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What Can Patients Do to Access Better Colon Cancer Care?

What Can Patients Do to Access Better Colon Cancer Care? from Patient Empowerment Network on Vimeo.

What can patients do to access quality colon cancer care? Dr. Suneel Kamath shares tips on how to advocate for yourself, the importance of quality care versus convenient care, and colon cancer resources.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

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Why Are Colon Cancer Cases in Young People on the Rise?

Why Are Colon Cancer Cases in Young People on the Rise?

What Are Common Colon Cancer Health Disparities?

What Are Common Colon Cancer Health Disparities?

What Are Colon Cancer Screening Guidelines?

What Are Colon Cancer Screening Guidelines?


Transcript: 

Katherine:  

If patients feel like they’re not receiving good care or they feel like they’re being treated unfairly, what steps should they take to access better overall care?  

Dr. Kamath:  

That’s a touchy one. It makes me sad that that even happens, but it does. I would say just never be afraid to be an advocate for yourself. To me, it’s your life and the consequence of bad healthcare, unfortunately, is not going to be on those providers. It’s going to be on you. Unfortunately, I do hear from a lot of people they worry about burning bridges, or annoying someone, or angering the doctors that they’re working with. I would tell them, “Don’t worry about that.” I don’t think people need to care about my feelings or the doctor’s feelings about the situation. 

You need to make sure you’re getting the best healthcare possible. Always feel comfortable getting a second opinion, going to a bigger center. I always recommend go to the main hospitals in your area. In the U.S. especially, I think we’re too focused on convenient healthcare and not the quality of the healthcare. I would definitely advocate, even if it takes you an hour to drive downtown to Duke or Johns Hopkins in your area, or the Cleveland Clinic, or the Mayo Clinic, or whatever, it’s worth that time compared to the person who just might be five or 10 minutes from you.  

Katherine:  

Right. Are there resources available now that might be useful for people who need, want more information?  

Dr. Kamath:  

Yes, are you talking about things that they could find online or read about? It’s in terms in of accessing care or just generally about … 

Katherine:  

Yeah, accessing care.  

Dr. Kamath:  

Yeah. I think there, again, I would go back to the American Cancer Society. The other ones that are really great, too, are – for colorectal cancer, especially, there are a number of really great patient advocacy organizations. The two that are coming to mind are the Colorectal Cancer Alliance and then Fight CRC. Both of them have phenomenal resources as far as patients who have gone through the whole journey and various phases of the journey. What I love for them, too, is usually there’s somebody that can represent your area in those settings, in those support groups and whatnot.  

I definitely think they’re a great resource in helping people find out who are the best doctors in your area. How did you get connected with them? Unfortunately, we all have phone numbers online and whatnot to find us. But we all know when you call them you end up in this interminable loop, it seems like, sometimes to get an appointment. It’s hard to navigate it all. I think a lot of times these patient advocacy organizations can be great bridges to both finding who the right people are and how do you best get in with them.  

What Are Common Colon Cancer Health Disparities?

What Are Common Colon Cancer Health Disparities? from Patient Empowerment Network on Vimeo.

What are common colon cancer health disparities? Dr. Suneel Kamath explains what a health disparity is, the groups impacted by these differences, and how the medical community addresses them in colon cancer care.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

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What Is the Role of Genetic Testing in Colon Cancer Care?

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What Are Colon Cancer Screening Guidelines?


Transcript: 

Katherine:  

Disparities in healthcare can impact a patient’s experiences and outcomes. What are some common health disparities?

Dr. Kamath:  

Yeah, there are so many. I think with colorectal cancer in particular, access is really a huge one. People who are in underserved communities, often people of color, have less access due to systemic racism in healthcare and in insurance, lack of opportunity with employment. I’ve always thought having a purely employer-based healthcare system is not the smartest idea.  

People who are often the sickest are the least able to work and the least able to maintain their health insurance. It does a disservice to our population to have thing set up that way. Yeah, I think that’s a huge barrier. I think there’s also a lot of stigma, especially amongst people of color, around colonoscopies, things to do with your colon and rectum and whatnot. I think that’s something we also need to work on, to normalize that as something that should be done regularly and that this isn’t a bad thing. It’s just something we all have to do. 

Katherine:  

Right. Well, what is being done by the medical community to address these imbalances? 

Dr. Kamath: 

I’ve really seen, I think, a legitimate push towards community outreach in the last few years. Unfortunately, we’ve known about these disparities for decades and I think a lot has been said about addressing them since the ‘80s and ‘90s.  

But to be honest with you, I don’t think very much was really done until recently. What I’ve seen is a really concerned effort to put resources into identifying what are those barriers. Where is the distrust coming from? Who are trusted sources in your community? We’re tapping into pastors and preachers and the barbershop guy. You don’t ask people, “Who do you trust to get your information from?” If you don’t ask the question you’re never going to know. 

Recently, I think we’ve actually really done the work to find out what is going to motivate you to get something done? What’s going to make it feel normal to you and having trust healthcare? We’re seeing a lot more engagement, I think, as a result of that.  

Katherine:  

Are members of the medical community going out into the African American community to find out who they should be talking to?  

Dr. Kamath:  

We have been, actually. I reviewed a grant – just to speak of Cleveland Clinic in particular, a couple of years ago that the project that is being funded by it is still ongoing. Basically, we conducted focus groups of people at church. After the service was done, we conducted a focus group to ask them, “What are your thoughts about screening?” It was for colon cancer and for others as well. “What are your thoughts about this? What are your fears about it? What are things we could do to make you feel more comfortable with accessing this part of your care? Who do you go to to get trusted information?”  

As a result of that, doing it in their community, in the church setting where they feel safe and comfortable, we saw significant spike in the number of people who came for colonoscopies, for mammograms. We do PSA testing there and we set up a lab there. We found a big spike in the number of people who got those things done and we identified quite a few people who had cancer at early stages and we were able to cure them at much earlier stages than otherwise.  

What Is the Role of Genetic Testing in Colon Cancer Care?

What Is the Role of Genetic Testing in Colon Cancer Care? from Patient Empowerment Network on Vimeo.

Dr. Suneel Kamath discusses the role of genetic testing in managing colon cancer. From understanding hereditary mutations to the significance of family history, learn why awareness is important.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

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What Are Common Colon Cancer Health Disparities?


Transcript: 

Katherine:

Where does hereditary testing or genetic counseling come in as a screening tool? 

Dr. Kamath:

Hereditary testing, I think, is so important. I wouldn’t say it’s the best screening tool. It’s often best once somebody has already been diagnosed and you know that the disease is in the family. I do think it’s really, really important for people who have a family history of any cancer. Again, I go back to the fact that I think a lot of us don’t really know our family histories. I find for a lot of people when they’re first diagnosed with a cancer, that’s the first time they go talk to Mom and Dad, and to Uncle Joe Aunt Shirley, and they say, “Hey, do we have anything like this in the family?” 

And it actually turns out – I often hear the second and third visits, “It actually turns out I do have a strong family history of cancer.” I just urge people that it’s not an easy thing to talk about, but have that conversation with your family. Also, be open to sharing that information if it was you because these things have heavy implications on everyone in your entire family.  

Also, importantly, it doesn’t have to be the same cancer. A lot of people think it’s only if you have a family history of colorectal cancer that you might be at increased risk of others. But there are many syndromes that link uterine with colorectal and stomach and breast and whatnot. Being aware of any family history of cancer can really help us trigger the right genetic testing to find out if you have a hereditary syndrome or not.  

What Are Colon Cancer Screening Guidelines?

What Are Colon Cancer Screening Guidelines? from Patient Empowerment Network on Vimeo.

What are the guidelines for colon cancer screening? Dr. Suneel Kamath explains the current recommendations, including the appropriate screening age and reviews risk assessment based on factors such as family history and race. 

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

Download Resource Guide

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What Is the Role of Genetic Testing in Colon Cancer Care?


Transcript: 

Katherine:  

It seems like the suggested ages for screening may vary based on gender and race and family history. What are the current screening guidelines?

Dr. Kamath:

The current screening guidelines that are unfortunately due this rise, there is now recommendation for starting colon cancer screening at age 45. That’s really for everybody. There are certain people that really should be screened even earlier. We definitely know that the black community is affected at a higher rate. There are some professional societies, like the AGA or ACG, that actually recommend starting even earlier in the black community, maybe even by age 40. 

And then, the other thing I always try to emphasize is with this is the usual screening guidelines that we talk about are for what we call the average risk population. I do think that we overestimate how many people are average risk. One of the things that I think is not talked about as much is that if you have a family history of even polyps – high risk polyps – that also means that your family members should get screened earlier, 10 years earlier, than the age that you were found to have a high-risk polyp.  

But my experience has been most people don’t share with their families that they had those. Let’s say I had a colonoscopy done one day and they found those, they get taken out, and they just say, “Oh, come back in three years,” instead of 10. As far as I’m concerned, that’s where it ends. But actually, the fact that I had those polyps has implications for my siblings, for children, and everything. I don’t think most people are in the habit of disseminating that information. As a result of that, a lot of people are probably at increased risk and they’re really not aware of it.

Katherine:

Yeah. Where can patients find the most up-to-date information regarding screening?

Dr. Kamath:

The best resource, to me, is the American Cancer Society, their websites. They’re highly reliable, they’re easy to understand, and I find that they’re very balanced. They’re not going to be overly pushing one side or the other. But they’re going to be evidence-based. As we all know, there is so much fake news and misinformation out there, especially when it comes to health. I think having a resource you could really trust and understand is key and the American Cancer Society, you find, is an excellent resource.  

Why Are Colon Cancer Cases in Young People on the Rise?

Why Are Colon Cancer Cases in Young People on the Rise? from Patient Empowerment Network on Vimeo.

Why are colon cancer cases rising among young people? Dr. Suneel Kamath delves into the risk factors, early symptoms of colon cancer, and the importance of consulting with your doctor.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

Download Resource Guide

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Research Advances in Colon Cancer Screening and Detection

Research Advances in Colon Cancer Screening and Detection

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What Is the Role of Genetic Testing in Colon Cancer Care?

What Is the Role of Genetic Testing in Colon Cancer Care?


Transcript: 

Katherine:

Well, colon cancer cases in young people are on the rise. Do we know why this is happening?  

Dr. Kamath:  

Yeah, honestly, we really don’t to this point. We have a lot of hypotheses that we’re investigating to get to the bottom of that but it does seem like some of the usual risk factors for developing colon cancer later in life are still true. Obesity, sedentary lifestyle, a diet that’s high in red meat, processed foods. I do think to some extent the fact that we’re doing these things earlier and earlier in our lives. I think we’re seeing that the rates of obesity and overweight are not just increasing but they’re also occurring in people’s teenage years and in their 20s and 30s.  

It’s a time dependent process. I do think some people being at a higher than healthy body weight and leading a sedentary lifestyle starting at age 10 may lead to a cancer by age 30 or 40. I do think that’s part of it. But I do think there’s probably some other undescribed factor. We know plenty of people who come in who are runners and healthy, and honestly they’re healthier than I am to be honest with you and they still develop this for no reason. I am sure there’s some other exposure that we still need to identify.  

Katherine:  

What symptoms should young people be paying attention to?  

Dr. Kamath:  

It’s a great question. Fortunately, with early onset colorectal cancer, it’s much more likely to be on the left side of the colon, or closer to the exit, if you will. 

The good thing about that is the symptoms of it can be a little bit easier to detect. A lot of people describe to me that they have more blood in their stool. They found that they were straining harder than normal or having had a thinner stool caliber. I would also emphasize that these are often symptoms that go on for weeks and months at a time. All of us might eat the wrong thing for a day or two and get some stomach issues here or there so I don’t want people to overreact to every little symptom.  

Certainly, if you’re having constipation that’s going on for several weeks in a row, that’s often not going to be a benign thing. If you have that type of symptom and it’s persistent, definitely talk to your doctor and get it checked out.  

Research Advances in Colon Cancer Screening and Detection

Research Advances in Colon Cancer Screening and Detection from Patient Empowerment Network on Vimeo.

What are the latest research advances in colon cancer screening and detection? Dr. Suneel Kamath explores cutting-edge screening modalities, including a noninvasive test and innovative blood tests.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

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What Can Patients Do to Access Better Colon Cancer Care?


Transcript: 

Katherine:   

The American Society of Clinical Oncology annual meeting just wrapped up. What were the highlights from the meeting related to colon cancer screening and detection?  

Dr. Kamath:  

This was some evidence that came out prior to the meeting but there was quite a bit of buzz about it at ASCO itself. There’s a number of new screening modalities that have obtained their FDA approvals or have had major data releases for, which have looked extremely promising. The first one that comes to mind is the ColoSense test. This is an RNA-based stool test. It’s a stool test similar to Cologuard but it’s a slightly different technology where it’s using RNA instead of DNA like Cologuard did.  

Similar to many of the other tools, it’s showing excellent performance in terms of how sensitive it is to detecting colon cancer. They showed in a prior publication they could detect almost 95 percent of colorectal cancers. It was also a rather specific test, too, so 88 percent specificity. What this is telling us is that this test if very good at detecting colorectal cancer when it’s there but also, equally importantly, it’s very good at not giving you a false positive, which is also very important with any screening test.  

So, we’re really excited to see that. We’re increasingly thinking about noninvasive ways, beyond colonoscopy, that we can improve colon cancer screening.  

Katherine:  

How does it compare with Cologuard, then?  

Dr. Kamath:  

This one is called ColoSense, yeah. I would say both of these numbers in terms of the sensitivity, meaning that’s the level of detection. If someone does have colorectal cancer, how well do you detect that. That sensitivity of almost 95  percent is definitely a little bit higher. Specificity is also, I would say, a little bit higher. I do think that this test would likely both detect more colorectal cancers that Cologuard would and it would also give you fewer false positives at the same time.  

Katherine:  

And is this going to be something that people can take the test at home?  

Dr. Kamath:  

Yes. This should be because it says a stool-based test. I’m sure a lot of the logistics would still need to be worked out, as with any new test. Having the kit sent to the primary care doctors’ offices and things like that. Arranging for that infrastructure, I’m sure, will take some time. But, yes, this test is pretty easy and simple to do. It should be the same as sending in any other stool-based test into a lab.  

Katherine:  

Is there other research you’re excited about?  

Dr. Kamath:  

Yes. Another one that I’m really excited about is there are these blood-based screening tests as well. A couple are coming to mind. One is from Guardant Health. They have been developing this assay specific for colorectal screening for some time. They’ve also been talking about their data for a blood-based test.  

For them, the number is also still quite good. They’re saying that the sensitivity is about 83%, so maybe a little bit lower than the RNA one but specificity is 90 percent. So, maybe actually a little bit better with that. So, I’m very excited about this one because this is a blood-based test that could be done at a doctor’s office. We all know practicalities are if you can just order a test in the lab and have someone get a draw the same as getting your lipid panel checked or other things that are routinely done, that’s very easy to do and you can be pretty certain someone’s going to follow  through on that.

Whereas, we know with these stool-based tests, it’s about a third to half of patients, even though you send them home with a kit, you may not get the specimen back at all.  

A Patient’s Perspective | Participating in a Clinical Trial

A Patient’s Perspective | Participating in a Clinical Trial from Patient Empowerment Network on Vimeo.

Colorectal cancer survivor Cindi Terwoord recounts her clinical trial experience and explains why she believes patients should consider trial participation.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Cindi Terwoord is a colorectal cancer survivor and patient advocate. Learn more about Cindi, here.

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Transcript:

Katherine Banwell:    

Cindi, you were diagnosed with stage IV colorectal cancer, and decided to participate in a clinic trial. Can you tell us about what it was like when you were diagnosed?

Cindi Terwoord:        

Yeah. That was in September of 2019, and I had had some problems; bloody diarrhea one evening, and then the next morning the same thing. So, I called my husband at work, I said, “Things aren’t looking right. I think I’d better go to the emergency room.”

And so, we went there, they took blood work – so I think they knew something was going on – and said, “We’re going to keep you for observation.” So, then I knew it must’ve been something bad. And so, two days later, then I had a colonoscopy, and that’s when they found the tumor, and so that was the beginning of my journey.

Katherine Banwell:    

Mm-hmm. Had you had a colonoscopy before, or was that your first one?

Cindi Terwoord:        

No, I had screenings, I would get screenings. I had heard a lot of bad things about colonoscopies, and complications and that, so I was always very leery of doing that. Shame on me. I go for my other screenings, but I didn’t like to do that one. I have those down pat now, I’m very good at those.

Katherine Banwell:    

Yeah, I’m sure you do. So, Cindi, what helped guide your decision to join a clinical trial?

Cindi Terwoord:        

Well, I have a friend – it was very interesting.

He was probably one of the first people we told, because he had all sorts of cancer, and he was, I believe, one of the first patients in the nation to take part in this trial. It’s nivolumab (Opdivo), and he’s been on it for about seven years. And he had had various cancers would crop up, but it was keeping him alive.

And so, frankly, I didn’t know I was going to have the option of a trial, but he told me run straight to Cleveland Clinic, it’s one of the best hospitals. So, I took his advice. And the first day the doctor walked in, and then all these people walked in, and I’m like, “Why do I have so many people in here?” Not just a doctor and a nurse. There was like a whole – this is interesting.

And so, then they said, “Well, we have something to offer you. And we have this immunotherapy trial, and you would be one of the first patients to try this.”

Now, when they said first patient, I’m not quite sure if they meant the first colon cancer patient, I’m not sure. But they told me the name of it, and I said, “I’m in. I’m in.” Because I knew my friend had survived all these years, and I thought, “Well, I’ve gotten the worst diagnosis I can have, what do I have to lose?” So, I said, “I’m on board, I’m on board.”

Katherine Banwell:    

Mm-hmm. Did you have any hesitations?

Cindi Terwoord:        

Nope. No, I’m an optimistic person, and what they assured me was that I could drop out at any time, which I liked that option.

Because I go, “Well, if I’m not feeling well, and it’s not working, I’ll get out.” So, I liked that part of it. I also liked, as Dr. Funchain had said, you go in for more visits. And I like being closely monitored, I felt that was very good.

I’ve always kept very good track of my health. I get my records, I get my office notes from my doctor. I’m one of those people. I probably know the results of blood tests before the doctor does because I’m looking them up. So, I felt very confident in their care. They watched me like a hawk. I kept a diary because they were asking me so many questions.

Katherine Banwell:    

Oh, good for you.

Cindi Terwoord:        

I’m a transcriptionist, so I just typed out all my notes, and I’d hand it to them.

Katherine Banwell:    

That’s a great idea.

Cindi Terwoord:        

Here’s how I’m feeling, here’s…And I was very lucky I didn’t have many side effects.

Katherine Banwell:    

In your conversations with your doctor, did you weigh the pros and cons about joining a trial? Or had you already made up your mind that yes, indeed, you were going for it?

Cindi Terwoord:        

Yeah, I already said, “I’m in, I’m in.” Like I said, it had kept my friend alive for these many years, he’s still on it, and I had no hesitation whatsoever.

I wish more people – I wanted to get out there and talk to every patient in the waiting room and say, “Do it, do it.”

I mean, you can’t start chemotherapy then get in the trial. And if I ever hear of someone that has cancer, I ask them, “Well, were you given the option to get into a trial?” Well, and then some of them had started the chemo before they even thought of that.

Katherine Banwell:    

Mm-hmm. So, how are you doing now, Cindi? How are you feeling?

Cindi Terwoord:        

Good, good, I’m doing fantastic, thank goodness, and staying healthy. I’m big into herbal supplements, always was, so I keep those up, and I’m exercising. I’m pretty much back to normal –

Katherine Banwell:

Cindi, what advice do you have for patients who may be considering participating in a trial? 

Cindi Terwoord:

Do it. Like I said, I don’t see any downside to it. You want to get better as quickly as possible, and this could help accelerate your recovery. And everything Dr. Funchain mentioned, as far as – I really never brought up any questions about whether it would be covered. 

And then somewhere along the line, one of the research people said, “Well, anything the trial research group needs done – like the blood draws – that’s not charged to your insurance.” So, that was nice, that was very encouraging, because I think everybody’s afraid your insurance is going to drop you or something.  

And then the first day I was in there for treatment, a social worker came in, and they talked to you. “Do you need financial help? We also have art therapy, music therapy,” so that was very helpful. I mean, she came in and said, “I’m a social worker,” and I’m like, “Oh, okay. I didn’t know somebody was coming in here to talk to me.” 

But that was all very helpful, and I did get free parking for a few weeks. I mean, sometimes I’d have to remind them. I’d say, “It’s costing me more to park than to get treated.” But, yeah, like I said, I’m a big advocate for it, because you hear so many positive outcomes from immunotherapy trials, and boy, I’d say if you’re a candidate, do it. 

Katherine Banwell:

Dr. Funchain, do you have any final thoughts that you’d like to leave the audience with? 

Dr. Pauline Funchain:

First, Cindi, I have to say thank you. I say thank you to every clinical trial participant, everybody who participates in the science. Because honestly, whether you give blood, or you try a new drug, I think people don’t understand how many other lives they touch when they do that.  

It’s really incredible. Coming into clinic day in and day out, we get to see – I mean, really, even within a year or two years, there are people that we’ve seen on clinical trial that we’re now treating normally, standardly, insurance is paying for it, it’s all standard of care. And those are even the people we can see, and there are so many people we can’t see in other centers all over the world, and people who will go on after us, right?  

 So, it’s an amazing – I wouldn’t even consider most of the time that it’s a personal sacrifice. There are a couple more visits and things like that, but it is an incredible gift that people do, in terms of getting trials. And then for some of those trials, people have some amazing results. 

And so, just the opportunity to have patients get an outcome that wouldn’t have existed without that trial, like Cindi, is incredible, incredible. 

What Are the Risks and Benefits of Joining a Clinical Trial?

What Are the Risks and Benefits of Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

Why should a cancer patient consider a clinical trial? Dr. Pauline Funchain of the Cleveland Clinic explains the advantages of clinical trial participation.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

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Transcript:

Katherine Banwell:

Why would a cancer patient consider participating in a clinical trial? What are the benefits? 

Dr. Pauline Funchain:

So, I mean, the number one benefit, I think, for everyone, including the cancer patient, is really clinical trials help us help the patient, and help us help future patients, really.  

We learn more about what good practices are in the future, what better drugs there are for us, what better regimens there are for us, by doing these trials. And ideally, everyone would participate in a trial, but it’s a very personal decision, so we weigh all the risks and benefits. I think that is the main reason.  

I think a couple of other good reasons to consider a trial would be the chance to see a drug that a person might not otherwise have access to. So, a lot of the drugs in clinical trials are brand new, or the way they’re sequenced are brand new. And so, this is a chance to be able to have a body, or a cancer, see something else that wouldn’t otherwise be available.  

And I think the last thing – and this is sort of the thing we don’t talk about as much – but really, because clinical trials are designed to be as safe as possible, and because they are new procedures, there’s a lot of safety protocols that are involved with them, which means a lot of eyes are on somebody going through a clinical trial.  

Which actually to me means a little bit sort of more love and care from a lot more people. It’s not that the standard of care – there’s plenty of love and care and plenty of people, but this doubles or triples the amount of eyes on a person going through a trial. 

Katherine Banwell:

Yeah. When it comes to having a conversation with their doctor, how can a patient best weigh the risks and benefits to determine whether a trial is right for them? 

Dr. Pauline Funchain:

Right. So, I think that’s a very personal decision, and that’s something that a person with cancer would be talking to their physician about very carefully to really understand what the risks are for them, what the benefits are for them. Because for everybody, risks and benefits are totally different. So, I think it’s really important to sort of understand the general concept. It’s a new drug, we don’t always know whether it will or will not work. And there tend to be more visits, just because people are under more surveillance in a trial.  

So, sort of getting all the subtleties of what those risks and benefits are, I think, are really important. 

Katherine Banwell:

Mm-hmm. What are some key questions that patients should ask? 

Dr. Pauline Funchain:

Well, I think the first question that any patient should ask is, “Is there a trial for me?” I think that every patient needs to know is that an option. It isn’t an option for everyone. And if it is, I think it’s – everybody wants that Plan A, B, and C, right? You want to know what your Plan A, B, and C are. If one of them includes a trial, and what the order might be for the particular person, in terms of whether a trial is Plan A, B, or C. 

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Millennial Stage IV Colon Cancer Survivor Urges Earlier Screening

Millennial Stage IV Colon Cancer Survivor Urges Earlier Screening from Patient Empowerment Network on Vimeo.

 Stage IV colon cancer patient Ashley received her diagnosis at age 33. Watch as she shares her story starting with a routine physical, surgery and treatments that she endured, and lessons learned during her cancer journey.

Special thanks to our partner, Colorectal Cancer Alliance, for helping to make this vignette possible.


Transcript:

My name is Ashley, and I’m from West Virginia but currently reside in Nebraska. In February 2021, I was diagnosed with stage IV colon cancer at the age of 33.

I decided I wanted to join the Air National Guard and had to complete a physical examination. After visiting a hematologist/oncologist for dangerously low iron and hemoglobin levels, I went in for a routine physical a few months later. The physician’s assistant found a mass in my stomach area, and they sent me for a CT scan. The next morning, my husband Josh got the call that I missed. The CT scan had shown three different masses – and was likely cancer.

I was dumbfounded, shocked, and then I felt the tears rolling down my face. My doctor informed me, “You need surgery immediately, since the tumors are getting close to completely closing up your colon.” I also had a tumor on my liver.

I had surgery to remove the tumor before it closed my colon, but the surgeon couldn’t get to the tumor on my liver. After surgery, they told me the three most important things to do while there that would get me home sooner were eating with no issues, walking, and having a bowel movement.

Finally after two surgeries where my liver, gallbladder, one-quarter of my colon, part of my small intestines, appendix, two large tumors, and a lymph node that turned into a tumor was removed, as well as 12 rounds of chemo.

I received news in March 2022 that my cancer is back but will not be as aggressive as it was before. I am taking things one step at a time and one day at a time, trying to stay optimistic at each step.

When someone gets cancer – the “journey” is never over. The fear NEVER goes away. Even when you are declared to have no evidence of disease, there is a possibility cancer can come back. And if it does come back, the chance of fighting and winning again gets slimmer.

If you know someone that has cancer – be kind – just because they don’t look sick, doesn’t mean they aren’t having challenges. Just because their numbers and scans are good doesn’t mean they are in the clear for the rest of their life. Always, always – BE KIND!

Some of the things I have learned during my colon cancer journey are:

  • Get your colon cancer screenings on time. Or if you’re too young like me, listen closely to what your body tells you and get annual physicals.
  • Say yes to those who want to help by bringing food, checking in, or donating. We are amazed by the support we’ve received from friends, family, and complete strangers.
  • Fighting the cancer fight is much easier knowing how many people are on our side and how much love there is for us out there.
  • Advocate for yourself! Do research on your specific type of cancer and mutations. If you feel you are being told something that just doesn’t seem right, question it – push the bar until you can’t anymore! There are so many options out there when it comes to cancer and survival, you just need to find the right person that will take care of you!

These actions are key to staying on your path to empowerment.

Advice From a Young-Onset Colorectal Cancer Patient

Advice From a Young-Onset Colorectal Cancer Patient from Patient Empowerment Network on Vimeo.

Colorectal cancer patient Jessica was surprised but not shocked even after a diagnosis under the age of 40. Watch as she shares her journey from symptoms, diagnosis, her advice to others, and coping methods she’s found helpful for navigating her experience as a patient.

Special thanks to our partner, Colorectal Cancer Alliance, for helping to make this vignette possible.


Transcript

My name is Jessica, and I’m from Chicago, Illinois. Even though my doctors thought I was too young, I was diagnosed with colorectal cancer at age 39.

I’d been experiencing occasional rectal bleeding for about a year when I was finally referred for a colonoscopy.

While my doctors were convinced that I was too young for colorectal cancer, I was still worried because my grandmother died of the disease.

My doctor asked me to go in to get my colonoscopy results. My parents knew what that meant, so we went together. When the GI gave me the results, stage III rectal cancer, I felt so scared. I called my best friend, and I couldn’t even speak. We just cried together.

After I received my diagnosis, my doctor told me it’s very curable. I had a 2-inch mass in my rear. I had a CT scan to confirm the cancer had not spread followed by an MRI. And that’s when the whirlwind began.

I returned to a craft I hadn’t used much in recent years. To sort my thoughts, to update my friends and family, to document the most important year of my life, I started writing again. Beginning a blog was at once a coping mechanism for me and the best way I knew how to share this breathtaking news with friends and family I’d collected from across the country and over decades — and still conserve energy I would need to fight this fight.

Five years later, and I’m thriving.

I want to raise awareness about the rising incidence of colorectal cancer in the under-40 crowd because I was symptomatic and ignored before I was diagnosed. I know that not everyone is as lucky as me, especially young people who are often diagnosed at an even more advanced stage.

Some of the things I have learned during my colorectal cancer journey are:

  • Watch out for signs your body gives you
  • Don’t take “no” for an answer even if doctors think you’re too young for colorectal cancer.
  • Cases of young-onset colorectal cancer are increasing, and that’s why funding colorectal cancer research is so important.
  • Find something to do to help you cope. If you’re unsure whether it’s a healthy activity, ask your doctor or care team member who you trust.

These actions are key to staying on your path to empowerment.

How Can Clinical Trials Be Accessed?

How Can Clinical Trials Be Accessed?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack and patient advocate Sujata Dutta explain the benefits of participating in a clinical trial. They review important questions to ask your doctor and share advice for finding a trial.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

What Is a Clinical Trial and What Are the Phases? 

Are Clinical Trials Safe?

A Patient Shares Her Clinical Trial Experience


Transcript:

Katherine Banwell:    

Sujata, there’s clearly a lot of hesitation and misconceptions out there. What would you say to someone who’s considering a trial but is hesitant?

Sujata Dutta:  

I would say speak to your provider, speak to your doctor, and get all these myths kind of busted to say, “it’s going to be expensive” or whatever those questions are. And then, through that process also try and understand what is it that the study is trying to achieve? How is that going to be beneficial to you? So, in my instance, it wasn’t the last line of defense, it was just one of the processes or combos that would help me. And so, that was important for me to understand and then a little bit of education as well. So, I was asking, I have questions on my phone every time I meet my provider, and I did the same thing. So, I think that one of the good practices is keep your note of your questions and have those questions ready. And no question is silly, all questions are important. So, ask as many questions as you can and use that opportunity to educate yourself about it.

And maybe you realize, “No. I don’t think it’s working for me” or “I don’t think this trial is good for me.” But it’s good, important, to have that conversation with your provider, that’s what I would recommend highly.

Katherine Banwell:    

Excellent. Thank you, Dr. Pollack, if someone is interested in participating, how can they find out about what trials are even available for them?

Dr. Seth Pollack:       

Yeah. I mean, the best thing to do is to start just by asking your doctor if they know about any clinical trials. And a lot of the times the clinical trials are run at the big medical centers that may be closer to you, so you could ask your doctor if there’s any clinical trials at the big medical center even. Or I always think it’s good to get a second opinion, you could go get a second opinion at the big medical center that’s close to you and ask them what clinical trials are at your center.

And sometimes they’ll be conscious about some of the clinical trials that may be even run around the country. And you can ask about that as well.

Katherine Banwell:    

Would specialists have more information about clinical trials than say a general practitioner?

Dr. Seth Pollack:       

So, I specialize in rare cancers, so a lot of the times the general practitioners they’ve got my cell phone number, and they text me, and they say, “Hey, do you have a clinical trial going on right now?” And that happens all the time, but yeah, the specialists will usually because frankly there’s so much to know. And the general practitioners really have a lot to keep track of with all the different types of diseases that are out there. Whereas at the big centers, the specialists, part of their job is really to keep their tabs on what’s going on with the clinical trials.

So, they’re good people to ask, either your local doctor could reach out to them, or you could go get a second opinion and ask.

Sujata Dutta:  

There’s also a lot of information, Katherine, on sites such as LLS, or PEN, or American Cancer Society that they also publish a lot of information. Of course, I would recommend once you have that information then vet it by your specialist, or whatever. But if you’re interested in knowing more about clinical trials in general and some that would work for you, then those are also some places to get information from.

Katherine Banwell:    

That’s great information. Thank you, I was going to ask you about that Sujata. Well, before we end the program, Dr. Pollack, I’d like to get your final thoughts. What message do you want to leave the audience with related to clinical trial participation?

Dr. Seth Pollack:       

Yeah. I think clinical trials it can be a very rewarding thing for a lot of patients to do, I think patients really like learning about the new treatments. And I think a lot of patients really like being a part of pushing the therapies forward in addition to feeling like sometimes they’re getting a little bit of an extra layer of scrutiny, because there’s a whole extra team of research coordinators that are going through everything.

And getting access to something that isn’t available yet to the general population. So, I think there’s a whole host of advantages of going on clinical trials, but you need to figure out whether or not a clinical trial is right for you.

Katherine Banwell:    

Yeah. Sujata, what would you like to add?

Sujata Dutta:  

Absolutely, I second everything that Dr. Pollack is saying. And in my personal experience I wouldn’t say everything is hunky-dory, everything is fine. I’m going through treatment, I have chemo every four weeks, I started with chemo every week. That’s when the logistics pace was really difficult because going to Mayo every week was not easy. But anyways, as the trial progress itself every four weeks, but as I said the benefits are huge because I have labs every four weeks. I meet my provider every four weeks.

So, we go through the labs and anything amiss, I’ve had some changes to my dosage because I’ve had some changes in the labs. And so, there’s a lot of scrutiny which I like, but the flip side, for maybe some maybe like, “I have to have chemo every four weeks. Do I want to do that or not?” Or whatever. In my case, I knew it, and I signed up for it, and I’m committed to doing that for two years. And so, I’m fine with that. So, I would say all in all, I’d see more benefits of being in a clinical trial. One, you’re motivated to give back to the community. Two, you are being monitored and so your health is important to your provider just as it is to you. And so, I highly recommend being part of a trial if it works for you and if you’re eligible for one.

Are Clinical Trials Safe?

Are Clinical Trials Safe?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack explains the safety protocols in place for clinical trials, including how data is reported and protected. Patient advocate Sujata Dutta goes on to share her experience in a clinical trial.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

A Patient Shares Her Clinical Trial Experience

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?


Transcript:

Katherine Banwell:

Some patients feel that clinical trials aren’t safe, is that the case, Dr. Pollack?  

Dr. Seth Pollack:

No. I mean, we go through, as I was saying before, these clinical trials are extensively vetted. So, the safety is, of course, one of the things that we look most carefully about. But as I was saying before, like with any treatment’s cancer treatments have toxicity, that’s a common problem. So, and when you’re dealing with something brand new sometimes there is a little bit more risk. So, when you’re talking about these very early-stage Phase I trials you probably want to talk to your doctor about what sorts of toxicities you can expect and where they are in the Phase I trial. Are you the first ever to receive this new drug? And if you are nobody’s making you go in the clinical trial, so it can only help to get more information. Right? So, you should ask your team about it, you should find out. 

Most of the time there’s going to be a lot of patients that have been treated already, I mean, they can’t give you definitive data about how things are going but they can maybe say, “Hey. I’ve already treated a few patients on it, and they seem to be doing great.” 

Katherine Banwell:

So, you need to weigh the pros and cons of the trial. 

Dr. Seth Pollack:

You do need to weigh the pros and cons. Now, when you’re talking about these Phase IIs and Phase IIIs, I mean, these are drugs now that have really been vetted for their safety and we have a lot of data about it. And even the Phase Is, it’s not like these things are coming out of nowhere, they’ve been scrutinized, we really expect that they’re going to be safe but we’re doing the trial to prove it. So, it’s a good thing to ask about. 

Katherine Banwell:

Yeah, yeah. 

Sujata Dutta:

Yeah. I would also add that it’s so closely monitored that safety is a top priority, it’s front and center. So, the advantage, I think, with being on a trial is the close monitoring of the patient exactly for this reason. 

If something is amiss it’s going to be picked up as quickly as possible and you’re any issues are going to be addressed as soon as. So, I think, safety does get addressed pretty quickly.  

Katherine Banwell:

Good. 

Can data from trials even be trusted? Dr. Pollack, is that the case? 

Dr. Seth Pollack:

Well, of course, I mean, it can be trusted. Because the thing with the clinical trial data is that you really see the data and there’s all kinds of scrutiny making sure that the data is reported accurately. Now, there’s a whole other conversation we could have as to whether we could interpret the data differently. And sometimes that is an issue that comes up, but the data is reported very accurately. 

So, and there are statistics that are very well understood, and the bar is actually pretty high to say one arm of the trial was better than the other arm of the trial. So, if patients have better survival on one arm, if we say that, usually it means they did considerably better. Enough better that it wasn’t a random chance that one extra patient did better on the treatment arm. No. There were enough patients that did better that the statisticians can go through it with a fine-toothed comb. And they can be absolutely sure up to exactly how many percent sure they can tell you, 0.05 percent or less chance of error that this was a real difference between the study arm and the standard of care arm. 

Sujata Dutta:

I think you mentioned too that one is trust, and one is data. So, Dr. Pollack mentioned a lot about the data, I think the trust is also a very important thing. I like to go with positive intent because I do not have a reason to believe my doctor has some ulterior motive to suggest a clinical trial. And so, I trust them wholeheartedly. The first hurdle is you have to trust the system or what is being proposed to you because, as Dr. Pollack said, it’s gone through a lot of vetting. A recommendation to be part of a trial itself is vetted by your doctor when they make the recommendation. So, have faith, trust, that they are making a good recommendation. And then, of course, the data, I don’t know much about that, but as I said, I trust it. So, I would trust the data too. 

Katherine Banwell:

Of course. Of course. Some patients feel like they’re going to lose their privacy. Sujata, did you feel that at all? 

Sujata Dutta:

No. Not at all. 

I mean, with everything else that is also taken care of, my information, or whatever, is not made available to anybody. And so, obviously there’s a lot of people will get those, and I had a huge pile of paperwork to go through, but I think that’s a good thing. For my peace of mind that I knew that my information was not going to be shared outside of the study, the trial, etc., and things. So, no, I don’t think that’s a problem. 

Katherine Banwell:

Beyond these misconceptions is there anything else you hear? Dr. Pollack?  

Dr. Seth Pollack:

No. I mean, look, in our crazy modern world there’s concerns everywhere, but the clinical trial is very, very careful. Whenever possible we use the medical chart.  

And then, we have a very stringently protected database that’s storing people’s information, but it’s deidentified. So, I mean, we have a separate key to figure out who the patients are and then we try to limit the use of the patient’s name or any identifying information about them beyond that. So, and your information is not shared. For example, if there’s a drug company involved in the trial, your information is not shared with the drug company, you have a new identifier that is unique and not traceable back to you that is provided to whoever, if there’s outside groups working on the trial with you. So, your information is very carefully protected, and everyone is very conscious about issues regarding privacy.  

Katherine Banwell:

That’s great to know.  

Are Clinical Trials a Logistical Nightmare?

Are Clinical Trials a Logistical Nightmare?  from Patient Empowerment Network on Vimeo.

PEN board member and myeloma survivor Sujata Dutta shares how her family managed the logistics of her clinical trial participation.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

Are Clinical Trials Safe?


Transcript:

Katherine Banwell:    

The logistics will be a nightmare and I don’t live close to a research hospital. Sujata, did you have that issue?

Sujata Dutta:  

Yeah. That’s a very interesting one, and actually I’ll share my experience. I did have this concern about logistics, because I got my transplant at Mayo Rochester, which is a two-hour drive from where I live. And so, when I got to know about it literally me and my husband were like, “Oh, my gosh. What are we going to do?” It’s not just me, my husband is my caregiver, he has to take the day off to drive me to Mayo, wait through my treatment, and drive me back. Then we have boys who were distance learning at the time, and so what do we do with them? Do we drop off a friends or take a favor from a friend? And so on and so forth.

So, the logistics was an issue and we literally said, “Thanks but no thanks” and we walked out of the room. And we came downstairs, and my husband was like, “What the heck?” My team understands everything, and I fortunately work for a very good employer, and they understand everything, people first. And so, he was like, “I can figure this out. Let’s do it if this is what’s going to help you, then let’s just figure this out.” And at that time, it was so good, and I have total respect for Dr. Pollack.

You and everybody in this medical community. My doctor who leads the trial at Mayo, she actually said, “Why don’t you check with your local cancer center? Maybe they are also approved by FDA, and they may be able to administer this treatment to you.” Unfortunately, at that time they weren’t but we were like, “We’re going to go ahead with the trial. It doesn’t matter.” My husband was like, “I’ll take the day off, you don’t worry about it.” And then, four months later my institute did get approved by FDA, and so I was able to transfer from Mayo to my local cancer center, Abramson Cancer Center, which is 20 minutes from home. And so, there are options, I know that it can be an issue and it can be overwhelming at the time which was the case with me. But I was able to overcome that, so maybe there are options available that the patients can consider.