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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.

Recovering From CAR T-Cell Therapy | What Can Myeloma Patients Expect?

Recovering From CAR T-Cell Therapy | What Can Myeloma Patients Expect? from Patient Empowerment Network on Vimeo.

What can myeloma patients expect after undergoing CAR T-cell therapy? Myeloma expert and researcher Dr. Beth Faiman discusses returning to life after the CAR T process, advice for physical activity, and immune system concerns during recovery.

Dr. Beth Faiman is an Adult Nurse Practitioner in the department of Hematologic Oncology and Blood Disorders at the Cleveland Clinic. Learn more about Dr. Faiman.

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Transcript:

Katherine Banwell:

Beyond monitoring of any issues, what can someone expect related to returning to life as they knew it before the diagnosis? Is there a timeline for resuming lifestyle and activity?   

Dr. Beth Faiman:

Yeah. So, I should say I because it’s from my perspective. I am a real strong advocate. I tell people to do what you feel like you can physically do. We know that myeloma can affect the bones and put your bones at risk for breaking and so we give you medicines to protect it. So, I do put some restrictions however on physical activity in terms of, “I don’t want you to bench press 40 pounds or 20 pounds,” in most cases. And depending on what the bones look like on x-ray, I’ll even restrict it to about five to 10 pounds.  

If you think about it, that’s a bag of potatoes. So, you don’t want to put too many restrictions on for everybody. But talk to your healthcare provider about what your specific restrictions are with physical activity. Because I don’t really put any restrictions on but I encourage things like riding a bike, especially a stationary bike in your own home, so that if you fall off – hopefully, you won’t fall off a stationary bike. But if you injure yourself, then you’re able to be in a place that somebody can help you.   

But riding a bike. Also, exercising in water. Water therapy is a great weight bearing exercise and there are times of day where you can go when the YMCAs or YWCAs aren’t as busy – or community centers. So, you’re less at risk for bacterial or other illnesses. But during that first month, I try to limit their exposure to people because you’re at risk for the different viruses that are all over the place, the bacterial infections.  

So, that first month is the critical period where I try to say, “Okay, try to lay low. Let’s get you through this period. Your immune system will start getting stronger on its own after this period.” And then, that month two you start feeling like doing more. You go to the grocery store. You maybe go to eat out at a restaurant but pick a time of day that’s less busy. So, go for an early dinner. There’s no shame in eating at 5:00 p.m. if you want to go out. And then, get a table in the corner with your own wipes. And so, that’s where your immune system is getting stronger. 

And then, by month three, I think most people will feel much, much better and much, much stronger. And if you can keep moving throughout this whole time, then you’ll be stronger on the way out.  

Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Navigating Anxiety and Stress Following Follicular Lymphoma Treatment from Patient Empowerment Network on Vimeo.

What are some ways for follicular lymphoma patients to cope with emotions after treatment? Cancer patient Lisa Hatfied shares coping methods and health lifestyle advice for dealing with stress and anxiety.

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Transcript:

Lisa Hatfield:

After you are done with your follicular lymphoma treatment (including stopping any maintenance therapy), you may feel anxiety or stress and ask yourself “Well now what?” This range of emotions is normal. One woman  shared, “After a year in remission, dealing with the aftermath of follicular lymphoma has been tough. Initially, the news of remission brought euphoria and excitement that lasted the whole day. However, soon after, I found myself feeling numb—and then grappling with guilt for feeling that way.

You may feel similar to this woman or you may feel like the other shoe is about to drop (i.e. concerned about recurrence in the future). Here are some tips to help manage this stress and anxiety: 

  • Manage your expectations. Give yourself a break and set realistic expectations. After you stop maintenance therapy, you may not feel 100% back to normal right away so give yourself grace 
  • Research has shown that fear of recurrence can be reduced when your healthcare team is able to give people statistics about curability or remission length. Ask your healthcare team if you find comfort in statistics. 
  • Talk to a counselor and seek antidepressant or anti-anxiety medications
  • Exercise and relaxation techniques like meditation and mindfulness may also help
  • Continue healthy lifestyle factors, just like you did during treatment, including good diet/nutrition, getting enough sleep, etc. 
  • Join a support group designed to help people who have completed treatment. It can be helpful to hear what other people do to manage their anxiety/stress and know you are not alone in feeling this way. 

Sources: 


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How Can I Manage Anxiety After Follicular Lymphoma Diagnosis?

How Can I Manage Anxiety After Follicular Lymphoma Diagnosis? from Patient Empowerment Network on Vimeo.

How can follicular lymphoma patients manage anxiety after diagnosis? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope discuss the experience of watch and wait and advice for coping with anxiety and being proactive in your care. 

See More from START HERE Follicular Lymphoma

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Transcript:

Dr. Tycel Philllips:

It’s really about some patients are very uncomfortable being watched with an active cancer. And so, in that situation, that’s probably the biggest discrepancy we have nowadays. Because of the anxiety of the watch and wait approach. Some patients would like treatment right away, irrespective of whether they need it or not. So, you’ll sometimes get discrepancies with our patients about that.

Lisa Hatfield:

The clip you just heard was Dr. Tycel Phillips from the University of Michigan Rogel Cancer Center, who explained  how if follicular lymphoma patients are feeling anxious about being in the watch and wait period (aka not starting treatment), they may go seek a second opinion, which is perfectly fine and even encouraged by physicians.

However, even during the watch and wait period,  there are still things you can do to improve your health and well-being. Taking control of what you can control may help you feel less anxious. Here are some tips: 

  • Learn as much as you can about your diagnosis. Know the signs or symptoms that may mean it’s time to start treatment and stay up to date about the latest treatment advancements.
  • Establish a relationship with a hematologist-oncologist specializing in your diagnosis. Proactively becoming a patient under their care ensures that, if treatment becomes necessary, you’ll already have a healthcare professional familiar with your case andis  updated on the newest available treatments. This specialist does not need to be the same doctor overseeing you in watch and watch.
  • Attend all doctor appointments, even if you are feeling well. Some patients may stay stable for years before symptoms or disease progression makes treatment necessary. If you notice changes at any time, don’t wait to reach out to your healthcare team.
  • Maintain health insurance coverage, if at all possible. If you do need to begin treatment, you will need health insurance to help cover the cost. Even during watch and wait, regular appointments and testing can add up without health insurance coverage.
  • Improve your overall well-being with nutrition, exercise, and other good health practices, such as not smoking and moderating your alcohol intake. This approach positions you to tolerate treatment more effectively when the time comes, minimizing the risk of serious treatment complications.
  • Prioritize your mental health. Consider joining a support group or talk with a fellow watch and wait patient to help you work through your feelings and answer questions. If feelings of anxiety or depression begin to interfere with your daily activities, ask your healthcare team for a referral to a mental health professional.

These tips can be useful to you during the watch and wait period as they allow you to keep moving forward and be proactive!

Sources:


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Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Isaac Powell: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

What are some ways that cancer patients can be empowered by healthcare providers? Expert Dr. Isaac Powell from Karmanos Cancer Institute shares his perspective on ways patients can take charge of their health and situations that may be outside their control.

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Transcript:

Dr. Isaac Powell:

I tell my patients that they have to take charge of their health. They have to talk to the doctor. You have to ask the doctor challenging questions. Then you have to do things that are going to help you as well. You have to be responsible for your own health, such as losing weight if necessary, such as exercising if necessary.

There are things that can cause things that you can’t control, like the pollution of the air and the water. But even in those situations, you need to challenge that and say, we need to do something about this polluted area where I’m living. And so those are the kinds of things that I discuss with my patients. Take charge of your health in every aspect.

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome? from Patient Empowerment Network on Vimeo.

How can barriers to advanced prostate cancer care be overcome? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses medical mistrust in the African American community and advice he gives to patients about prostate cancer screening and prevention.

See More from [ACT]IVATED Prostate Cancer

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Transcript:

Lisa Hatfield:

Are there any challenges unique to minority communities that hinder access to advanced prostate cancer treatments and therapies? And do you have thoughts on how these barriers can be effectively addressed?

Dr. Isaac Powell:

I do. First of all, the diagnosis has to be made. And so that’s made by screening, by the PSA testing and digital rectal exams. Now, some people are talking about, well, we don’t need to do the digital rectal exam. That absolutely is not true. You can have a very aggressive cancer and have a normal PSA. We know that the PSA is not 100 percent accurate in diagnosing, predicting that you may have prostate cancer sometimes.

And I’ve had several patients who had normal PSAs, abnormal rectal exams, and as a result, I’m biased with them. If you don’t do the rectal exam and you have a normal PSA, you may miss aggressive cancers. So definitely have your usual rectal exam, excuse me. And once after that, if you have a biopsy, and if it is positive, then again I think that aggressive therapy is the way to go, if you’re in good shape.

Now, people are afraid of cancer. I mean, afraid of surgery. I’ve had surgery, so I can talk to them about what I’ve had and what you go through. Men are also concerned about losing their sexual function and those kinds of things related to the treatment of prostate cancer. And I can tell them that the quality of life is okay after that because we have ways of treating sexual dysfunction, the pill that everybody knows about, as well as injection and penis and ultimately the penile prosthesis. So that can be fixed.

And the other issue of losing control of the urine, that can be fixed as well. And so those are the things I tell people about not specifically among African Americans. There’s the genetic and the biology that I have to discuss, but one of the things that drives these genetic cells is obesity.

Obesity can produce these pro-inflammatory cytokines. So I always advise them to, if they are obese, to reduce their weight and their fat, particularly belly fat. That’s challenging because people have difficulty losing weight. The other thing is exercise. Exercise is a key that I think it is the most important factor in treating many health conditions, exercise. And what exercise does, and this has been studied in breast cancer, it decreases the expression of the genes that I described earlier. In terms of prior driving the cancer and breast cancer, they’ve found it decreases the pro-inflammatory cytokines. I described the tumor necrosis factors IL-6 and IL-8. So that’s important, exercise. So those are the things that I tell patients. And now in terms of advanced disease there are clinical trials that are there.

And we do these trials to decide what’s the best treatment for cancer, even though we don’t have “a cure.” Now, the problem among African Americans is that they don’t trust these clinical trials because of the abuse that African Americans have suffered through slavery and all the other kinds of things when they’ve been treated as less than human, like animals being operated on without having any anesthesia and many other abuses that have occurred. And so there’s this major distrust now that’s very difficult to eliminate in the Black community, especially if there are very few African American doctors to take care of them. So what I think that we have to fix that question of distrust, and that’s going to take a while, but I talk to them always about this mistrust issue, because I can’t see everybody, although we do need more African American doctors and nurses to take care of them and to encourage them to participate in clinical trials and to be seen as a person who is going to be taking care of them in clinical trials, that’s very important.

Often we talk about access to care, but particularly African Americans that mostly live in large cities where there is access to care. But, in terms of one particular example that’s brought up on occasion is what has occurred in Baltimore and other big cities where I talk to an African American, you know Johns Hopkins is right in the middle of the African American community. So it’s not about access again, it’s about mistrust. And I said, “Well, why don’t African Americans go to Johns Hopkins?” Well, she says, “If you walk past Johns Hopkins, they may steal your bodies.” I said, what? I didn’t believe that, but I’ve been reading literature, particularly one called the Medical Apartheid where they talked about African slavery, where they dug up the bodies of slaves to practice the anatomy.

And so that’s where this idea occurred. At night, they would dig up the bodies and do this, and not only in Baltimore, but other cities as well. So again, the mistrust issue is very difficult to resolve because of those issues. And people talk about that, well, I just don’t trust the white healthcare system, period. And don’t want to go until they’re having symptoms, and then they have no choice. They have to go. And by this time, the cancers are more advanced and cannot even prolong life expectancy in those particular patients. So I’m not sure I answered your question in terms of what a person or what I would do to activate participation in the healthcare of advanced disease.

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What Impact Does Advanced Prostate Cancer Have on Lifestyle?

What Impact Does Advanced Prostate Cancer Have on Lifestyle? from Patient Empowerment Network on Vimeo.

What should advanced prostate cancer patients expect for treatment impact? Expert Dr. Yaw Nyame with the University of Washington explains common treatment side effects, advice for easing physical side effects, and ways for patients and care partners to find support.

See More from [ACT]IVATED Prostate Cancer

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Prostate Cancer Clinical Trials _ Is Mistrust a Barrier

Prostate Cancer Clinical Trials | Is Mistrust a Barrier

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Transcript:

Lisa Hatfield:

There is often a tendency to associate advanced prostate cancer with a risk to relationship intimacy. And can you speak to sexual dysfunction and other lifestyle concerns when it comes to prostate cancer and that diagnosis?

Dr. Yaw Nyame:

So, prostate cancer, it’s important to remember that the prostate itself is a sex organ for men, right? Its primary purpose is to produce seminal fluid, the fluid that comes out with ejaculation. And it’s closely linked to a whole lot of structures in your pelvis that support, you know, erectile function and sexual function. All of our treatments have the very real potential to impact sexuality and sexual function. And, I think part of what’s important to do is you go into these and to your conversation with your doctors is to understand how your sexual function, your urinary function, and sometimes your bowel function are going to be impacted by these treatments.

And to get some real clarity about what life will look like for you post-treatment and the setting of advanced cancer, there’s also the added potential of impact to sexual function from the hormone suppression. When we take away your testosterone, oftentimes we take away things like libido or your sexual desire, and we can impact erectile function as well.

You know, things that can help overcome some of the side effects of that hormone suppression are definitely diet and exercise, being active, keeping your muscle mass up, having good dietary habits seem to help. We have a lot of mixed reviews and the literature about the benefit, but I, yeah, I’m a strong believer that the healthier you can be as you undergo these treatments, the better you’re going to do overall. My activation tip when it comes to these new diagnoses is to really invest in advocacy organizations that exist in your community so that you can be connected to other men who are undergoing treatment to have candid conversations about life as a prostate cancer survivor. Organizations like ZERO – the End of Prostate Cancer. There are local groups the NASPCC, there are just chapters and groups of men all across the country that gather to talk about their journey.

And I think that that can be a really wonderful network to better understand what treatment realities may look like for you, but also to support the emotional and physical toll that treatment may take on you. And I think that, that being part of those networks actually will also arm you and empower you to have really good conversations with your doctors to understand what resources are available to support you in your survivorship.

What a lot of men and individuals of prostate cancer aren’t told is that there are some solutions for some of these problems may not be like it was before, but there are many treatments that can exist and do exist that can help preserve certain portions of this quality of life, these quality of life components. And if you don’t know about them, you can’t ask about them. And if you’re not willing to confront them, you may not ask about them and suffer unnecessarily.

My activation tip for care partners related to this question would be, have the tough conversation. Talk about having the tough conversation, schedule a time to try and do it. Don’t do the tough conversation when the football game is on, on Sunday evening. Don’t have it on Wednesday night when the baseball playoffs are going on, but have that conversation so that the care partner can help advocate for the patient about those things that the patient may feel uncomfortable talking about. But if we don’t talk about it, we can’t work on it. And if we don’t work on it, we can’t fix it. So it is important to have the tough conversation.

Lisa Hatfield:

Right, thank you both Dr. Nyame and Sherea, who is a care partner. Thank you for that. Those activation tips.

[ACT]IVATED Prostate Cancer Post-Program Survey

Can Lifestyle or Supplements Impact CLL Treatment Response?

Can Lifestyle or Supplements Impact CLL Treatment Response? from Patient Empowerment Network on Vimeo.

Can chronic lymphocytic leukemia (CLL) patients use supplements or lifestyle changes to impact treatment response? Expert Dr. Danielle Brander shares her perspective and information from other cancer studies.

Dr. Danielle Brander is an Assistant Professor in the Division of Hematologic Malignancies & Cellular Therapy at Duke University Medical Center. Learn more about Dr. Danielle Brander.

Download Resource Guide   |  Descargar Guía en Español

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Empowering CLL Patients for Treatment and Survivorship


Transcript:

Lisa Hatfield:

So we have another patient who is concerned about chances of relapse and is asking if there are any lifestyle changes through diet and supplements or anything that you can speak to that may enhance their response or their duration response to the treatment?

Dr. Danielle Brander:

Yeah. So a very very great question to bring about. And this is the one area, understandably where many of us feel frustrated because we can’t tell patients specifically that this trial has been done and says this specific diet is helpful or this specific lifestyle change is helpful to make the treatment work for longer. I think some of that is because some of the general advice we give meaning maintaining daily activity or a well-balanced diet sound non-specific or simple, but I think do help in patients staying in an overall general health wellness so that they can benefit from the treatment and potentially have less side effects from the therapy. 

But getting back to the question we just talked about, I think certainly trials or studies really need to be continuing to look at this, because I think there likely are things that we can be more specific to patients about. There are studies looking at physical fitness and exercise regimens not necessarily specific to CLL, although there are studies being done in that space, but to other cancers showing that physical activity and exercise can help even for patients not on treatment maintain control of their cancer. So general daily activity and exercise are important in studies that look at how do you tailor that to an individual I think are important too.


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Expert Advice | Strategies for Managing MPN-Related Fatigue

Expert Advice | Strategies for Managing MPN-Related Fatigue from Patient Empowerment Network on Vimeo.

Fatigue related to myeloproliferative neoplasms (MPNs) can be overwhelming and may have an impact on other parts of your life. So, what can be done about it? MPN specialist Dr. Naveen Pemmaraju shares advice for understanding and managing this common symptom, including lifestyle choices that may be beneficial. 

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju

 

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Understanding and Managing Common MPN Symptoms and Side Effects

Understanding and Managing Common MPN Symptoms and Side Effects


Transcript:

Katherine Banwell:

Well, it’s obvious that there’s some symptom overlap along with this.  And so I’m wondering what the strategies are for managing these. Let’s start with fatigue first.  

Dr. Pemmaraju:

Let’s do that.  

Katherine Banwell:

How do you manage that?  

Dr. Pemmaraju:

This is one of the tougher parts of what we do. I’m glad you’re pinning me down to say it, because really this is the majority of what we need to be talking about in the clinic. I’m going to just be honest, you know, with all the scientific breakthroughs and everything, some of these are limited. The fatigue, this is some of the strategies I use and some of the experts in the field. I think one is managing the underlying disease. So, as you mentioned, if you have high-risk, intermediate to high-risk myelofibrosis, one of the great findings of our field is the JAK inhibitor class generally helps to improve symptom burden.  

So, that is the splenomegaly, the fatigue, the pruritus. Maybe not so much the itching, but some of these other things. So, I think treating the underlying disease, that’s okay. Number two is many clinics, onc centers around the country are starting to open up a supportive care or fatigue center clinic. So, I am referring several of my patients there, we’re talking about diet, nutrition, exercise. We used to never talk about these things. Ruben Mesa has found that doing yoga and meditation can genuinely actually help the pathobiology to reduce the cytokine storm and improve the fatigue and quality of life. 

Dr. Angela Fleischman, our colleague at UC Irvine, has done work suggesting that possibly an antioxidant diet such as the Mediterranean diet can help the overall general fatigue, well-being, wellness. And then of course I mentioned earlier, but I’ll mention here too, sometimes fatigue is outside of the MPN. Have you had your TSH or thyroid checked? What about your vitamin D levels? How are you doing on these PCP general checks? Things that may be contributing to the life and the happiness.

And finally, let me make a plug for mental health. I don’t know how much we were emphasizing before the COVID pandemic, but after, the last three or four years have been tough. Healthcare providers, caregivers, patients themselves, mental health checkup, that can also be contributing to fatigue, not getting out of bed, in addition to the organic medical problems. So, let me advocate a multifactorial approach, scientifically summed up as treating what you can with the underlying MPN, fine, treating the side effects and symptoms of the MPN, as you said. 

And then, other, which can be a huge bucket, particularly as we get older, to not forget about that. Again, checking the thyroid level. And then when you’re on these different treatments, you can personalize it. Interferon, obviously, has its own separate set of side effects and then of course the other agents. So, I think that may be the best way to approach it. Maybe a three-bucket approach. The MPN itself, and then the treatment itself, and then the other, something like that.  

Katherine Banwell:

And as you’ve mentioned, it’s all going to be personalized and individualized.  

Dr. Pemmaraju:

Hugely.   

Katherine Banwell:

Right, because what’s going to work for one person is not necessarily going to work for another.  

Dr. Pemmaraju:

Hear, hear, well said to that. You know, you think you make a great diagnosis in the clinic, someone’s having fatigue, they’re on therapy for your MPN. You check the TSH, it’s wildly abnormal. Okay, you refer them to endocrine. Six months later, the thyroid level is completely normal now on thyroid medicine. And yet, the fatigue, brain fog, everything is still not clear.  

The MPN is under good control. What gives? That’s the difficult part of these diseases. So, I really love what you said about the personalization and to keep looking and keep trying. 

Managing Body Image Concerns During and After Cancer Treatments

Experiencing changes to your body is typical for someone undergoing cancer treatment. Hair loss, surgery scars, weight loss or gain, struggles with movement and balance, sensitive skin, swelling, and changes in sexual drive are some of the most common changes people with cancer encounter in treatment.

We wish these bodily changes were simply a reminder of the strength and courage a person with cancer possesses as they undergo and complete treatment. But unfortunately, going through these changes can fuel body image issues.

Addressing any body image concerns you have is important because having confidence, high self-esteem, and a positive mindset are integral for getting through what is often a grueling treatment process.

The following tips will help you successfully manage your body image concerns and feel confident again as you navigate cancer treatments.

Feel Your Feelings

It’s difficult for many people to acknowledge their feelings and let them run their course, especially when they’re negative. But it’s essential to do so if you want to manage your body image concerns.

Ignoring how you feel and stuffing your emotions down only guarantees they’ll eventually come to the surface, most likely at a time you aren’t expecting them to. Instead, embrace what you’re feeling, whether it’s anger, confusion, or sadness.

When you’re aware of what you’re feeling and what triggers it, you can find more effective ways to cope. Also, when you ride an emotion out, you’ll see that each one does eventually pass. And you become stronger and more emotionally stable because of it.

Engage in Daily Self-Care

As mentioned above, you need a positive self-image to fuel self-worth and be as confident, healthy, and stress-free as possible. All of which help you better cope with what your body goes through during cancer treatments.

Another great way to gain this positive image of your body and self is to engage in daily self-care. Self-care requires you to learn about yourself and embrace your mind and body in every stage. You eventually learn to love yourself unconditionally and provide what you need to feel good about yourself and your life.

Daily self-care looks different for everyone. A patient undergoing cancer treatments will have to be creative in how they approach self-care. The bodily changes touched on above may limit what you can do physically. But don’t let that stop you.

Simple things like taking your medication every day, spending quality time with your family, writing in a journal, or getting the rest you need each night are forms of self-care. Create a routine that’s mindful of your limitations and represents who you are.

Eat Well and Exercise

Eating well and exercising can also be a part of your self-care routine. They can both be impactful in your quest to manage your body image concerns during and after cancer treatments.

Fueling your body with the right foods and prioritizing physical fitness each day can aid healthy insides. It also helps you get in good shape and create the physique that ignites your confidence and self-esteem.

A balanced diet of fruits, vegetables, proteins, dairy, and grains is ideal. However, you should always follow the diet plans your doctor develops. Be sure to also consult them about the exercises that are appropriate for you during and after your cancer treatments to be safe.

Start Going to Therapy

Sometimes, trying to navigate body image concerns and all that comes with treating cancer on your own isn’t effective. You may need to rely on the help of a professional to really dig into your body image issues, cancer’s role in how you’re feeling, and how to improve your situation.

You can expect the following in your first therapy session:

  • Answering questions about yourself and what you’re currently going through.
  • The therapist explaining what kind of therapy they do and how they think they can help.
  • An opportunity to be open about what’s on your mind and follow-up questions from the therapist.
  • A summary of the session and setting goals for future sessions.

Go into therapy with an open mind and a vision for what you want out of it to get the most out of your sessions.

Keep in mind that there are many different kinds of therapy, including cognitive behavioral therapy, yoga therapy, and dialectical behavioral therapy. You can also engage in individual or group therapy, with remote or in-person sessions available. So, tailoring your therapy process to your needs won’t be an issue.

Develop a Support System

As weird as this sounds, it’s a good thing that everyone doesn’t see you the way you see you. If you’re struggling with negative thoughts about your body and image, it’s nice to know that there are people around you who don’t see those negative things as you do.

Instead, they see your strength, beauty, courage, and joy, and remind you of it often. They lift you when you’re feeling down. They keep you focused on what you can control and are with you every step of your treatment process. That’s the power of a good support system.

Make sure you have the right people around you to help you keep your body image issues in check.

You have enough to worry about during and after cancer treatments. How you look shouldn’t be on this list. Because regardless of the changes your body is going through, you’re beautiful. Believe this wholeheartedly and show yourself immeasurable amounts of grace during this time.

Thriving Not Just Surviving: A Breast Cancer Expert’s Perspective

Thriving Not Just Surviving: A Breast Cancer Expert’s Perspective from Patient Empowerment Network on Vimeo.

How can breast cancer patients not just survive but thrive? Expert Dr. Bhuvaneswari Ramaswamy shares actionable patient advice to strive toward optimal health while living with breast cancer.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

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What Are the Treatment Options for Early Stage Breast Cancer?

How Is Metastatic Breast Cancer Treated?

Why Should Breast Cancer Patients Engage in Care Decisions?


Transcript:

Katherine:                     

We start all of our Thrive Series with the same question. In your experience, what does it mean to thrive with breast cancer?

Dr. Ramaswamy:          

That’s a great question. I think it’s an important one because we always talk about surviving breast cancer, and that’s obviously the most important thing. We all want to survive, but we all also want more than that. We don’t want to just live, we want quality of life.  

And I think one thing that to remember is as soon as the breast cancer diagnosis is done, it’s in part – it’s difficult to say that you can thrive immediately. So, your focus is on really getting through the treatments and making sure it’s all done. So, at that time, managing the toxicities and getting through the stresses of going through the treatments and surgery, radiation, et cetera takes  over everything else. But as you finish that off you, you want to focus on what are the ways you can try to get back to the life that you had prior to breast cancer.

Now it’s difficult and it’s almost impossible to forget the big C word in your life. So, that’s going to hang and that’s going to kind of make anything you look at your perspective as slightly different. I mean, every pain could be worrisome because could it be a reference? Has the cancer spread? Or every bad news about another person could you, could transport that about yourself and then kind of worry about what could happen to you.

Every visit to the doctor, and particularly your oncologist, is going to   bring back memories. So, there are certain things that you can’t take away, but time can heal those. But what we talk about thriving is that you looking at factors that is going to make you and your body healthy. That is going to be exercise, being engaged in  whether your work or your family work and being joyful and seek what brings you joy, whether it’s friends, your work or your family.

And make sure you make time for that. And also eating right and diet is an important aspect of that. Not doing inflammatory diets such as highly fatty diets or meat-containing diet, but really kind of looking at your diet and your weight and your exercise. And trying to also discuss with your team about what are the symptoms you are having and how we can support you to mitigate those   symptoms. And really having conversations and somebody you can confide with to both manage your physical aspects as well as the emotional aspects.

And really kind of thriving and becoming   an advocate for yourself as well as for others who have breast cancer is what I would say is truly thriving with breast – with the diagnosis of breast cancer.

Breast Cancer Treatment Side Effects | What Are They and How Are They Managed?

Breast Cancer Treatment Side Effects | What Are They and How Are They
Managed?
from Patient Empowerment Network on Vimeo.

What should breast cancer patients know about treatment side effects? Expert Dr. Bhuvaneswari Ramaswamy shares common treatment side effects and explains her perspective on how to manage specific side effects for improved quality of life.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

Related Resources:

What Are the Treatment Options for Early Stage Breast Cancer?

How Is Metastatic Breast Cancer Treated?

Why Should Breast Cancer Patients Engage in Care Decisions?


Transcript:

Katherine:

Dr. Ramaswamy, along with treatment can also come side effects. What are some common side effects of breast cancer treatment?

Dr. Ramaswamy:          

Yeah, great question. Again, an important question for you all to consider. So, let’s divide our treatment  to targeted therapy and chemotherapy. The targeted therapy could be the estrogen receptors and then the  HER2 because the HER2, again, remember that biomarker. And then the chemotherapy that any patient with breast cancer could get, including, of course, the triple-negative. And then we’ll touch base  a little bit later on with the immunotherapy. So, when we look at the targeted therapy with estrogen receptor, anti-estrogen receptors, of course, it’s like putting you into menopause again. It’s like so you could have hot flashes, you could have some emotional liability and you could have vaginal dryness and sexual libido could be lower.

And also you could have joint aches and pains and your bone density could go down and cause osteopenia and osteoporosis and fractures. So, those  are some of the – and we can address all of those that we’ll come to later. With the HER2-targeted therapies, one of the main things will be the heart. These can affect the heart because there are some receptors that are present there that these HER2 therapies can affect the myocardial function. So, they don’t cause increase in heart attacks, but just the pumping action of your heart could go down. We keep checking your heart function to help with that. And then with the chemotherapies, other than your blood counts going down, these are acute events. Those blood counts could go down, which could put you at higher risk for infections. Again, some of the heart chemotherapies can affect the heart. So, we’ll keep an eye on that.

And, of course, fatigue that comes with all of these treatments that can happen. But some of those chronic things that can happen is also neuropathy. So, tingling, numbness in your hands and feet, even sometimes pain in your hands and feet. And then this can stay on for a little bit longer and can cause some trouble buttoning your shirt or playing the piano or putting your earrings. So, it can affect your  daily quality of life and cause pain. The other important thing, which we do have now an option is  also hair loss. I know that is something hard for age.  It’s so hard for women to lose hair and the consequence of being identified differently and not having that – when you look at the mirror, it’s a constant reminder.

So, we do have something called a scalp cooling that you could take an option and discuss with your doctors whether that how helpful that’ll be for your  type of chemotherapy and whether you could use it and you can – but 60 percent of the time not lose all your hair and need a wig. So, that is something that you can address. So, broadly, these are the issues that can happen. Again, this is very broad. Depending on your treatment, you still need to talk to your doctors.

Katherine:

How can some of these side effects be managed?

Dr. Ramaswamy:      

So, the key thing is to be first thing that I want to advise all our patients is that be vocal about your side effects. Okay? Sometimes we all think, okay, they did tell me I’m supposed to have all the side effects. I just need to keep quiet about it. That’s not what is important. And I think I did miss mentioning the GI tract changes like nausea, vomiting, or diarrhea. Again you think, oh, this is our part of all chemotherapy, I just need to keep quiet. No, that’s not the case because we actually give you anti-nausea medications before the   chemotherapy. So, if it’s not effective, you need to have to tell your doctors, “Okay, this time I had a couple of sensations of nausea, but no vomiting.”

Or “No, I was vomiting a lot.” Whatever it is. Even if you had just nausea, it’s important to tell your doctors. If it’s diarrhea, you need to tell them. We do give you some medications, but if it’s not working, you need to tell them. And again, we always underplay the issues with sexual side effects because you don’t want to talk about that. I mean, it’s not important. No, it is important.

It’s important for your intimacy, it’s important for your life, and it’s important for you to speak because there are supportive care therapies that we can provide. Neuropathy, again, I think your doctors will always ask you, but being vocal about it, being honest about it, and talking about it is important. So, again, fatigue.

They are going talk to you about exercise, because exercise does overcome that fatigue. But if you’re not able to do it again, it’s honest to say, “No, but I didn’t do what you said last time.” So don’t feel bad about it. And there could be other ways we can improve your fatigue too. So, again, sharing those side effects is important and we can. We can address all of these side effects. Now, I’m not saying the minute we address these side effects it’s all going to go away completely, but they can get better. And it’s important for you to talk about it and  get those supportive care measures.

Exercising After Breast Cancer: Myths vs. Facts

The benefits of physical activity for people who have undergone treatment for breast cancer are numerous, from reducing fatigue to helping regain a sense of well-being. However, as with diet recommendations, it can be confusing when it comes to how much exercise to take and the type of exercise that is safe during and after treatment.

Recently, I spoke with Cathy Leman, a registered dietitian, nutrition therapist, personal trainer, and survivor of hormone-positive breast cancer. Cathy shared many helpful tips and strategies for those who may be unsure where to start with an exercise routine after a diagnosis of breast cancer.

M.E.O’C.

What are some of the myths associated with exercise and breast cancer? When I had my surgery, I thought I shouldn’t lift anything heavy, such as weights.  And that rest is the best way to heal. Are these beliefs true?

C.L.

The two thoughts you had are very common! Immediately post-surgery, there definitely are weight limitations in place, yet once your doctor removes exercise restrictions, and gives clearance, there are no limits (other than an individual’s physical ability) on how heavy one can lift. Exercise also helps restore mobility and range of motion after surgery, and there is research identifying exercise as a way to support healing. By the way, it’s important to ALWAYS get your doctor’s approval to add or increase exercise post-surgery.

M.E.O’C.

That’s wonderful to hear, Cathy.  Let’s talk about the benefits of exercising now that we have been cleared to start.

C.L.

There are so many! Increased range of motion and improved mobility, reduction in fatigue, improvement in strength and stamina, and stress and anxiety management.

M.E.O’C.

What would you suggest to someone who feels intimidated by the current exercise guidelines, which recommend 150 minutes of exercise per week? You may feel exhausted from cancer treatment and this can seem like an overwhelming task.

C.L.

150 minutes per week translates to ~ 21 minutes per day. I recommend breaking that down even further, for example, 10 minutes of activity in the a.m. and 10 minutes of activity in the evening. Start small, with easy stretches and a walk around the block.

M.E.O’C.

I really like the idea of breaking exercise down into manageable chunks this way.  Okay, let’s move on to where and how to exercise. Gym visits may not be an option for everyone, especially because many of us are still cautious about being in public spaces due to Covid. How can we replicate some of the traditional gym exercises at home?

C.L.

Body weight exercises like squats, lunges, modified push-ups and planks are great for building overall body strength. Walking or running outdoors offers great cardiovascular benefits. During inclement weather, dancing, walking up and down stairs, and using online in-home workouts are ways to keep moving, even without visiting the gym.

M.E.O’C.

Thanks Cathy for taking the time to talk to us about exercising in ways that are achievable and beneficial, and dispelling some of the common myths around exercise and breast cancer.


About Cathy Leman

Cathy is the founder of HEALTH REBUILD 365, a program that helps post-treatment survivors of hormone-positive breast cancer end food fear, stress, anxiety and guilt, and make confident diet decisions that minimize fear of recurrence.

She also writes the dam. mad. About BREAST CANCER blog, and speaks to groups and organizations about the power of nutrition and lifestyle to optimize survivor health.

www.cathyleman.com IG; @hormone.breastcancer.dietitian

What Is the Importance of Culturally Competent Care?

What Is the Importance of Culturally Competent Care? from Patient Empowerment Network on Vimeo.

Culturally competent care is another way to work toward health equity. Dr. Nicole Rochester and Aswita Tan-McGrory discuss barriers to providing culturally competent care and ways to address the issues.

See More From Rx for Community Wellness

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Advice From Cancer Survivor to Better Whole Person Care

How Can Cultural Competency Play a Role in Your Care?

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

We know that due to structural racism, due to inequities, not everybody has access to fresh fruits and vegetables, healthy foods, not everyone has access to green spaces, nice parks where they can go outside and have safety and exercise, and that’s something that we’re being made increasingly aware of is how these social determinants of health impact healthcare. So I want to move and start to talk about the importance of culturally competent care, or I like to call it cultural humility, I don’t know that we can really ever be competent in someone else’s culture. But I want to talk about how those come together, this idea of being respectful and sensitive and aware of an individual’s culture and how that connects to some of the health inequities that we experience. So, Aswita, I know this is an area of expertise for you, so I’d love for you to chime in.

Aswita Tan-McGrory, MBA, MSPH:

Yeah, I mean, I would love it if every physician or nurse or PA started the conversation, what has been the biggest challenge for you in the last six months? If you ask that question, I mean, well the patient will be like, “Oh my God.” And not around just medical issues, they all align, right? If you don’t have housing, you’re going to have medical stress, like Broderick said. I’m just calm listening to you, so I’m going to guess that you have is really positive vibe that’s probably missing for many of us because we aren’t practicing the things that you encourage. And so I would just say that it’s really difficult in the system like I said, we set up, and we mentioned 15 minutes, doctors don’t feel like they have time to ask that question, but you’re doing it in other ways, we implement social determinants of health screening. Well, that’s really that question, right? But you formalize it because it’s not happening, so now it becomes like a screening question. And I will just say that we’re very narrow-minded in our view. I think I have seen a change in the very beginning when we started the work in our center in 2006, a lot of pushback was around thinking about what happens in the patient outside of our walls. It said,  “Well, I didn’t go to medical school to solve the problem of housing, I didn’t go to medical school to figure out how to get somebody on benefits.” And I think the healthcare system realized it doesn’t matter what you do in the hospital, it will be undone when they get home to a situation where they can’t maintain it, they can’t provide that support, they don’t…

They’re stressed out, they have mental health issues, so I think they’re finally getting there. But I think just acknowledging that the person in front of you has different experiences based on language, education, gender, ability, sexual orientation…I don’t think that’s a bad thing. I think you just need to own it, we’re working on it. So I do it better than others, but I don’t know any healthcare system, honestly, that’s nailed this to the way that we probably should, so…I’m with you, Broderick. We don’t do this very well, and most of my job includes dismantling these systems that we built to benefit the people in power and leave everybody else behind, and so that’s been really the focus in our work.

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile from Patient Empowerment Network on Vimeo

Chronic lymphocytic leukemia (CLL) patient Shirley felt she had a different experience not fitting the typical CLL patient demographic. Watch as she shares about her journey as a BIPOC patient, the value of clinical trials, and her advice to other patients for ensuring optimal outcomes.

See More from Patient-to-Patient Diverse CLL Clinical Trial Profiles

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Transcript:

Shirley:

In my late 30s, I started feeling extremely fatigued, and I went to my GYN. She ran a couple of tests, and she has sent me over to a hematologist because she just determined that it was something that she was not knowledgeable about. Then I had a physician contact me after several blood tests, and they had told me that it was a form of cancer, and it was leukemia, and it was called CLL, which is chronic lymphocytic leukemia.

When I heard the word chronic, I immediately thought, “Oh my God, this means like death instantly.” But they had told me that, “No, it was aggressive, but it’s definitely slow-moving,” and I have a great chance of fighting it. I was concerned because I did not feel like I wanted to be a lab rat, because I was told that I did not fit the demographics for having CLL. Most of the individuals were male of Caucasian descent, and they were much, much older than I was possibly in the late 60 to 70s, so I got a lot of stares and it made me feel very uncomfortable. So, I just didn’t want to feel like they were just like, “Okay, this is a different case. We can make a name for.” I wanted to make sure I was getting the best treatment.

I didn’t tell too many people in the beginning because I really didn’t know what was going on, but a lot of people was able to tell because no matter how much the time of sleep I got…I was always tired. The fatigue is just overwhelming. I decided to just remain optimistic about my future, because I know whenever you’re trying to battle any kind of ailment your attitude means a lot, you have to really put it out there into existence that you’re going to get better and you believe it, you have to really believe it in order to put that energy into finding out about the treatments and so forth. My doctors, they gave me a booklet that was maybe about it, and they said to me, “Take this home, study hematology and learn about your disease, how we’re going to be trying to treat it, and you know what you’re going to be feeling and you need to tell us everything if your nose itches, your eyes burn. We need to know everything that happens.”

And I was just not a complaining type of person, so there were plenty of times where I was experiencing like pain on my side and I was just like, “Oh, it’s probably just gas from the medication,” and then later found out that the medication they were giving me was enlarging my spleen, so it was pushing against my stomach, which was causing me an enormous amount of discomfort. So the doctors had to then give me other types of medication to help treat that issue that I was having, so it was definitely a long journey. This was an unusual diagnosis for someone of my heritage. The doctors explained to me that there was no blueprint for my treatment, this was, they were going to be trying things, they had a team of individuals, maybe it was like 10 or 15 of them, and they’re actually studying my case on this big screen in this room.

So it was constant medication, it was constant them trying, running the blood test, you were always, always getting blood tests, they were always giving you observations. Someone was always in your room, at least every two hours, checking to see what was going on. I just remember some time sitting in the hospital was just feeling very overwhelmed and definitely feeling isolated alone. I remember one time I was in so much pain, like my bones were hurting me so bad that I literally was just losing my mind in the bed. So they gave me some morphine, which I’ve never taken before in my life, and I wind up throwing up the chemo medication that they gave me. it was just so bad. So, the nurses and I were really overwhelmed at that point. I remember contacting family members and telling them, “I need to get out of here, I feel like they’re just trying whatever they want to try on me, and I don’t think it’s working. I don’t feel this is the place for me, like I need to really get out of here.”

So my doctor who was actually giving a seminar in Switzerland was just like…he was really amazing. He said to me, he said, “You are my prize patient. I am working every day really hard trying to get you back to being your 100 percent yourself,” He said, “You’re always like a light of sunshine.” The women that he worked with are always looking in the patient portal, and they’re like, “Shirley is coming in,” like, “Oh my gosh, she’s coming today.” And they’re excited because I always maintained a great attitude, and I always came in there dressed up.

So my doctor also recommended it when my treatment, a hospital stay was over for me to practice on taking out walks and exercising, yoga was very good meditation, they told me to get all these apps on my phone and therapeutic massages, those have been like a savior for me. I think having a good support system around you is extremely important, people who understand. Never be afraid to tell people what exactly you are experiencing. The mental fatigue that you go through is really unpredictable, and it’s off because that was not something that they, that no one prepared you for. So my doctor and his colleagues, they were just one of the greatest teams that I have experienced, them being very transparent about what was going on with me, even when I was at one time being very stubborn, I got so upset that I pulled the IV out of my arm and I was like, “You know what, I’m not doing this, I’m tired. I’ve got to get out of this hospital. I can’t stay here.”

I mean, people were just so sick, and this is not me. And they had to assure me, “It is you. You are sick, and you do have a blood cancer, and the sooner you come to terms with that, the more calm you’re going to be in being susceptible to accepting treatment. We’re here to help you, but we need you to tell us if something is not working, you don’t feel good on what’s going on in your body, we need to know.” The blood tests don’t lie, they tell them exactly what’s happening, the doctors know if the treatment is working, they monitor the CLL extremely closely. They were way more advanced at honing in on the type of treatment that I needed, so I was really assured that you’re in the right hands, and after when I started feeling a little bit better, then my trust totally opened up in staff, because I saw that they were excited about my treatment working. They were giving me the three combinations of chemo, and they were like, “This combination is working for you now.”

They started a new trial which was bringing in venetoclax (Venclexta) along with the rituximab (Rituxan), and that is what really started sending me on a better path, getting better. And then once I came off of the rituximab, which was an IV-infused chemo treatment, they decided to just keep me on the pill form of venetoclax, I was able to go into the office, which I was ecstatic about.

Advice I like to give to patients who are considering a clinical trial is definitely ask a lot of questions. Don’t be afraid, don’t be shy or hesitant and don’t feel like you feel like you’re ignorant. And always address it with a positive attitude. Keep in mind that they are there for your best interests and trying to get your health back to normalcy. Just know that you’re not in it alone. And always find someone that you can always have a conversation with if you don’t feel comfortable. Never be afraid to ask questions and just even if you do look different as opposed to everyone else that… and just get that everyone else that is sick. Don’t feel like you’re in it alone, regardless of how you look for what your demographic background is, just know that the team that’s there that’s in place is always fighting for you, and you can always say no or get a second opinion. That’s very important to know that you have options.

So, never feel afraid to ask about the clinical trials and do your research, it’s important. It’s inspiring to see people on the leukemia organization website that are exercising, they go for runs right after they receive treatment, that inspired me to say, I’m going to out and take the dog out for a walk or go out for a run and help myself get better,” and it works. It works, it really does.