would like to have you take a few seconds and tell us about the Broad Institute and the many different involvements that you have in cancer research at the Broad. 

Dr. Corrie Painter: Thank you first for inviting me to become part of this podcast. It's a great honor to be here and to talk to so many new people about both the Broad and our projects, and in particular, the angiosarcoma project. The Broad Institute is a 50123 non-profit that is empowering a revolution in biomedical science to accelerate the pace at which the world conquered disease. The Broad Institute is a mission-driven community that brings together researchers and medicine, biology, chemistry, computation, engineering, and mathematics from across MIT, Harvard, and Harvard-affiliated hospitals along with collaborators around the world. We tackled very large problems in biomedical sciences and have very large part of that focused on cancer research typically involved with are the patient-driven research projects such as the metastatic breast the cancer projects, the angiosarcoma project, and metastatic prostate cancer project. 

Joel: I'm actually wondering why is this particular project, the angiosarcoma project, so important to you and what are you hoping that the Broad and your time and your work will actually learn about this cancer. 

Dr. Painter: It's a great question. There are several reasons why I'm so passionate about this particular project. Just about eight years ago, I was getting ready to graduate with a Ph.D. in Biomedical Sciences when I found a lump in my breast. My worst fears were that I had breast cancer, but it turned out that it was something much more insidious and very very rare, it was angiosarcoma, which is a cancer that only hits about 300 people per year. Needless to say, as a scientist, the reality  was right there in front of me that I would never be able to conduct any research of my own that my own experiences would go unrecorded, that there was no real democratization of cancer research and because I was on the fringes and with having something so incredibly rare that not only can I not study myself but nobody else would ever study me, and no progress would likely be made. Very very daunting to have those realizations and to have enough scientific knowledge to truly understand the grave reality of this disease that most people do not survive. If you look at a Kaplan-Meier curve which shows the survivability of a disease over course of time, most people that have an angiosarcoma diagnosis are gone within the first five years. There's only about 20 percent of people who actually survive that long. Being eight years out, I'm part of that very small population of people. It's my life mission to make sure that we get more people included in that small population until that small population becomes everybody that's ever diagnosed with this disease. It's been really important to me to try to drive this research, and to see where we sit into the larger ecosystem so that any lessons learned from our efforts in angiosarcoma can be broadly applicable to other cancers or other processes that can be implemented for other cancers, so that we can become part of the much larger problem of how to tackle cancer in general.

Joel: I too have a rare cancer, I think you kind of touched on the meaning of having a rare cancer, the lack of research, and having to face that diagnosis and making decisions with very little research. I know I found it particularly frustrating, I'm curious if your experience was somewhat similar?

Dr. Painter: Everything about this has been both frustrating and heartbreaking from the very beginning, and it is just the lack of knowledge that surrounds something when you have something so incredibly rare. Nobody has any idea what to do with you. There is no standards of care; there is no oncologist that can say, "We are going to try XY and Z." And, I was handed a piece of paper that my oncologist wrote on with a pencil and said, "Here are seven different types of chemotherapies, none of them have any data to suggest that they work. But if you wanna look at your children and say that you tired, pick one." That was my introduction --my own experiences with this disease and it was a lot of frustration around the fact that I was very naive and I assumed that the medical community should have context for this, and should have knowledge to guide me and it's not their fault that they don't have knowledge to guide me it's --it's not anybody's fault. It's just awful chance happenstance by having something so incredibly rare. So I feel both just a bittersweetness of being in a position where I can try to effect the change here. Bittersweet because I feel like there are so many people who did not get the opportunity. Bittersweet because I know that no matter how hard I tried it will still be a long road home, and also that I may try really hard and not be able to actually implement the change just by virtue of the fact that so few people get this. I think now that I've been working on this particular project which will talk about the details of which in a minute, I think that last point though is not gonna be a long-lasting feeling. I do think that we are gonna make a difference, I think we already are, and I think people are starting to look at what we're able to do even with just a few loud voices and to see the value of this research and what it can mean for our population and others, I think there will be a turning of the tide.

Joel: That's amazing. If I could ask you, I know that a lot of people have rare cancers do face a similar frustrating situation where there's really no evidence that helps direct decision-making. So, here you discuss having been handed a piece of paper with seven different drugs mentioned and also being told that there's no evidence that any of these will gonna be helpful. How did you feel about that? And also, how did you go about making your decision?

Dr. Painter: I was completely devastated. I was shocked and devastated. I really took for granted that there were even limits to what was knowable by the medical community because I think until you're faced with some type of crisis, there's a narrative out there that doctors know everything and that scientists have figured a lot of stuff out and it's just not true. We are really trying even the medical community, we hope to know everything, we hope to know what's going on but to the reality is not reflected therein especially when you have a very very rare cancer. So, I was just devastated, and I didn't have anything other than my very raw emotions to make any decisions with, and so I looked at that piece of paper and I just randomly picked a combination therapy cause I --I thought, okay, well here's one more --there's two drugs and --two drugs must be better than one, and that was the rationale based on absolutely nothing. So, I ended up going on a regimen of gemcitabine and paclitaxel.

Joel: You actually --we probably got a little ahead of ourselves because angiosarcoma is a rare cancer. I think there are probably people listening who really don't know anything about it or what it is. Would you just --kind of give us a thumbnail description of it?

Dr. Painter: Oh, of course, yes. I also had never heard of angiosarcoma before the day I was diagnosed with it. Angiosarcoma is a blood vessel tumor, it's the very inner lining of the blood vessel called the endothelial cell. So if you think of a blood vessel like a hose, the very inner lining of that hose with the --the endothelial cell --it's the cells that are in constant contact with your blood. So, unlike other cases of tumors that start in your tissues that have to figure out how to invade the tissue, crawl to the tissue, find the blood vessel, break the barrier to get into the blood vessel itself in order to spread, angiosarcoma's already there. It's already there. So, ahead of the game in terms of being able to spread. The vast majority of people that are diagnosed with angiosarcoma are diagnosed in the advanced setting, meaning that it's already spread beyond the location where it arose, which makes it exceedingly difficult to treat, just like any cancer once its become metastatic --very challenging in the course of the spread can be very very rapid for angiosarcoma. Ironically, before I went to get my Ph.D., I worked as a technician down at Vanderbilt, and my primary responsibilities was making primary cell cultures of endothelial cells for studying the cardiovascular system. I knew everything about the biology of endothelial cells, and when I was diagnosed with angiosarcoma, knowing the type of behavior that these cells can undergo, it was just compounded in terms of devastation that it --it took on me.

Joel: Talking about coincidences, that's unbelievable, probably when I get back will be to the project itself. I know you mentioned that patient engagement is a very important part of the project. Can you talk a little bit about what is patient engagement specific to this project and what are the added values that it bring? 

Dr. Painter: Oh, I'd love to, if I could just take a minute and just talk about our angiosarcoma Facebook support group, this is where everything started for me, and it's the reason I'm here at the Broad --it's the reason why I'm involved in any of these projects even beyond the angiosarcoma. I need to describe the impact that this patient group has had on me and how it has made me so appreciate the value that patients bring to the table when thinking about biomedical research that will directly impact their lives. When I was diagnosed, the first place I went to find information was PubMed which is the clearinghouse of all known medical literature, and I looked for information in angiosarcoma, and there was almost nothing there. There were case studies that described the long-term survivors who made it a full year and all of these awful other tiny bits of information that people had published on the disease. The next place I went was Google, I was looking just at that point I knew I couldn't find science but I wanted to find survivors. I think for me it was so important for me to know that somebody could survive this disease no matter what the rational science was telling me from PubMed, I just needed to find somebody, even one person who had survived this disease and I found them --they were at --they were there too looking for other survivors and so I would find their e-mail addresses and I would e-mail them and get nothing back. I had a haunting suspicion that maybe they were no longer with us, so I would e-mail and I would look for them and put the word of the theory next to their name and sure enough they would pop up everytime that these already passed from this disease and then just was like sinking into black hole despair. This is something I would definitely not survive. But then I went into Facebook and I typed in angiosarcoma and sure enough, there was a tiny little Facebook group started by a woman named Lauren Ryan who just had the foresight and vision to know --there needed to be a place for other to come. She had been diagnosed the year before and she started this group knowing that even if only one other person found her, that that could be their salvation and when I found them, there was eight people there all alive with this disease and they held the world knowledge of what you do with angiosarcoma, having a talk to your children, how do you deal in my case with the prosthetic breast, how do you deal with surgery and the side effects from chemo, what questions do I ask when I go to the doctor. They had been there, they had walked in my shoes, and they could tell me what to do, what to say, how to feel, how to think, and how to live with this disease. It really was a ray of light where there was nothing but darkness in --in every other aspect of my life. So that group and that we take down to almost eight years ago now has over 3,000 member and at any given time, there's between one and 200 living members with this disease. A lot of people have passed to their loved ones over a mean, a lot of people bring their entire care team to include distant friends, relatives, second cousins, you name it, anybody who thinks that they can learn from other people's experiences will join this group and try and help their loved ones and as a result, we have collected so much powerful information that when somebody joins, we can immediately tell them, "Hey, this is a list of doctors that have treated angiosarcoma. They know what they're doing. You can get a second opinion in this way, here's the contact information. Here's a link to the types of gloves you can put on your hands when you go into chemotherapy to try to offset neuropathy, to use the types of side effects you may get from different types of therapy is, this is what is on the cutting-edge in terms of research that may help you." The people in this group know all of that information and so when the newly diagnosed find us, they're immediately welcomes into the family and they have after disposal, at least a little bit of information that's been validated through people's personal experiences and it's because I've watched the evolution of this group and the information and expertise that patients and their loved ones have developed over time, I've realized just how much patients do bring to the table. Now, all the while, I'm a biomedical scientist with my other hat one and see the great disconnect between what patients know and can do with what researchers know and can do and so when this opportunity arose at the Broad Institute to be that bridge to --to help fill in the gaps --to bring patients directly into the field of research , I jumped so high and decided that when no matter what type of career I can have as a scientist this was way more important and would have way more impact than I could ever have as an individual scientist with my own lab and I'll tell you what, it was the best decision I ever made. I've been here now for about three years and we have three projects launched and the idea behind this project is to just cut to the chase, build the project --a genomics-based project on cancer in different types of cancers and just reach out to patients using social media, using the internet, using newsletter, using advocacy partners to make a very easy user experiences for patients to sign up no matter where they are, to participate by giving us consent that would allow us to obtain copies to their medical records --to send them a saliva kit so that we could collect a sample of their normal DNA and then to acquire any leftover tissue that they may have as well as a sample of their blood in order to do very large-scale genomic studies from anybody who wants to sign up in the United States and Canada.

Interviewer: That's pretty amazing. So, the tissue with angiosarcoma, you explained that was the --the lining in the blood vessel --, so that's the tissue.

Dr. Painter: Right

Joel: you're talking about, correct? You're not talking about the blood?

Dr. Painter: Yeah, it's --in the case of my own tumor, I was able to look at it under a microscope with the pathologist that diagnosed me, and he walked me through because mine arose in the breast --there was just breast princama tissue with these invading blood vessels. You could see these blood vessels just curling around the normal tissue and destroying it. Further --deeper into the tumor, it just looked like sheets and sheets of the endothelial cells with nothing else -with no other context around it. No other blood vessels, it didn't look like a blood vessel, it just looked like the individual cell kind of replicating itself with no actual structure, and so those were the malignant cells.

Joel: If you could first explain what the actual goals of the project are and then how someone would participate and what they would anticipate if they are participant.

Dr. Painter: Sure. So what we've done for the angiosarcoma project and the other projects, we build a website, and we do this in lock step with the patient community. For example, we have a Facebook group called Angiosarcoma Project Working Group, a bunch of patients are in there, some doctors are in there, some scientists are in there. We ask patients to take a look at the materials that we're gonna use to build the website and to make sure that it resonates with them. With their feedback, we build a website that would say is then just a URL link and they can go on that website, in this case, its ASCProject.org for Angiosarcoma Cancer Project, so ASCProject.org, they can just enter that URL onto their computer, read about the project, and then press a Count Me In button that will take them to a survey that asks some questions about their experiences with Angiosarcoma. After they submit that survey, it takes them to an online consent form that talks about all of the aspects of the research so that they can be fully informed about what it is we're doing and what our commitment is and what their commitment is. All of the risks that may be associated with the research project itself and/or their participation as well as the benefit if they provide inform to consent we then ask what hospitals they've been treated at and where their biopsies may have been performed. At that point, the patients can log off, we will follow up with them through social media and through regular e-mail updates to let them know the status of the project itself and what we're learning through the aggregate data, meaning not their individual tumor sample because we can't return individual results but what we're learning as a whole from everybody that contributed. We send patients a box with a tube, collect their saliva, and its self-addressed back to our genomics platform. So, they just provide a saliva sample and stick it back in the mail and then we, in some cases for angiosarcoma, somebody has active disease, meaning they did not say that they had no evidence of disease when they signed up, we'll send them a blood biopsy kit with instructions, also with self-addressed envelope to be sent back to us by FedEx. We ask if they will take this to their next routinely scheduled blood draw, so it's just a courtesy draw where they ask their phlebotomist to fill another vial for them that we provide, and then they stick that back in a box and just ship it back to us and it comes into our labs where we go ahead and process it along with the saliva, and then we have coordinators that will request their medical records, look through their medical records, find out how much issue they may have lost over from their procedures. If there's enough tissue, and this is a pretty critical, only if there's enough tissue. We will make a request for that tissue and do sequencing, comparing that patient's normal DNA that we'll get either from saliva or blood, to the DNA in their tumor in order to understand what's different in the tumor DNA. What might be causing that Angiosarcoma to arise, what maybe a molecular driver of the disease, what is it that might cause that disease to have spread and what are all the things that we can learn in order to get a genomic landscape of angiosarcoma?

Joel: Someone who has angiosarcoma was interested in participating would go to ASCProject.org, read through the literature on their, and sign a consent that would be online, I think that's what you had said and then and there would be a follow where their tissue may be located. The project itself would then reach out to the hospital or the clinic that --where the tissue's located and try to assess whether that tissue is viable for the project. Also, you'll be sending out vials where someone can provide some saliva, possibly blood and that you would then use the saliva or/and the blood and the tissue and their medical records that you mentioned and try to piece it together, is that kind of like this summary of what --I think that's what you said. 

Dr. Painter: That is --that --that's a very good summary, yes, that's exactly what the process is like. 

Joel: When did the actual project start?

Dr. Painter: Yesterday was our one year anniversary. So, we launched on 

Joel: Oh

Dr. Painter: March 13, 2017 

Joel: Congratulations on that

Dr. Painter: Thank you.

Joel: anniversary and 

Dr. Painter: Thank you, we're just a --yeah, we're just getting ready to release our first batch of genomics and clinical data. We were hoping to have that up yesterday on the actual day of our anniversary, but we'll be --within hours of that --that data will contain information from 14 pat --no, sorry, 12 patients, 14 samples, and we're already performing sequencing for the next data release which will be in six months. In the interim, we're going ahead, and processing data from the patient reported, information that we received, so that we can share insights that we received just from patients filling our those surveys which is incredible important and also from loved ones, people who have lost someone to this disease, the information that they can provide by also signing up is absolutely critical to our understanding of how angiosarcoma arises and spreads. 

Joel: Is the data the --the aggregated data that was not specific data that you're about to release --is that in the form that you could just give us an inkling, a share of what it looks like so people have an understanding of what this project can actually bring forward?

Dr. Painter: By the time the podcast comes out, people will be able to just click on our website and take a look at all the data for themselves. So, we'll have a data page, it will --if you go to ASCProject.org, there will be a tab called Data Release, and if you click on it, you can read about the generation of the data and there will be a link there that takes you to see Bio Portal which is the portal that is housing the data through Memorial Sloan Kettering Cancer Center, if you click on that, you'll see a time graphs pop up, you'll see graphs that represent all the patient reported data, graphs that represent the pathology that pathologists have used to talk about the angiosarcoma, you'll see genomics information and everything is linked. For example, angiosarcoma can arise in any part of your body, and so there --are there differences, for example, between angiosarcoma that arise in the scalp versus the breast. Well maybe we can sort that out by looking at the genomics of the two different cohorts, so you can select only patients that have scalp angiosarcoma and look at their associated genomic alterations and then you can compare it to the cohort of patients that have been sequenced that have breast angiosarcoma and start to piece out whether they're similar, whether they're different, what their differences are, what that might mean, should there be different ways of addressing angiosarcoma that arises in different locations, and so even in these very very early days when we have just a tiny bit of data, we can already start to --to have hypothesis that are generated as we add more people, and we add more data, we can start to validate those hypothesis and --and reach out into the community to see if there are scientists and doctors that would be interested in helping and validate those hypotheses, either through clinical trials or through downstream research. 

Joel: If a scientist would be interested in this data, how would they go about obtaining it?

Dr. Painter: Right now, they could just go for free on the C Bio Portal, again they can follow the link from our website, and they can download the data for free. So, its just part of the point, I guess I -- I neglected to mention this but it's part of the point of all of these projects angiosarcoma project included is to enable the entire research community to accelerate the process of discovery and we wanna do that by generating large amounts of data and making it freely available to the biomedical community. We wanna put the barriers to obtaining this data as low as possible. So, were housing it in places that have free public access so that people can immediately access it while at the same time getting all the raw data up into the genomic data comments and dbGaP which is where raw data traditionally lives, it takes a little while to get the data physically housed there. These are not from our end but just inherently takes a little while for it to get up there but the data that is just already gonna be available is the process data that we have on say Bio Portal.

Joel: Basically, this project is very responsive to what Vice President Biden had talked about removing the silos of information which is one of the things that really slows down progress in cancer research. So, this project and the other project really is creating data for not only patients and their physicians, but also as --who are working for researchers be able to take the next step.

Dr. Painter: That's exactly right, we're very lucky to be in a position where we're funded through private fully interbid to the Broad whereas most research scientists have to rely on grants. In order to get a grant, you have to publish and in order to publish, you have to get the best story possible and oftentimes, the best story is not necessarily the one that is gonna lead to change and somebody's clinical care. And so, we're in a position where our incentives are de-coupled from the traditional incentives of biomedical scientists. It allows us to focus on generation tools and generating data sets that can then be sent to the research community that desperately needs that in order to justify their research and in that way everybody wins. These scientists don't have to ask for money to go and do sequencing and/ or clinical data abstraction which is top to rate for because it --there's no singular hypothesis that is really fundable through traditional methods but if they can groom through the data that we can generate for them and then get a real nice hypothesis together, they can then get grants, they can open up entire doors of research cause we'll have these hypotheses that may not have been opened before and that's our great hope that we can just help all of the research science community by generation this data in order to help accelerate their own processes. 

Joel: That's amazing  and --and quite laudable, and we need projects like this with these goals. I think the private philantrophers and the researchers at the Broad actually wanna just step back a -- a second. We talked a little bit about angiosarcoma, what it is, you get a gave a great description but from somebody who has concerns --I mean, can you give any ideas to what symptoms may be like and if someone feels that there's concern or they have a concern, what would their next step be?

Dr. Painter: Sure. To start off by saying it's so exceedingly rare, your chances of being hit by lightning are a thousand times greater there's only 300 people a year actually has --I just made that statistic up, I don't know for sure exactly how many people are hit by lightning but it's --it's so exceedingly rare. Three hundred people a year in the U.S. are diagnosed with angiosarcoma, so it's a tiny sliver of people. Angiosarcoma can arise anywhere in your body, and so the symptoms are gonna vary greatly. For example, my symptom was a lump in my breast. Whereas somebody else may have a bruise, and somebody else may have what they think is a pimple on their face or somebody else may have fatigue if it starts in their liver. Somebody else may have a cough if it starts in their lungs. So there is no one symptom that would lead anybody to suspect that they have angiosarcoma with the exception of one demographic which is women who have had previous breast cancer and had that breast cancer treated by radiation therapy and such a small amount of those women but even if it was one woman that significant symptom to look out for is a bruise that arises in the radiation field, anywhere 20 years out, there can be a bruise that arises in the radiation field. If gone unchecked, it is angiosarcoma, it can become a very difficult to manage and to treat, but if found early, oftentimes, it can be dealt with to include chemotherapy, additional radiation in some cases, and in some cases, not sure if I said chemo and ther --and surgery. So, if it's caught easily, then it can be handled, if it's not, then oftentimes these women will have metastatic cancer and succumb to the disease. 

Joel: Yeah and just to make sure I understand it --you're not saying that only people who had had radiation for breast cancer are susceptible, it's just that one possibility, is that correct?

Dr. Painter: Yeah, I'm saying in terms of trying to understand what symptoms may be of concern, it's very challenging to say that any one symptom or --or set of symptoms is a reason to be concerned that you have angiosarcoma. It's an insidious disease, meaning that it --it often goes without symptoms until you're in the very late stages of the disease except for the only demographic person I know that does have symptoms that can be kind of an indicator that they should be concerned about angiosarcoma is people that have had breast cancer conservation therapy was radiation, and that symptom is a bruising area in the irradiated breast tissue or chest wall where they had that conservation therapy before. 

Joel: I understand. I know you're not a clinician and so you may not be able to answer this, in normal courses hence how is this differential diagnosis made even what you've just described must be awfully difficult.

Dr. Painter: The diagnosis is made by a pathologist, they will also look for a couple of different things. They'll look for the appearance of blood vessels or sheets of endothelial cells and also what are called blood lakes where there's just kind of free blood with necrotic tissue around it, they will look for specific endothelial cell markers like CD31 and urn and other particular stains to make that differential diagnosis and it's often difficult to make that diagnosis. I was diagnosed with two other things then angiosarcoma before my final diagnosis came through and I was diagnosed by one of the preeminent experts in the field who was absolutely brilliant, and it's not anybody, again it's not anybody's fault, it's just so rare and there are so many benign mimics of this disease that it's a very challenging diagnosis.

Joel: It sound of, so having experienced a very rare cancer, if somebody also --is diagnosed with any type of rare cancer, how do you suggest they go about dealing --you talked a bit about your personal experience is there anything you would add to that?

Dr. Painter: I think there are two bits of advice that I give and this is it my patient to had on, but the first one is get second opinion from large volume cancer centers that has seen your particular type of rare cancer before. There is almost no substitute for a doctor who has ex -- with it --expertise with your particular rare cancer and even no matter how rare it is, there's oftentimes a clinical champion who may have seen many cases of it before to find out who that person is, I would look online or on Facebook or on social media for patient groups that are coalesced around your particular rare cancer and ask them who's the person who has treated the most cases of my rare cancer before is oftentimes they'll know.

Joel: You did talk a little bit about your feeling when you were diagnosed, I listen to you now -- I --I do know you and you're not a person who is depressed by any stretch of the imagination and you're a person who's gone off and --and continue to be very accomplished. Is there any methods or things that you did that you found helpful in order to get from that initial feeling when you were diagnosed to where you are today?

Dr. Painter: It has not been an easy road. I won't lie. It has been extraordinarily challenging both emotionally and physically. I think the thing that has gotten me through is keeping myself busy with every waking moment and focusing on other people rather than myself. Focusing on my children and my husband and my family rather than thinking about my own impending mortality. So far, so good. I certainly didn't think that I would live this long. I just wanted to get as much infrastructure put in place as possible so that somebody else could carry the torch after I've leave this world. It was the greatest surprise of my life to wake up every single morning. Every morning I wake up I'm --I'm so surprised and so grateful for the opportunity to continue this work for angiosarcoma, but it is gone so far beyond that. I wanna do this for every cancer patient that has cancer right now, or that is destined to have it. I want this to be something that goes from a death sentence to a chronic disease to a cure, and I want that to happen as fast as possible. I think for me that has been the way I've made it through, just focusing on that. What is the next step, what is it that I do tonight, what do I do after the kids go to sleep, what do I do in the morning, how do I arrange my days that I can get the most out of it --that's been my method.

Joel: You are an inspirational person, I don't know what else to say. I really appreciate what you do and how you've done it. We are very lucky to have you. To actually wrap up now, I just wanna review if anybody is interested in learning more about the project, the Angiosarcoma Project, where to signing up and that's what we need --we need more people who've been diagnosed to join us, to join the Broad, to join Dr. Painter and begin the process of conquering this cancer. If you are interested as Dr. Painter has said, you should go to www. ASCProject, that's the angiosarcoma project, but the three letters ASCProject.org and that would be the place to start. If you have any questions or problems in finding out how to do that, you can reach to CancerABCs, that's Cancer C-A-N-C-E-R-A-B-C-s at gmail.com, and we'll make sure you get pointed in the right direction. I really wanna thank you so much Dr. Painter for all that you've done as a researcher to better the lives of so many people with cancer and particularly, I wanna thank you for what you've done for our fellow cancer survivors, CancerABCs is mainly oriented to taking people not letting them be just a survivor but be a thriver. I have to say that you are the paramount of a thriver. You are our model for, so I really appreciate that. Okay, anyway, thank you again.

Dr. Painter: Thank you so much for having me. It's been a real pleasure to talk with you and to help spread the word about the work that we're all doing together. 

Joel: Oh, thank you. This has been Joel Nowak from Cancer ABCs along with Dr. Corey Painter from the Broad Institute who is the most significant cancer thriver I know. If you've been touched by cancer, your goal should be not to just survive but it should be to thrive, and you too can become a cancer thriver. Don't forget to check out the many resources available at CancerABCs. org and, of course, for those people with angiosarcoma, the project is available at ASCProject.org, and if you have metastatic breast cancer or metastatic prostate cancer, there are similar projects, I don't, unfortunately, have the e-mail, the addresses, or the web addresses in front of me but if you do have metastatic prostate or breast cancer, again, contact us at CancerABCs.org and we will connect you up with them. Thank you so much for listening and remember, don't just survive, thrive. 

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