(serene music) - [Narrator] PBS Utah Town Hall, Colorectal Cancer in the Black Community, is funded by Associates in Colon and Rectal Surgery, Utah Cancer Specialists and Huntsman Cancer Institute.

(upbeat music) - Good evening and thank you for joining us for this PBS Utah Live Town Hall focusing on colorectal cancer in the Black community.

I'm your host, Liz Adeola.

March is Colorectal Cancer Awareness Month and tonight is all about separating facts from fear.

The goal is to help you and your family maintain the best physical and mental health.

PBS Utah has teamed up with the Martin Luther King, Jr. Human Rights Commission, Rogers Solutions Group and the University of Utah School of Medicine to share the latest science and information about colorectal cancer, also called CRC.

To discuss CRC and the health disparities faced by medically underserved communities, we have Dr. Charles Rogers, Assistant Professor of Public Health and one of the nation's leading authorities on CRC disparities among Black men, here in the studio with us.

We also have a panel of experts from across the nation weighing in via Skype.

We have Dr. Dana Hayden, who is the Chief of the Division of Colon and Rectal Surgery at Rush University Medical Center in Chicago.

Agnes Lomu-Penitani is a CRC survivor and she's from right here in Utah.

Candace Henley is the Chief Surviving Officer at The Blue Hat Foundation in Chicago.

And Shannon Lee-Sin is a CRC survivor and an activist from Miami, Florida.

Thank you so much for joining us tonight.

We are so happy that you all could be here for this very special presentation.

Well over the past three years, we've seen more young adults die from colorectal cancer.

CRC is no longer reserved for those ages 50 and up.

A growing number of Americans, especially African-Americans, are diagnosed at younger ages and at more advanced stages than White Americans.

Take a look at your screen, just three months ago in December, B.A.P.S.

actress, Natalie Desselle-Reid died at the age of 53 from CRC and she was diagnosed the same year she died.

Another tragedy last August, Black Panther star Chadwick Boseman died even younger.

He was only 43 years old and was diagnosed in 2016 with Stage III CRC.

Dr. Rogers, it was such a shock to so many people, and such a huge loss, to hear about Chadwick Boseman's death.

Can you tell us why this disease is affecting so many people at younger ages?

- Great question, Liz.

So unfortunately, many experts, me included, are not sure what's causing this rise in colorectal cancer among individuals younger than age 50.

But we do, potentially, know some things that may be contributing, those being obesity, smoking, lack of physical activity, bacteria in the gut and as well as gut inflammation, more sitting time watching TV.

We notice sitting is somewhat called now the new smoking.

But regardless of all these potential risk factors, there are people that are getting CRC at a younger age who don't have any of these risk factors.

- Wow, and it's tragic, it's heartbreaking and according to the American Cancer Society, Black and indigenous people have the highest rate of late-stage diagnosis and death from CRC.

Yet, it's a disease that is up to 90% preventable and treatable with early detection.

It's estimated that in 2021, 12,750 Utahns will be diagnosed with cancer.

900 of those diagnoses will be colon and rectal cancers.

Dr. Hayden, can you talk about the stages of CRC and the importance of early detection?

- Sure, so the stages include anywhere from I to IV but what's not great but what's fortunate about colon and rectal cancer is that regardless of the stage, even if you're diagnosed at Stage IV, we still are very aggressive about going for cure.

So regardless of the stage, we can still really come together with the treatment options that can focus on cure instead of just palliative intent.

So the importance of screening, regardless of the method of screening, is identifying cancers as early as possible.

Some cancers can be identified as early as Stage I when they're in this polyp.

That polyp can be removed during a colonoscopy and that can cure the cancer and be all that's required.

But again, identifying these cancers early is the most important thing so that can lead to curative surgery and or other treatments.

- It sounds like it's critical.

How often is misdiagnosis?

- Well, it's interesting.

So, the symptoms that are associated with colon and rectal cancer are actually gonna be very common and associated mostly with benign which are the ones that aren't associated with cancer at all.

So misdiagnosis can happen, it's very rare when it comes to a colonoscopy, when we're taking a look directly at the lining of the colon where a misdiagnosis can happen.

So once we're looking, the chance of missing something is pretty small.

- Wow, well, let's bring in our panel of cancer survivors, Agnes, Shannon and Candace.

Shannon, I hear that you had to guide your way through a misdiagnosis.

What happened there?

- Misdiagnosis is a great understatement.

I started having symptoms when I was 17, 18, in high school, 11th grade, 12th grade.

I told my pediatrician that I was having chronic stomach pain and I had some bleeding in my stool and he diagnosed me with a stomach ulcer and never did an endoscopy.

So, fast forward about seven years, and the symptoms came back with a vengeance.

And I had nausea, vomiting, constipation, diarrhea.

I was anemic at one point, they wanted to give me a blood transfusion.

And when I asked why they wanted to give me a blood transfusion, what was wrong with me?

They said it was my heavy menstrual cycle.

And I had a fever of 103 and I knew something was wrong more than what they were saying.

So, I denied the blood transfusion.

In all, I saw 20-plus doctors, I was in Jamaica finishing my bachelor's degree.

I flew back to Miami where I grew up and ended up in Emergency Room within one week.

I was misdiagnosed again with cysts and endometriosis and polycystic ovarian syndrome.

Two days later, we returned to the Emergency Room, the same Emergency Room.

They did another ultrasound, they saw nothing.

And so they did a CT scan and it was in that CT scan that they realized I had an abscess and my blood tests said that I was going into sepsis.

So, I ended up getting a blood transfusion.

I ended up in ICU and at that point, they still didn't know what was wrong with me.

- Wow, so it sounds like you really had to fight for your health and to continue advocating for yourself throughout that entire situation.

Agnes, did you have a similar journey as well?

- Correct, yes my early 20s, I've been having stomach pain and I was told that I have a hernia.

So I got that taken care of.

And then a few years later, I still had really terrible stomach pain to the point where I couldn't even move for three hours.

And I went back to the doctor and he did a endoscopy of my stomach, couldn't find anything.

And then I was told to just take medication.

I did that and I still had pain.

Went back, they did another endoscopy of my stomach and still the same thing, they couldn't find anything.

And so it wasn't until, and during that time, I did ask if I can have a colonoscopy.

And they said, I was only 40 years old, so I do not need a colonoscopy until I'm 50 years old.

- [Liz] Oh, my.

- And so 18 months later, I was then diagnosed with colon cancer.

- A long journey, indeed.

And Candace, I also heard that you had to struggle with misdiagnosis as well.

- Yes.

My journey took six months to be diagnosed with colorectal cancer.

I first presented with symptoms in December of 2002 and it was after I not had a bowel movement in two weeks.

And I had tried everything on the market to help me go to the bathroom and none of it worked.

And I wind up having to be taken to the Emergency Room 'cause I couldn't stand up straight.

And when I went to the Emergency Room, they gave me a small cup of GoLYTELY or just something to help you go.

In a couple of hours I went and I was released from the hospital, no questions, no nothing.

And so, I didn't think to ask anything.

I just figured, okay, well, it was just on of those things.

I went to work a couple of weeks after that and I passed out, I was a bus driver at the time, I was boarding the steps of my bus and passed out on the steps.

And they took me again and another Emergency Room trip.

And at this point, they thought I was having a heart attack because I was having heart palpitations.

And then they did a blood draw, my blood count was 6.4.

And because I had a history of endometriosis and fibroid tumors, they referred me back to my gynecologist because that was what they determined was the issue for the blood loss.

So, I did wind up having my ovaries removed and then called back in, maybe a month later, to have my uterus removed and a blood transfusion.

And that was to be the fixation of everything that was my problem.

Well, two months later after that, two weeks after my 35th birthday, I wound up back into the Emergency Room because I was drinking a cup of water and I just started vomiting uncontrollably.

I called my primary care physician, he sent me to the Emergency Room and told me to have them call him.

So, I did and when they drew my blood, my blood count at that point was 5.2.

And normal blood count is between 12 and 14.

Well, I didn't understand that language at the time.

And so, they told me then that there was something going on that I was bleeding from somewhere.

And so, they did a fecal occult blood test and they found blood in my stool.

I wind up having an emergency colonoscopy and that's where they found a grapefruit-sized tumor on the right side of colon.

- [Liz] Wow.

- And that was six months.

- I am so glad that you guys continue to advocate and fight for yourselves and that you're willing to speak up tonight about this important topic to help others do the same, who may be turned away or have a misdiagnosis to not give up and to keep fighting for those answers and advocating for their health.

Well, we also want to spend some time this hour answering questions from the community.

The first one, I'll direct towards you, Dr. Hayden.

This one is from John in Draper, Utah, who wants to know, "Are there new advances for screening and testing of CRC?"

Dr. Hayden?

- Sure, so, there are actually multiple methods for screening and that includes colonoscopy, which is actually the gold standard.

However, there are new tests that test DNA in your stool, so you can send a stool sample in, and that will test for shedding of tumor cells.

And that's actually very sensitive.

There's other tests that are performed via the blood.

That's a newer test that shows really good sensitivity, as well, and that can help identify colon cancer at an early stage.

And then there's other tests that include certain types of x-rays.

One's called a virtual colonoscopy, which is actually a CT scan that can show the outline of your colon very well and identify polyps as small as one centimeter and clearly larger tumors.

So, there's lots of different options.

And what I always say to my patients, "The only option is not getting screened."

- Thank you so much for that.

We've learned that COVID-19 infects Black Americans at a rate nearly three times higher than the rate of White Americans.

And Black people are twice as likely to die from COVID-19.

Colon cancer rates in the Black community are also alarming.

Black men have a 47% higher chance of dying from CRC than White men.

And Black women have a 34% percent higher chance of dying from CRC than White women.

According to the American Cancer Society, and the National Institutes of Health, African-Americans have a disproportionate share of cancer for CRC alone.

Black people have the highest death rate and the shortest survival of any racial or ethnic group in the United States.

For most cancers, Pacific Islanders and American Indians are not too far behind.

Agnes, can you open up about your journey to learn more about CRC and why, at the time, it was something that was new to you?

- Yes, so, it's in our culture, we don't talk about cancer.

We just say the word cancer but usually we don't share what type of cancer.

So when I got diagnosed, I made sure to call all my family all over in Australia, New Zealand, and let them know that they need to get tested.

And it was also interesting how the education piece that's missing that I wish that I knew about it, I did not know anything about colon cancer.

But having gone through it, and going through it, educating my family and friends, that is something that I am very interested in doing.

And so, all my family in Australia and New Zealand got tested.

And having to even explain what colon cancer to my 98-year old grandmother was also interesting because she didn't know anything about colon cancer.

So, that really, having colon cancer actually, helped me to share that information to my family and make sure that they get tested as well and also to my friends.

So, that's very critical and important to me.

- Right and that community that you mentioned is the Pacific Islander community, right?

- Yes.

- Yes, Dr. Rogers, can you expand a little bit about what she's talking about and why this an issue?

- Yeah, so, there's two things that come to mind, and I'll coin the words often provided by my friend, Candace, who is with us today is that in the Black community specifically, we have to realize that family secrets kill generations.

So it's very important that, like Agnes here, she took the initiative to, she knew something was wrong and she shared it literally across the world.

And so if each of us can have that mindset going forward, we really can save lives for generations to come.

And then the second thing that I would add here is, and we're seeing a theme here in terms of being our biggest advocates.

That is very, very key going forward for each of us 'cause all of us know our bodies better than other people may know them.

- Absolutely and speaking of which, have you or a loved one ever felt pain or notice that something just wasn't quite right, but you took a wait-and-see approach instead of seeking medical attention?

I know I've done it before.

This is especially common in marginalized and medically underserved communities and for people without health insurance, but this approach could prove deadly.

So it's important to know the warning signs that you should be on the lookout for.

Take a look at your screen right now.

And if you have a pen or pencil or a piece of paper jot this information down.

Here are the warning signs to never ignore.

They include abdominal pain, change in size or shape of stool, blood in stool, constipation and diarrhea, nausea or vomiting, unexplained weight loss.

And Dr. Hayden, those are just a few, can you elaborate on these and any other warning signs that we should be on the lookout for?

- Sure, yeah and thank you for addressing this.

So, I just do wanna say something to my co-panelists on this.

I'm so sorry about that journey that you all had to endure.

I was as a fellow down at Cleveland clinic, Florida, we saw a lot of colorectal cancer in younger people.

And we did research to look at this.

And again, we don't know exactly why this is happening but I say to every one of my patients that age is no longer a risk factor for colon and rectal cancer.

The symptoms you really have to pay attention to no matter what age.

So I will scope anyone who comes in my office complaining of rectal bleeding, regardless of how young they are.

So I'm really sorry you all had to go through that.

For when it comes to those symptoms, you know, change in bowel habits, feeling short of breath or more fatigue, or being more tired than normal having blood in your stools.

All of those things are likely gonna be related to some sort of benign problem.

It's much more common to have symptomatic hemorrhoids causing rectal bleeding, than a cancer.

However, you have as your own advocate and the advocate for your family members, you have to be going to seek medical attention and asking those questions, if this is normal.

It is never normal to have these things and it's up to the physicians to then do our job to then rule out things that are, you know, potentially life-threatening like a cancer.

- Wow, thank you so much for that.

Now, turning to our survivors panel, Candace which of the warning signs did you experience?

I know you all shared your journey before but was there anything before you got to the hospital or the doctor's office that you found to be quite off that that was a warning sign for you?

- Well, I had constipation which was something that I didn't have issues with and I was preparing for my first bodybuilding contest.

And so, I only ate what they call consider now clean.

So I was only eating chicken, fish and Turkey.

So to be constipated was something that I never had before.

And then prior to I found myself being lightheaded and out of breath when I would exercise which was a warning sign that I didn't realize at the time.

So the main symptoms that I had was the constipation and not having a bowel movement in two weeks.

- And Agnes, what was it for you?

- For me, it was definitely constipation.

And just mainly this stomach pain to the point where I couldn't move for about three hours.

I even had to call 911 because I literally was in the store and I was in my vehicle and could not even get out of the vehicle.

And so they had to take me to the ER but that was probably the main reason, but, you know, going to the ER, they kept misdiagnosing.

But the biggest thing that made the change was a weight loss that I was losing weight for no reason.

I did go to my doctor and she basically said that I probably just need to lose some weight and then come back in three months.

But that they did find protein in my urine.

And she didn't think that was any problem but I decided to call my GI and that's when I finally got diagnosed.

So, even though that my primary doctor said not to worry about it, I called my GI because I knew my body and that there was something just wrong with it.

- And Shannon, what was the warning sign for you?

- For me the first symptom that I had was chronic abdominal pain pretty much every morning and almost every night when I was 17, 18 and in high school.

Then the stomach pain would be off and on for the next seven years or so.

And then in 2007, it got to the point where the pain was chronic again.

I had diarrhea for two weeks straight despite medication for gastroenteritis, it didn't stop.

And then finally it subsided and then I became constipated often on where I wouldn't go for a few days.

And when I would go, it would be really painful and there'd be a lot of pressure in my abdomen.

And then sometimes I would see blood in my stool once again, off and on.

And I was told I had hemorrhoids.

Eventually I ended up in the Emergency Room, as I said and admitted to the hospital.

And I had a fever and severe anemia.

And I was told that I had heavy periods, endometriosis polycystic ovarian syndrome, fast forward another year.

So this is now it's 10 years after the original onset of my symptom.

I ended up in Emergency Room again.

I had that infection.

I'm in sepsis.

I have an abscess in my abdomen.

So those are more symptoms that I had that infection.

They wanted to get the infection and inflammation down to be able to do a colonoscopy which was not invasive but that infection kept on returning.

So I ended up getting exploratory surgery and finally they were looking at my digestive system after 10 years of looking at my reproductive system.

And when he went in, he found out that I had stage IIIC colon cancer and I ended up with an estrogen.

So, I came out of surgery with the surprise of having cancer after suffering that many years with symptoms and knowing something was wrong.

- How do you not lose faith or trust in the system after having to go through such an ordeal just to get treatment?

Any of you can chime in.

- I'll chime in a little bit.

I had to learn that I could fire doctors.

I had to know that it was okay, but if I felt that a doctor was not trying to save my life and find out what is wrong with me and giving me an answer that made sense, I had the right to go and find another opinion.

I also learned that I had to learn as much as I could about my disease and that education and that information is what has kept me alive thus far because I'm able to speak to my doctors and know that it's okay to question them and make decisions in terms of my care.

So when I find a doctor that I trust and I feel that I can trust my life with him, which is hard to find, I stick with them.

And there are good doctors out there despite me meeting doctors like 20 plus doctors that weren't looking at the right place.

There are disasters out there and I do have a good team now.

- Wow, thank you so much for sharing that.

We're gonna get to another viewer question this time from Meligha who is in salt Lake City.

He submitted this on our website.

He wants to know, "If your grandfather and great-grandfather "Both died of colon cancer, should I get a screening?

"How do I go about getting a screening if I'm young "And don't meet the screening age?"

Dr. Rogers, can you fill that question from Meligha?

- Yes, in brief Meligha, the answer is absolutely yes.

So, you know, that's what we consider you have in a family history of CRC.

And so for individuals who have a family history of CRC, you're usually recommended to get screened at age 40 or 10 years from the diagnosis of your family member, whichever one comes first.

And in terms of you being concerned about screening being, for you at a younger age, I wouldn't be concerned because of that family history piece.

And so with that, most insurance companies cover 80 to 100% of early detection screening costs.

- Thank you, one of the big problems is a lack of information for underserved communities.

That's why some doctors are putting together public service announcements like this one.

- [Narrator] An important message from your gastroenterology across America.

- Colorectal cancer is the second most common cancer killer in America.

- The death of Chadwick Boseman at the age of 43 to colorectal cancer fills us all with so much sorrow.

- It reminds us that colorectal cancer happens in young people.

And that Black men and women have the highest rates of getting the disease and dying from it.

- But we can stop colorectal cancer in its tracks.

- The disease is preventable, treatable and beatable when you get screened at the right age.

- For most screening starts at age 50.

- But for high risk groups like Black men and women screening starts at age 45.

- If you have a family history of colorectal cancer or other medical risk factors for the disease screening should start at age 40 or earlier.

- Chadwick Boseman's untimely death is a wake up call for all of us.

- We as Black gastroenterologists and colorectal cancer warriors are fighting to make colorectal cancer screening and prevention a priority.

- When caught at an early stage the survival from colorectal cancer is 90% but when caught at late stage, the survival is only 11%.

- And this is why prevention and paying attention to any symptoms you may have is so important.

- [Doctors] Talk to your doctor today about colorectal cancer screening.

It can save your life.

- Yeah, let's talk about the importance of early screenings.

The best screening is the screening that you actually complete, but studies show that one in three people are not up to date with their CRC screenings.

There's a misconception that a colonoscopy is the only screening test but there are other options.

Dr. Hayden, can you share what those options are?

- Sure, one is called Cologuard is the trade name.

And that's a stool test that your primary care doctor can order for you.

You perform the test at home when you send in a stool sample and then within a few weeks, you get the call back.

If it's negative, then you should be good to not have to repeat that same screening for about three years.

If it is positive, then you do need to get a colonoscopy.

There's also blood tests to check blood in your stools and then also an actual blood test where you get a blood draw and that contests be very sensitive for detecting colorectal cancer in an early stage.

- All right, thank you.

Well, we received this question from our website from Rena in Milwaukee, Wisconsin.

She wants to know how reliable are the at-home tests for CRC?

Are there many home tests available and which one is the best?

Dr. Rogers, can you chime in for that one?

- Great question, so just as Dr. Hayden just mentioned, there's three major at home tests those being the fit, which you would do annually a gFBOT, which you also do annually as well as these DNA stool based screen exam like Cologuard, for instance, and with these in terms of their accuracy there, roughly, you know, 90 to 98%.

So just like the COVID vaccine the best one is the one you get done.

- Absolutely, and we wanna bring back our panel of survivors to see what you tell people about the screening test and what advice that you give to people who may be wary about getting tested for CRC.

Candace, it looked like you wanted to chime in.

- Yeah, sure, I am.

So people hear that prep.

I mean, if you've the disease, not the prep and you can have 15 minutes or 15 years.

15 minutes is about approximately the length of time that it takes to go through a colonoscopy.

And 15 years is about the time it takes to go through a cancer diagnosis from diagnosis to treatment, to even survivorship.

You're putting your life back on track.

And so when you think about that amount of time especially when I think about my story it has been well 18 years now but it took me 14 years to get my life back on track.

- Wow, Agnes, what do you tell people?

- I definitely encourage them to do screening as, especially if they have a family that's have been diagnosed with colorectal cancer to make sure that they do that.

And in spreading the word is just educating people to make sure that they do it.

- And Shannon, how do you broach the subject?

- Well, I am Jamaican and there is a huge stigma as well as there is in the community.

You know, African-American community here.

There's a huge stigma against getting a test especially among Black men.

I definitely say that it's better to get screened than to end up with cancer because this is actually something that can be prevented.

I also make it a point that people should know their family history.

And if they have a family history or they have symptoms I definitely try to push for colonoscopy because that is the best test because the doctor's seeing everything with his own eyes and doing an annual colonoscopy is what has saved my life.

And so I told them that if I'm 39 now as of last week, I've had 10 or 11, I'd lost count colonoscopies since I was 29.

And I would much rather have a colonoscopy every year than have cancer again.

And so I think anybody should get a screening rather than wait until it's too late, because sometimes you don't even have symptoms and you just never know.

So definitely know your family history, get screened younger if you have a family history of people who are diagnosed younger, and definitely although the prep can be hard there are better preps out there now and so don't be out of prep.

- Right, well in 2017, Reverend Raphael Warnock, now U.S Senator from Georgia stated racism is America's preexisting condition.

Scientific studies show that people who experience racism have higher rates of illnesses.

For some people there is deep distrust and fear surrounding the healthcare system.

History shows us why from medical experiments performed on enslaved Black people to the commercialization of cancer cells taken from Henrietta Lacks without her consent.

You can even point to the 40 year long, deadly and unethical syphilis experiments performed on Black men in Tuskegee, Alabama, again, without their consent.

Dr. Rogers your team has coined a phrase called the Tuskegee effect.

What exactly is that?

- Great question, Liz.

So in some of my previous work featured in the American journal of preventative medicine as well as NPR, we did some work looking at genetic and genomic testing views among American men and Minnesota, Alabama, and California.

And what we learned from these men is that as a result of Tuskegee, the medical mistrust was so deep that it not only discouraged him from participating in research and clinical trials but it also encouraged them to not trust, you know, the health care system as either as well as don't trust any genetic or genomic testing.

And so that's what we coined as Tuskegee fit.

- And what were some of the barriers to colon cancer screenings that you uncovered in your research?

- So for my own work, there's been a plethora of things ranging from lack of knowledge, to lack of social support, poor patient provider, communication, medical mistrust, fear, embarrassment, racism, not race and as well as many social determinants of health we may take for granted, such as on where you live if you have health insurance, et cetera.

- Wow, well, I want you to expand on this next topic that we have.

We received several questions from people on our website about this topic, many asking for tips on encouraging Black men to pay better attention to their health and others asking for resources to help find Black doctors especially here in Utah.

Do you have any additional advice?

- Yes, so some of the answers is in your comments, Blackdoctor.org.

It's an option as we've seen from the panelists I think is very key for individuals that take the time to try to find a provider that not only cares about you but also really cares for you.

And last but not least as we've seen from our panelist here, being your biggest advocate is key.

You know, we've seen from these stories that you may have to be consistent 20 times or you may have some people that are like Dr. Hayden dad, you come to them and they don't care what you say.

So regardless of the fight you have to, regardless of the fight you may have, you still need to push forward and do what's best for you and your health and your family.

- What would you say to those people who are afraid to go back 20 times out of fear of not being able to pay the bill for it?

- I would say that shouldn't be a barrier.

You know, there are numerous charity programs.

There's numerous organizations that exist, like fight CRC the Colorado Cancer Alliance that can connect you with resources that are specific to your state.

So, you know don't let that be a barrier to saving your life.

- And Candace, Agnes and Shannon.

Would you guys like to add anything on to that?

- I would like to add something.

Okay, you wanna go ahead?

- No, no go ahead.

- Okay, when I started having that pain and I was in Miami and I had come up here for a 20 something opinion, I didn't have insurance and I literally knew something was wrong and I thought I was dying.

And I told my mom, literally I quote, mom, I need to go to the Emergency Room because you will either be paying for a funeral or I will be alive and pay my medical bills.

There is no price to your life.

Your life is priceless.

It's worth fighting for, it's worth paying for.

There's no limit to how much you should be willing to pay or run up bills to save your life.

And my grandfather had cancer and he's in not wanting to do treatment because of what it would cost my family.

And I told him the same thing.

I said, we would pay millions of dollars to have one more hour with him.

If we had to, unfortunately, he didn't make it but that was the best advice I could give him.

And it allowed him to fight because he was putting a price on his life and he shouldn't have.

- Wow, thank you for sharing that.

Those are the powerful words for people to remember tonight.

Do not put a price on your life, Candace.

You also wanted to chime in as well.

- Yes, yes, so a lot of people don't know that hospitals now have what's called charity care.

And so that's an opportunity for patients to ask if there is any type of assistance available for, you know for the hospital bills and it's something that can be done through either the intake person, that person that takes your insurance or through social services.

So that's definitely something that I encourage everyone to ask a lot of times we don't ask questions because we fear the word no, but I think it's very important when it comes to your life.

You don't know if you don't ask.

So ask if there is anything in place that can assist you in paying for your medical bills, you know, your hospital visit.

You don't know if you don't ask.

- And Agnes, what would you like to add?

- Yes, I definitely agree with the importance of also asking about different resources in the community because there are different types, especially if you are a single mother with kids and having to go through with that there's different resources that also will help pay maybe for your utility bills.

So the patient advocate care in the hospital usually would have all of that information but I would also the advocate piece is probably the biggest piece.

I am my own advocate.

I have an oncologist that disagreed with me about having my liver dissected.

And for several months, I would ask him to please talk to the surgeon about revisiting because I did 40 treatments of chemo and the tumors have definitely they've been shrinking and he would not do that.

So I had to talk to the PA to get me the information.

And then I went and talked to the surgeon.

So you are your own advocate.

I'm my own advocate.

And if there's something that I disagree and it's just time to maybe look for a different oncologist.

So there are certain barriers and certain things that I feel like the doctor's not listening.

So I would cry or I would just keep asking but he won't do anything.

He says, I'm sorry, but statistically, this is what it is.

So I said, no, I'm gonna do this, I'm gonna be my own advocate.

And so that's what happened.

- Agnes, I wanna ask a followup to that because it has to be something to go through all of that get to the doctor and not feel heard when you're feeling your worst.

What kept you pushing and fighting to be heard and for your health?

- I have three little children, they are nine, 10 and 12 and I wanna see them grow up and graduate.

And so that just, and I wanna live.

So that was the one thing that I was pushing 'cause I wanted to spend time with my children.

And I said, there has to be more than this.

So he was just a barrier for me.

And so I went around him and went through the PA and I talked to the surgeon myself and he told me, yes, they can do it.

So they were able to successfully do the liver take the tumors for my liver on both sides from my right and my left side of my liver.

- Wonderful, well, I wanna bring in Dr. Hayden to find out, you know, we've been talking about how patients should advocate for themselves.

Is there a list of questions?

What should people be asking when they go in to see their doctor?

When they're seeing these warning signs that we talked about.

- Well, you just, you definitely want to bring up any new issues or new symptoms that you're concerned about.

If your physician isn't asking the right questions you need to tell them that you do know about a family history of colorectal cancer.

You do wanna mention anything that you may have thought wasn't a big deal, but it just is in your head that like it just something isn't right.

If and again, like all the panelists have said if you are not getting acceptable answers from your provider, if they're not listening to you and you don't have a trusting open communicative relationship with your physician you need to find a different physician.

I pride myself on listening to my patients and if they are telling me something is going on that is nothing I am blowing off.

That is for sure.

So if you don't get the right answers then you do have to push and persevere until you like find the physician that is listening to you.

- Thank you, well, about one in four patients diagnosed with CRC had a family history of colon cancer, Dr. Rogers, what drew you to study and speak out about colorectal cancer disparities?

- Yeah, so growing up in the Black community, I'd never heard about colorectal cancer I only heard about prostate cancer for Black men and breast cancer for Black women.

So I'm from North Carolina, rural North Carolina, like chicken houses.

And, so we're really big on family really big on family reunions.

And so in the summer of 2009 we were having a family reunion, having a great time doing some things, increasing our risk for colon cancer such as eating hot dogs.

And they may have been some alcohol consumption.

There may have even been some smoking, but there was some things that we did that decreased our risks such as dancing, physical activity, such as the jackpot slide, the electric slide.

- [Liz] So, did it weight out?

Did it balance out?

- Yeah, it definitely balanced out.

And so at that family reunion we had noticed that my aunt had lost a lot of weight.

So we just figured, you know maybe she's eating better, which is fantastic.

We fast forward about three or four months.

And she was misdiagnosed five to seven times from two major hospital systems in North Carolina with stage four CRC.

And so at that time as well she was diagnosed for the first time about the multiple misdiagnosis at age 52.

And so, you know we're having this conversation and we heard from the videos earlier to debate about 45 versus 50.

And we heard about the disparities in terms of Black people getting it early at a more advanced stage.

You know, my aunt may still be here today if she was able to get diagnosed before, you know at 50 or earlier.

So thankfully I was able to see my aunt drive through this disease for eight years.

You know, I saw her have a bag asked me bag that was mentioned earlier.

I saw her be bedridden.

I started live on our own.

I saw it spread to her brain and her coming out of the brain surgery.

And said I'll see you at the family vacation in Vegas next month.

And she was at a family vacation in Vegas that next month.

And so, you know, that's why this issue is such a big deal to me, such that as of today I actually launched the Colorado Cancer Equity Foundation to do some things about these disparities that exist not only among Black men that have been facing the highest death rates for CRC for more than 25 years, but other individuals that have faced so many injustices, whether it be those under 50 you know, those under 50 American-Indians, et cetera - What do you think your aunt would say if she could see how much you've done to try and help other people that are in this situation?

- She will be crying in joy.

She would say, you gotta be ashamed of yourself out here representing like this for the community of Sanford and Pittsboro North Carolina.

And she would just say, keep up the great work you're doing, God's work.

- She'll be really proud.

- Absolutely.

Well, thank you so much.

Dr. Hayden, outside of early detection screening how can people lower their risk for CRC?

- So like what has already been alluded to so increasing healthy fats and protein in your diet, avoiding processed foods, red meats, you know, stopping smoking, moderate alcohol intake, and then physical activity.

All of those things can really help.

There's only a few things we have control over.

That's either getting screened or it's controlling the habit health habits that we do have something to say about.

So getting out there and exercising when you can, eating healthy, obviously stopping smoking and then also the things that's come up tonight knowing your family history as well and asking those questions and then really persevering as your own patient advocate and also the advocate for your family members.

- We've heard a lot about misdiagnosis.

Can you tell us, is that something that's becoming less and less common these days with modern technology?

- Well, I think that's why we need to get the word out about how common colorectal cancer is.

It's the third, most common cause of cancer and cancer related death in the United States and it's happening in younger people.

So getting the word out about symptoms, about the proper ages to get screened and the different screening options are so important.

And for me, I know the buck stops with me.

If I, as a colorectal surgeon if I'm not the one that's recommending a colonoscopy to a patient that's coming in describing symptoms that could be suspicious for a cancer like who is gonna do this.

So misdiagnosis, hopefully with getting more and more public outreach and education out there is the most important thing.

And then hopefully these terrible stories of misdiagnosis the end, you know, you can say common things are common.

So when a 90 year old is coming in with severe abdominal pain and bleeding we're gonna go through like 20 reasons what it is before we ever get to colorectal cancer.

I just happen to be completely obsessed with it and very sensitive to it.

So I'm gonna be doing this, you know the scope immediately, hopefully this is misdiagnoses and these long journeys are becoming less and less common.

- I hope so as well.

Well, Herbert from Columbia South Carolina submitted this question on our website.

He wants to know.

He says, I recently heard that Black men are more likely to receive punctures of the colon from colonoscopies.

Is this true and is there any data to support this Dr. Rogers?

- So that's a great question.

Unfortunately, or thankfully rather that is false information.

Colonoscopies have been around since the 70s and thankfully in regards to punctures, tears, et cetera, the percentage of individuals that are happening to them is less than 10% and that's for everybody.

- Wow and so if people have questions like that where can they find that information?

Should they just be Googling it or what's the best way to get factual information about that?

- Yeah, yeah, Google university is definitely a great resource but you have to be aware of what these resources are.

If you know, if, you know huntsmancancerinstitute.com for instruments that might not be correct.

It should be correctly on the web.

But if, you know, you wanna definitely have some legit confirmed resources that you are able to use to make your decision versus hearing from uncle Tom on the street.

- All right, and then I just wanna go back around to make sure that we get caught up with this but you talked about the family reunion and all the good food and all of that.

And then Dr. Hayden talked about having a healthy lifestyle.

Have you made changes?

- Me personally?

- Yes.

- Oh, absolutely, absolutely.

So you can look at me and tell I like to eat, but no I also like to work out like, you know heavy lifting, power lifting, et cetera.

So for me being, even in this work myself, you know I used to love ribs.

I had to cut back on ribs 'cause that's red meat.

You know, I grew up eating bologna with the eggs cut in the middle, which is a process food.

I mean, I don't eat that now, but back in the day I wouldn't had no idea that things like that, potted meat et cetera, were increasing my risk for colorectal cancer.

So, you know, for me personally I'm definitely eating more clean, trying to lean more towards organic food.

'Cause it more like it doesn't have hormones in it bacon, which is fantastic.

Cutting back on that.

'Cause that increases your risk tremendously 'cause that's also a process item leaning towards a more plant-based diet has also been big for me but more importantly, just trying to do the opposite of the things that I know increase my risk.

- Well, we have some more questions from the audience and from viewers, AJ from Draper wants to know how long does it take for colorectal cancer to develop in the body?

- Oh this is a new question.

Okay, I'm gonna pass this on to Dr. Hayden.

- I thought you might be.

So colon cancers actually are a very slow growing cancer.

So it takes anywhere from seven to 10 years for a typical polyp to become a cancer.

And that's really how we base our screening timeframes to you know, if you do have a colonoscopy and a polyp is removed, then you may need a colonoscopy in three or five years just to make sure that there's no other polyps that were found and that the polyps that were removed were completely removed.

But if you do have a polyp again these polyps are really small for the most part and may not give you symptoms.

That's, what's so important about getting the screening colonoscopy, but larger polyps and smaller tumors, cancer give you symptoms.

So that's when you know paying attention to some symptoms comes into place.

But these what's fortunate is these are slow growing tumors.

And we have several years before a polyp becomes a cancer.

- Dr. Rogers, sorry for the curve ball before.

But we do have another question from a viewer McKayla from Edwardsville, Illinois wants to know how can families cope and support their loved ones who are dealing with CRC?

- Wow, that's a good one.

Thanks for that question, McKayla.

So more than likely you need to do what you don't think you need to do, you think you want to ask a lot of questions you may not need to do that.

You just need to be just be there for them and be there for them in whatever way that looks like.

So that means, you know, taking them to treatment.

If that means, you know getting started a meal train for them.

If that means, you know, just being there to just listen to them, if they need to cry or anything, support is huge throughout this park and throughout this process.

- All right, thank you so much.

Well, I have learned so much from this discussion and I hope that you have too.

Dr. Rogers, what are the key takeaways that you want people to remember tonight?

- So, two things.

So one I think is important for all of our viewers to realize that cancer is a word, not a death sentence.

Two, it's important for everyone to realize that CRC is a preventable, beatable and treatable disease that no one has to die from.

- Absolutely, and Dr. Hayden, what do you hope that people will take away from this discussion?

- I think that understanding the symptoms and what to look out for is extremely important.

That age is now no longer now like the cutoff where if you are under 50, that means you should not get a colonoscopy.

That's absolutely untrue.

So for African-Americans the age is now 45 and that's only if you have no symptoms, if you're having symptoms you should see your primary care provider seek out a gastroenterologist or a colorectal surgeon.

We will either do the colonoscopy for you or your primary care physicians will set you up and then finally be your best advocate, advocate for yourself and your family members.

If you're not feeling well, if something doesn't feel right you have to speak up and then don't stop until someone is actually listening to you.

- And Shannon, what do you want people to take home with them and remember, and share with their family members about this?

- The first thing that I want to say is that we mentioned is that this is happening younger.

I want to stress the fact that we have children fighting stage four of this disease.

So it is important for parents to examine their child's poop to know if they're having symptoms to talk to them to ask them questions because that could have saved my life.

The other thing that saved my life was that in high school I did Biology and my science teacher discussed what the signs and symptoms of colon cancer were.

So education is the other thing that's important, of course as in my story, being your own advocate we in the African-American or Black community we feel that we can't ask the doctors questions because we're not doctors, but it is our body.

And we know our body better than anyone else.

When you have a car and there's a little rattling you know that there's a rattling and the mechanic might not even hear it, but you know there's a rattling and you will make sure that the mechanic looks at it.

We have to treat our bodies the same way.

And we also, what I try to do is I try to live my life and to appreciate my life.

Cancer's not a death sentence.

It put my life on pause but it did not stop me from living my life or having a successful career or being happy despite long-term effects.

But I want people to know that your life doesn't end with cancer, whether through death, you can beat it.

And it doesn't mean that you can't achieve your dreams and your goals.

- Candace, what are the-- - Live for life - Absolutely, Candace, what are the final thoughts that you'd like to leave with folks tonight?

- We are a family full of secret keepers.

And so as Dr. Rogers alluded to, we have come up with a tagline at the Blue Hat foundation, family secrets kill families.

And that is because we keep secrets of domestic violence, incest, alcoholism, drug abuse, and everything else.

This is not the time to keep secrets.

What you don't tell your family members about what health issues, were in family has the potential to kill your family lineage.

So stop keeping secrets and talk to your family about health issues that run in the family so that you can watch your grandchildren grow and their children grow and so on and so on.

- And as we wrap up, Agnes what would you like to leave with people tonight?

- I would just, I guess the biggest thing for me, if for some reason you do have a colorectal cancer is not to give up.

I keep fighting to the very end.

There will be days where you would just feel helpless and hopeless, but there's a powerful God that can help you through that.

And also ask for help if you're going through cancer.

That's my experience, lifeline community.

My church community has been helping me and my family.

I don't have family here in the United States.

So that has been a struggle but my church community has been helping me a lot.

My work community also at work they have been helpful as well and friends and just take the time not to keep correcting or it's not the time to change things but just to listen, listen to the person.

- All right, and I thank you so much for talking with us and sharing intimate details of your journey, your struggle and your stories.

And I know that people have been motivated to take charge of their health.

Thank you so much for being here tonight and thank you all for your time.

For more information about colorectal cancer you can head to our website, pbsutah.org slash crc.

Thank you for joining us.

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