Tag Archive for: cancer screening

Survivorship Care: Screening and Lifestyle Strategies to Reduce the Risk of Secondary Cancers

What are key lifestyle changes for cancer patients navigating treatment and recovery? Expert Dr. Amy Comander from Massachusetts General Hospital discusses survivorship care and lifestyle advice for coping with and recovering from cancer treatment.

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Equity in Cancer Care: Accessing Lifestyle Medicine for All

Equity in Cancer Care: Accessing Lifestyle Medicine for All 

Transcript:

Lisa Hatfield:

Navigating cancer treatment and recovery is a journey that involves more than just medical care. Lifestyle choices play a crucial role too. What other factors play into this journey? I’m getting to the bottom of it with a respected oncologist in this Patient Empowerment Network RESTORE program. 

Dr. Comander, many patients often worry about secondary cancers. What are key lifestyle changes you recommend for cancer prevention and how do they differ from those recommended for post-cure recovery or post-treatment?

Dr. Amy Comander:

So an important component of survivorship care, which is care of the patient, certainly at the time of diagnosis and beyond, but in that follow-up phase as well, is screening for secondary cancers. And what does that mean? That means that a cancer that can develop after the diagnosis of the primary cancer. And I know to some listening that sounds really overwhelming. “You mean I can get another cancer?” But unfortunately, none of us have a crystal ball and that could happen. So what are strategies we can use to help reduce the risk of someone getting another cancer down the road?

And I first want to emphasize the importance of cancer screening. So we now have all these great tools for cancer screening; mammograms, breast MRIs, colonoscopy, pap smears, pelvic exams, CT scans for detection of lung cancer, and now we’re having these blood tests that we’re going to learn more about in the next few years. So there’s many screening strategies that are super important. So I encourage my patients to talk to their doctor. About making sure they’re staying on top of that because, my patients who I see in breast cancer follow-up, I always ask them, “When was your last colonoscopy?” And nobody loves getting that, but it’s really important as our major strategy for screening for colon cancer.

In terms of lifestyle recommendations, we know that a lot of the lifestyle recommendations that we talk about with our patients to improve their health during the survivorship phase of their care are also associated with a reduced risk of getting another type of cancer. So we know that physical activity is very beneficial to reduce the risk of many cancers, including breast cancer, colon cancer, and others. We know that being at a healthy body weight is really important in terms of thinking about risk for a future cancer. Again, a healthy diet with a focus of lots of whole grains, fruits, and vegetables is also so important.

So I think all the lifestyle strategies that we’ve really emphasized for cancer survivorship are also really important to optimize health, to reduce the risk of a secondary cancer and other chronic diseases, which I do have to mention, such as heart disease, stroke, type 2 diabetes. All of these things can happen too, because they can happen to all of us here. So we need to think about how can we optimize our health to reduce the risk of all of these potential conditions.

Lisa Hatfield:

Thank you. You heard it here from Dr. Amy Comander. Thanks for joining this RESTORE Program. I’m your host, Lisa Hatfield.

How to Create a Cancer Survivorship Care Plan

 

What is a cancer survivorship care plan? This animated explainer video provides an overview of the key components of a survivorship care plan, advice for collaborating with your healthcare team when preparing for life beyond cancer, and the overall benefits of planning for survivorship.

 

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What Does Cancer Survivorship Mean?

What Does Cancer Survivorship Mean?


Transcript:

Whether you’ve just finished treatment or are years out from your diagnosis, a Cancer Survivorship Care Plan can help you, your loved ones, and your healthcare team manage your overall health. 

So, what exactly is a Survivorship Care Plan? This plan is your roadmap for the next phase of your cancer journey. It includes information about your diagnosis, prior treatments, follow-up care, and it helps you and your healthcare team monitor your long-term health. 

So, what should your Survivorship Care Plan include? Here are the key components: 

  • It starts with a treatment summary, which lists the types of therapy you received, the dates of treatment, and any complications that arose. This information allows your future healthcare providers to better understand your medical history. 
  • The plan also includes a follow-up care schedule that details regular check-ups, screenings, and tests. These appointments monitor for cancer recurrence and ensure any side effects are managed effectively. 
  • Potential long-term side effects of your treatment are also noted in a survivorship care plan. Having this information can allow you to be more aware, so you can communicate any physical changes with your team.  
  • Tips and guidelines for maintaining a healthy lifestyle are also added to the plan and may include advice on diet, exercise, and mental health support, which can all support your quality of life as a survivor. 
  • Another key component is contact information for your healthcare providers, including your oncologist, primary care physician, and any specialists you see regularly. This makes it easy to reach out when you need assistance or have questions. 

Creating a Survivorship Care Plan is a collaborative effort. Schedule a meeting with your oncologist and primary care physician to develop your plan. Here are some questions to guide your discussion: 

  • What specific follow-up tests do I need? 
  • How often should I see my healthcare team? 
  • What symptoms should I watch for that might indicate a recurrence or new cancer? 
  • What steps can I take to manage any long-term side effects? 
  • Are there specific lifestyle changes I should make to improve my health? 

Once your plan is in place, it’s time to take action. Follow your healthcare team’s recommendations and attend all appointments. So, what other steps can you take to stay proactive in your survivorship? 

  • Regularly update your plan and review it with your doctor or care team. 
  • Set health goals with your healthcare team and plan for potential challenges. 
  • You should also seek counseling to address your emotional and mental health when necessary. Keeping a journal may be helpful too. 
  • And, seek out support and resources from advocacy organizations like the Patient Empowerment Network and Cancer Support Community. 
  • It’s also a good idea to consider financial and legal aspects: Understand insurance, explore financial aid, and prepare legal documents as appropriate. 
  • Maintain a healthy diet, engage in regular physical activity and incorporate enjoyable exercises into your daily routine. 
  • Take good care of yourself – Lean on friends, family, and support groups for emotional and practical support. 

Remember, you are not alone on this journey. By creating and following a Survivorship Care Plan, you’re taking an important step toward living well after cancer. To learn more about cancer survivorship and access support resources, visit powerfulpatients.org.  

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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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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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.

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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.

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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.  

Cancer Survivorship | An Expert and a Survivor Share Inspiration and Advice

Cancer Survivorship | An Expert and a Survivor Share Inspiration and Advice from Patient Empowerment Network on Vimeo.

How is survivorship defined, and what can one expect after cancer treatment is complete? Dr. Kathleen Ashton, a clinical health psychologist, shares key advice about what to expect in follow-up care and the importance of planning for the future. Dr. Ashton is joined by Erica Watson, a breast cancer survivor, who provides her personal perspective on navigating life with cancer, discusses the impact of peer support, and shares why she’s passionate about patient advocacy.
 
Dr. Kathleen Ashton is a board-certified clinical health psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton.
 
Erica Watson is a breast cancer survivor and patient advocate.
 

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Transcript:

Katherine Banwell:

Welcome and thank you for joining us. With us today is Dr. Kathleen Ashton. Dr. Ashton, welcome. Would you please introduce yourself?  

Dr. Ashton:

I’m Kathleen Ashton. I’m a board-certified clinical health psychologist, and I specialize in working with patients with breast cancer and those with hereditary risk for breast cancer.   

Katherine Banwell:

Erica, would you introduce yourself?  

Erica Watson:

Sure. I am Erica Watson, wife, mother, grandmother, neighbor, friend, employee, sister, aunt, all those in addition to a, I’m going to say six-month breast cancer survivor.  

Katherine Banwell:

Congratulations. 

Erica Watson:

So, thank you.  

Katherine Banwell:

Well, welcome to both of you. We really appreciate you taking the time to join us. Erica, I’d like to start with you. When were you diagnosed with breast cancer?  

Erica Watson:

So, I got the official I have cancer, or you have cancer call on the 28th of February 2023. So, a little over a year ago.  

Katherine Banwell:

And how did you work with your team to decide on a treatment plan once you were diagnosed?  

Erica Watson:

Initially I went into my first appointment just automatically knowing that I was going to have a double mastectomy, because I just could not imagine having to go through any part of this process ever again. But then I settled, I listened to my medical team, we settled on doing chemotherapy first and then I made the decision on what type of surgery to have about a month-and-a-half to two months later.  

They allowed me to make the decision. And so, I didn’t feel any pressure or anything like that from them. So, it was really me listening to my medical team.  

Katherine Banwell:

Okay. And how are you feeling today?  

Erica Watson:

I’m good. I had my three-month appointment with my oncologist yesterday. I got a gold star on my blood work, it’s looking great. I’m good, I’m good.  

Katherine Banwell:

That’s such great news.  

Erica Watson:

Thank you. 

Katherine Banwell:

Dr. Ashton, I’d like to start with a definition. If you would tell us what the difference is and the importance of survivor versus survivorship?  

Erica Watson:

Sure. So, people define being a breast cancer survivor at different points along the way, and even different oncologists really think about it, dating it from different times. So, some people date it from when they were diagnosed. Other people will date survivorship from after they had their surgery or after they completed chemotherapy.  

So, everyone looks at it a little bit differently. But survivorship is really more of that process throughout someone’s life after breast cancer; taking care of surveillance, working with their doctors, ongoing lifestyle changes that they may be undergoing after breast cancer.  

Katherine Banwell:

And, Erica, what does survivorship mean to you?  

Erica Watson:

I am just living with a purpose now, I guess. I have not defined where my survivorship term starts or ends or starts actually. So, I’m intentional about laughing more and doing things that bring me joy and sharing my story.  

I try not to pay attention to the small things in life that used to get me all stressed out. I talk to my medical team, I ask questions, I dance in the mirror when I hear good music. I mean, I’m just trying to get the most out of life that I can at this point. And I wake up every day with gratitude, and I just go.  

Katherine Banwell:

Yeah. Do you feel like you’ve had to adjust to a new normal?  

Erica Watson:

Oh my gosh, yes. I tend to, I guess I’ll say question things a little bit more than I did in the past, and specifically as far as my medical team; I’ll ask if I can do a thing or another with traveling, whether or not I can exercise or sit in the sun.  

I have to pay more attention to my body. I have to pay more attention to the things that I eat, those kinds of things. Which I really didn’t pay too much attention to in the beginning, but breast cancer is a part of my life and will be a part of my life. It does not define my life, but it is a part of it, and I have to pay attention to that.  

Katherine Banwell:

Dr. Ashton, the next question goes to you. We often hear about the importance of creating a survivorship care plan. What is that exactly, and where do you and a patient start when you’re creating such a plan?  

Dr. Ashton:

That survivorship care plan is such an important part of the process. I think for many patients it really helps relieve a lot of anxiety. When you’re finished with your active treatment, there’s really a thought of what next, right?  

You’ve just gone through surgery or chemotherapy, radiation; you’ve been actively treating the cancer, and then you’re kind of left like, what is this new normal? So, one of the things we do at the Cleveland Clinic is patients have a survivorship visit.

So, it’s either with their oncologist or with a nurse practitioner, and they spend an hour with the patient and go through what are all the treatments you’ve done? What’s your plan for the next five years? How often do you come in to see your doctor? What kinds of tests are you going to get, what kind of scans? What you need to be looking for? What would be a sign of something to be concerned about? And then a big part of that plan is also the lifestyle changes that occur in survivorship. So, eating a healthy diet, exercising regularly, stress management, getting enough sleep. And that’s where as a psychologist a lot of times I come in.  

We have a group called Breast Cancer STAR (Survivorship Tools and Resources), so it’s a five-week program for our survivors to work on changes with lifestyle, stress management, all of those changes in their life moving forward.  

And that’s a virtual group program where survivors can talk to each other about that survivorship plan as well as learn some skills to take with them.  

Katherine Banwell:

It’s great to have that support. We know that this varies by cancer, but what is the typical follow-up that occurs when monitoring for recurrence?  

Dr. Ashton:

So, I usually would probably leave that question to the oncologist, and so many different kinds of breast cancer are going to have different kinds of monitoring. But very often that first year patients will check in with their oncologist every three months. They’ll have a breast exam at many of those visits. If they still have breast tissue, then they would have mammograms or possibly MRI’s. So, there’s some scans that go along with that. And many patients are also on ongoing medications or treatments that go for sometimes several years after their initial breast cancer diagnosis.  

So, they would be checking in with their oncologist on those medications at each visit as well.  

Katherine Banwell:

Erica, the follow-up care that goes along with being a survivor can be anxiety-inducing, or cause some call it scan-anxiety. What advice do you have for coping with these types of emotions as a survivor?  

Erica Watson:

As a survivor I will have my first scan next month, but I would just encourage survivors to just be okay with the process, ask questions, as many questions as they possibly can, take someone with them, which was suggested to me.  

I don’t have anxiety necessarily about the scans. My breast cancer was detected by pain or through pain, so I experienced anxiety with that, any kind of breast pain that I experienced from surgery or radiation therapy. And I also would just advise the patient or survivor to just experience the process, allow themselves to be afraid, talk through the reality of what’s really going on, talk through the fact that they had all the treatments, they did everything that was in their control as far as going to the appointments, getting all the care, to stop the reoccurrence.  

Katherine Banwell:

Right. Dr. Ashton, what can you tell us about the importance of peer-to-peer support in cancer care and survivorship?  

Dr. Ashton:

I think peer-to-peer support is so important for survivors.  

It really gives survivors the chance to talk with other people who really understand what it’s like going through this process. So, as a professional, I can tell patients the science and give them tools and what works, and their oncologists can tell them what’s important for them to do, but the lived experience is so important. So, in our group program they get some of that peer-to-peer support. And when Erica says, “Hey, it really helped me to bring someone with me to my scan,” a patient really hears that in a different way than when your professional tells them.  

So, it’s just that much more meaningful. There’s another program at the Cleveland Clinic called Fourth Angel, and it’s a national program that any patient can take advantage of, and it matches you with a peer mentor.  

And they often check in by phone with each other, someone who’s been through a very similar experience, and patients often find that incredibly helpful. And many patients that move into survivorship, then they become a mentor, and they’re able to help another patient.  

And that really feels good to be able to give back in that way.  

Katherine Banwell:

Yeah, that’s wonderful. Erica, you have a family history of breast cancer, so you’ve been really vigilant in your care over the years. What advice do you have for other patients and family members facing a cancer diagnosis? Where do you find your strength?  

Erica Watson:

Well, I got it from a handful of sources. I learned a lot on my faith. I talked to my family members who were diagnosed with breast cancer and that are currently living. I was not afraid to ask questions. I cried a lot. I just really leaned heavily on my medical team.  

I feel like it is so important as Dr. Ashton was saying to be able to reach out or connect with someone that has actually lived the experience, because I was one of those women. I heard it from the medical team, but they were leaning on science, and I needed someone that actually went through what I was going through. That allowed me to understand and to trust what they were telling me. Not that I didn’t trust my medical team, but the family members or anyone else that I leaned on to support actually lived the life that I was getting ready to live, experienced what I was getting ready to experience. So, that really helped me a lot.  

Katherine Banwell:

Yeah. As you navigated care, were there any obstacles or hurdles that you faced?  

Erica Watson:

Well, the main one that sticks out to me today was as an African American woman, I didn’t feel as if I had a lot of resources that were catered to me and my needs. And so, that kind of stifled my search for research or for resources, because I didn’t have an experience with women that looked like me, that talked like me, that lived like me, that would have experienced the hair loss like I experienced, my skin changes with the sun.  

So, those were the obstacles that I faced, and it was tough. Of course, I had my family to lean on, I have my aunt, my sister, but there are so many women out there that don’t have family members that have gone through breast cancer, and I feel so like it’s necessary for us to be able to see and to experience the diversity in that area. 

We make up a huge demographic, but we are just not represented the way that I feel like we should.  

Katherine Banwell:

Yeah, I absolutely agree. And I know that the medical community is trying to reverse this issue; they’re trying to make it easier and more supportive for people of all colors and races. Why do you think it’s important for survivors to actually be an advocate and help other people as they navigate cancer?  

Erica Watson:

I believe the most important reason is just so that they know that they’re not alone. We can, as a breast cancer survivor, I know it was – my first response was to just go into a shell and hide.  

I didn’t want to share it with anyone. Of course, my family did not, they would not have understood, and this was before reaching out to my sister and my aunt. But yeah, just so that we’re not alone, to know that there are other women out there that are experiencing and feeling the exact same thing that we are experiencing and feeling; the questions, the concern, the guilt, the fear, we just need to be able to know and connect in that way. So, I just – yeah, I’m so passionate about that, and that’s it.  

Katherine Banwell:

Yeah. It’s so helpful to know you’re not alone in how you’re feeling, in some of the symptoms you’re having, to know that other people have experienced the same thing is vital.  

Dr. Ashton, primary and preventative care continues to be essential regardless of someone’s diagnosis. What tips do you have for keeping up with overall health and well-being?  

Dr. Ashton:

Yeah, I think as women we often put ourselves last in the priority list. And for breast cancer survivors, well-being is incredibly important. And I tell patients it’s not an optional thing or something that you’re being selfish by doing, it’s actually part of your prescription as a survivor. So, the time that you take for stress management, whether it’s meditation or being outdoors or whatever brings you joy, is really part of your prescription for wellness in survivorship. Exercise is incredibly important. They recommend for survivors 150 minutes of exercise a week and two days of weight training, keeping your weight normal.  

So, all of the healthy eating, healthy habits are actually what’s going to help prevent recurrence. And they’re things that are in patients’ control, so that feels good too to be able to take that time and recognize that it’s an essential part of their health, not an optional part.  

Katherine Banwell:

Erica, what advice would you give to someone who is newly diagnosed with cancer?  

Erica Watson:

I would tell them to process, take some time, slow down, trust family members and friends, listen to their medical team, know and realize that they are not alone, seek resources, and just to know that it’s not their fault, because I dealt with a little, a smidgen of that in the very beginning of my diagnosis. And to understand that there is, that today’s breast cancer is not yesterday’s breast cancer; it looks different, it feels different, and that they can do it.  

That is something that is vital. I believe that we – I know when I was first diagnosed, I remember looking in the pamphlets and hearing stories, and I just knew that there was no way that I was going to make it. I couldn’t do the sickness, I didn’t want to deal with the hair loss, all the things; I didn’t want to do with the pain, all the things that came along with a breast cancer diagnosis and treatment from chemotherapy, radiation, or surgery, but it’s not like that today. And so, I just would encourage the survivor or the patient to just be aware, do research, but don’t Google as much research, because it’s not a lot of good information on Google; it will definitely scare you.  

Katherine Banwell:

No, that can be dangerous.  

Erica Watson:

Yes, it will, it will scare you. But most of all, lean on family members and friends, ask for help, which is something that I did not do initially, because I am a woman and I can do it all on my own, and that didn’t work out well for me in the beginning. But just seek guidance, just reach out to someone that they know, advocate, any kind of mental health resources that are offered through the hospital or even in the community through nonprofit organizations, to do all those things. And Dr. Ashton has really encouraged me and pushed me to think of myself, to put myself first and understand that breast cancer or cancer in itself is a disease.  

It’s sickness, it needs to be treated properly, and that’s what I would give them.  

Katherine Banwell:

Yeah. I want to thank both of you so much for joining us. And do you have anything else to add?  

Erica Watson:

Well, I’m very excited to hear Erica’s point of view as she goes through this process, and excited for her to share her experience as an African American woman. I think absolutely as healthcare providers in the system we need to do better, and I know her reaching out in this way is going to make a difference for someone listening to her story who is thinking about getting a mammogram or is starting to go through treatment. So, I just appreciate her today.  

Katherine Banwell:

Yeah. Erica, do you have anything to add?  

Erica Watson:

I just want to thank Dr. Ashton. I want to thank you. I just want to thank – I’m grateful and honored for the opportunity to be able to share my story. I am a true believer, and if it helps one person then that’s mission accomplished.  

And I believe in locking arms and let’s just, accomplishing the goal and fighting this fight together.  

Katherine Banwell:

That’s a great way to end the interview. Thank you both again so much, it’s been a pleasure.  

Erica Watson:

Thank you.  

Dr. Ashton:

Thank you.

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.

See More from Clinical Trials 101

Related Resources:

A Patient Shares Her Clinical Trial Experience

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

Are Clinical Trials a Logistical Nightmare?


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.