There are promising new breakthroughs giving patients and their families a reason to hope. In 2015, president jimmy carter suffered from late stage melanoma, a cancer once thought to be a death sentence. But after undergoing a new treatment, his tumors disappeared. And today, he is cancer free. How close are we really to finding a cure for cancer . To help answer that question, we are joined tonight i dr. Bill nelson. He is the director of the conference of Cancer Center at johns hopkins. Dr. Louise perkins is chief science officer at. The Melanoma Research alliance. The. Neil segal is political director of the director. Is an oncology Drug Discovery scientist and patient advocate who was diagnosed with cancer at the age of 40 cancer at the age of 40. You are an oncology researcher working on lung cancer primarily. In 2012, you had the highest of highs and the lowest of lows. Tell us what happened. Wanted to goays into oncology Drug Discovery since high school. I had a lot of cancer in my family. I plan on that for many years. I started on industrial focus in 2003. I was passionate about it because i was an indicator light caregiver for my mother and sister. I took it very personally and seriously, Drug Discovery for oncology. There is a lot of hard work and also luck in Drug Discovery. I was part of a Discovery Team for lung cancer about 10 years ago now. I was coinventor of a drug that was approved. It is a dream country for an oncology scientist to have anything approved. There is a conference each year. It was presented by our Clinical Trial, researchers at the Clinical Trial sites. It has shown an amazing response rate. I was walking on air. I felt i was helping my mom, so many patients. It was really kind of my one shot i thought at having success. By chance on the same day, i had a colonoscopy scheduled for about new. I went for the colonoscopy. They asked me on a scale of one to 10 about the anesthesia. I said 11. I had the spinal cap. I started waking up. I could hear the gastroenterologist who did the colonoscopy tell my wife your husband has colon cancer, we need to schedule emergency surgery. In six hours, i went from the highest of lies to the lowest of lows. Earlier in the day, i was crying with my wife and said there are few things that scare me in life but cancer is one of them. It was june 4, 2012. I will never forget that date for the rest of my life. That is true of most cancer patients. They never forget the day they were diagnosed. I had about a 30 cure rate, which is not great. But it is a lot better than zero. Katie i thought stage three had a higher than 30 cure rate. 3c. T was stage i had lymph nodes and invasion in minor logical system neurological system. I was a worstcase stage three patient. As a scientist, i look could look at the statistics myself. Katie they say you should not google anything when you are diagnosed. I didnt immediately. I did it immediately. Obviously, i was very upset and scared. Really clinging to the 30 hope. It is not great but that is real hope. I went through chemotherapy for six months. I had a clean c. T. Scan, did chemotherapy. My life turned around. I reprioritized my life in a lot of ways. I felt like i had dodged able it a bullet. I was always relatively active. I became a longdistance runner. Eight months later, i had my next c. T. Scan and there were enlarged lymph nodes. They were not sure it was cancer. Lymph nodes can be large for various reasons. I was in this weird purgatory where i did not know whether i had stage four or stage three. My cancer was very slow growing. We watched it on the c. T. Scan for almost one year. The lymph nodes would get a little bigger, a little smaller. It was a yoyo effect. Katie during that time, you were getting no chemotherapy . Nokia chemotherapy, just monitoring. We did not know if i had cancer. Psychologically, it was a challenging time. It was almost like purgatory. I did not know which direction to go. I knew if i had stage four, i would do everything i could to combat it. If i was cured, i wanted to move on with my life. I was kind of stuck in the middle. Weer a year of monitoring, had a couple of scans in a row that showed enlargement in the lymph nodes and a couple of spots in my lungs. I was at stage four. Katie you went back on chemotherapy . Four, itou are stage depends a lot on the patient and the doctor. There is a lot of leeway. I use the phrase currently incurable because i look at it like melanoma where people were considered incurable 10 years ago and now are doing fantastically. I was currently incurable at that point. Since i had such a low growing disease, i was having a good life. Why dont i put off chemotherapy for a while and keep monitoring it . My doctor is a fantastic oncologist and greets the plan. I went for a year without chemotherapy and monitoring. I went back on chemotherapy where we made a judgment call and had to weigh the quality of life with treatment. I went back on chemotherapy. Katie you have been an ordinary inspiration to so many people, tom. I know you have been writing a blog called adventures in living terminally optimistic. You have helped many patients navigate the Clinical Trial system which can be quite confusing. Why have you done all of that . What has that given you . For two different reasons. I started with the blog. I started because when i was first diagnosed, the first thing i did was go to google and find a blog. It gave me a lot of comfort. To, i loved it because it was realistic. It talked about cancer and harsh, realistic terms. But it always had hoped involved in it. It brought me so much comfort. I really started the blog because i wanted to keep my family updated. I did not want to bombard people. I wanted to do something where they could look at a blog. Originally, it was going to be a private blog. At the last second, i decided to make it public. I imagined a new patient being diagnosed going to google and needing comfort. I wanted to pay it forward. I wanted to pay it forward to the next person. They became public. I wrote my first blog piece. All of a sudden, what had been planned to be an update to my family turned into so much more. I quickly realized within the first post that i had a very unique viewpoint. I was a scientist so i knew uptodate information on science approaching Clinical Trials. I knew a lot about Clinical Trial data coming out. Katie you could basically translate it because when you are thrust into this world of cancer, unless you are trained like the three of you and you, tom, it is like suddenly learning a foreign language. Exactly. I knew this information. I wanted to help other patients. I decided i can write about this in layperson terms. It then became a real mixture of a blog where i alternate. Journey inown cancer harshly realistic terms. I talk about chemotherapy and vomiting, all of the emotional things, family, young kids. But i alternate with posts that are scientific in layperson terms. It was meant to share with my fellow Patient Population the things that i knew. Why would it be fair for me to know these things and not share it with my good friends . The two things played off of each other nicely. It was somewhat by design, but it took more than expected to cost more than expected. There are other places to get scientific information in layperson terms. When a fellow patient reads about it from someone who knows what they are going through who has skin in the game, it makes it so much more powerful. My little blog started taking off. I now have tens of thousands of hits per post. I am in 140 countries, six language. My biggest readership is in china, in chinese. Everything is translated by a group of scientists where i work who are chinese immigrants. I get so many messages from people. It has been so rewarding. That was the start. I realized there were limits to what a personal blog could do and i started working with a couple of organizations. I became their inhouse scientist and i write for them and work with them educating patients in layperson terms through their network basically which is much more than a personal blog can do. We may want to talk about it later. Then i started working with the clinic which is basically a private community where we talk about Colorectal Cancer trials 365 days a year in a conversational tone. Scientists fellow who have a personal connection to Colorectal Cancer. We give them information on trials opening up because it is hard to find the information normally. The real purpose is to explain the trials in layperson terms. We have more than one professor of immunology to talk about immunotherapies in this private setting that is facebookbased. It is a private conversation. Patients can go to their medical oncologist with trials that they have been made aware of, which is hard to find without help. They have a basic understanding in layperson terms. For thesupply pdfs ecologist to read. It has been amazing. Katie well, you are amazing for doing all of this and helping so many people while you are going through your own cancer ordeal. I want to talk about a couple of the things you raised with the folks the symbol here. One is you were four years old when you were diagnosed with cancer. Reec colon there was a study out recently led by the American Cancer Society scientists that showed for colon and rectal cancer is going up for people under the age of 50. Of course, 50 is the recommended age for screening unless you are symptomatic as you were. Tell us more about the study and what your reaction was to it. This is a report from the people who keep score of who gets cancer in the country, where they live, differences between men and women, differences and ethnic groups. There was a lot of good news in the study. We are finding Colorectal Cancer mortality broadly has been declining, particularly in folks above the age of 50 who get screened. The people who get colonoscopy and whatnot. There is clearly a benefit. Overall, it is getting better. Screening rates are going up. Survival rates are improving. The worrisome thing, in the same report card, is there is an increase in Colorectal Cancer from cancerd death in this younger age group. They are not the people typically getting screened because they are younger than 50. I dont think anyone knows for sure the reason, but some of the things we know contribute to Colorectal Cancer. Obesity, dietary habits, and the like. Maybe this millennial generation has more of those risk factors for cancer so they are getting it at a slightly younger age. That is worrisome. We need to figure out a way to help. Inie compared to those born 1950, those born in 1990 have doubled the risk of colon cancer and four times the risk of rectal cancer. The press release with the study said our finding of Colorectal Cancer risk for millennials has escalated back to the level of those born in the late 1800s. It is very sobering. Educational campaigns are needed to alert clinicians and the general public to help reduce delays in diagnosis which are so prevalent in no people, but also to encourage healthier eating and more active lifestyle to try to reverse this trend. One of the things that came out of this study was a discussion about the screening recommendations. Right now, the American Cancer Society and other organizations recommend screening start at age 50. Some organizations, 45 for African Americans who have a slightly higher risk. Do you think the screening age needs to come downsome organizar african for colon cancer and rectal cancer . I think studies like this are exceptionally important to focus our attention on the increasing incidence in various age groups. This is the type of data the folks that guide the recommendations for the age of screening will use to make recommendations. Studies like this will start the conversation. They will take it one step further and decide on what the screening age should be. That is the one we will follow. There are certain populations with higher risk features that should have screening at lower ages, particularly Family History for example. Symptoms, as mentioned earlier. Those are specific indications. Katie what do you think is behind this increase among younger people . That is a very good question. I dont think we know just yet. The article made the point of Healthy Lifestyle is important, diet may be important. Exercise may be important. There are potentially other factors changing the incidence of colon cancer and rectal cancer in a younger age group. Knowing this is becoming a problem will prompt discovery into the cause. We are just at the beginning of answering that question. Not to be too graphic, but one of the things i have discussed with doctors about the study is the importance of digital rectal exams. And that many doctors and patients do not want to get those done because they are uncomfortable or whatever. But that is critically important when it comes to diagnosing rectal cancer in particular. Youre talkingr, to somebody who was a Prostate Cancer for a long time so digital examinations are something we use frequently to look at that space. The key is going to be if there is going to be more cancer in this generation heralded by more cancer at a younger age, we need to get on top of this. We need to figure out the risk factors. Can we deploy Public Health maneuvers to make them better . And then i think we will develop new screening tools. If we can find d. N. A. On a hair follicle at a crime scene, can we find cancer d. N. A. In the circulation or stool or Something Like that . Katie not nearly as invasive as colonoscopy. I think those things are on the horizon. I think they are coming. Katie i am always worried to talk about that because i am afraid that will discourage people from getting screened with the tools available today because they are waiting for something on the horizon. I think the topic of Screening Test is a very emotionally charged topic. There are a lot of invocations of the right age to be screened. Nobody wants to be screened at the age they should be. Theave to recognize downsides of screening in the lower risk population. What could the positive false positive rates be and the additional cost of testing be . Katie lets talk about younger patients and melanoma as well because it is really increasing among younger women in particular. What can you tell us about that . Most cancers,ike is a cancer of aging. It tends to happen to people in her 50s and 60s and so on. Melanoma is unique in that it is the most common cancer among young women ages 25 to 29. Why is that the case . Perhaps it is excessive exposure to ultraviolet light. We know if you look at the d. N. A. Sequence of melanoma that from sun exposed sites, ultraviolet light exposed sites, you can see the footprints of d. N. A. Damage in those melanoma cells. It stands to reason ultraviolet light played a role in causing those melanomas. So why, if you are a young woman, would you jump into a tanning bed where they will bombard you with ultraviolet light . It may well be, although i do not think there is data to support it, that high exposure to u. V. Light is playing a role in this high prevalence in the summer women of melanomas. That said, i think another factor that could potentially play and is that nobody expects somebody in that age group to have a melanoma. I suspect some of these folks are underdiagnosed before it becomes a terribly aggressive situation. That is true in Colorectal Cancer as well. We talked about screening already. Another thing from the study is i was lucky. I had symptoms. Education that it is possible. You have hearde stories of people who had blood in their stools who were basically told they had hemorrhoids. Exactly. I hear those stories every day. I think the worst aspect of it arehat younger people diagnosed with cancer but they tend to be diagnosed at later they are note taken as seriously with the symptoms. For younger Colorectal Cancer patients, they are often diagnosed at stage three or four. Katie in my husbands case, it was stage four. It was all over his liver by the time he was diagnosed. Is linked to survivability rates. Those statistics are feeding into that study. Katie what can we tell people watching at home who may have cancer or have a lacuna cancer and they are desperate for information about Clinical Trials and just cannot find them . They do not understand when they are eligible. The key to understanding Clinical Trials is communication. That communication should be had between patients and their physicians on an ongoing basis. The question could be as simple as, what Clinical Trials are open . What could be happening . Which one should i be following . There are phase 1, 2, and three. Phase one is early trials where we are trying to determine the dose of the drug and the side effects of the drug. A phase two Clinical Trial is to know the dose and how well the drug works. That could be part of phase one. A phase three Clinical Trial is comparing a potential new therapy against a standard of care. Lets talk about phase one Clinical Trials and phase two Clinical Trials. These are usually small Clinical Trials. There may be 20 to 40, that is the general seismic Clinical Trial. They may be open for a few months. They may open at certain times. Three patients may be enrolled and then there will be a time when the trial is not enrolling. It is a cumbersome process trying to stay on top of what trials are available. At memorial, the ability to put patients onto Clinical Trials is of paramount importance to us. It is very important to