What Do Breast Cancer Patients Need to Know About COVID?

What Do Breast Cancer Patients Need to Know About COVID? from Patient Empowerment Network on Vimeo.

Due to COVID-19, many patients with breast cancer have faced new challenges when it comes to receiving care. Dr. Lisa Flaum addresses precautions when receiving care, and the role of telemedicine in virtual care. 

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

Right, so COVID has introduced challenges for all of us, for cancer patients specifically. However, we have not typically altered our recommendations for appropriately treating patients based on COVID. So, any of the treatments that would be appropriate are still appropriate, and for most patients, I’m recommending that they follow the guidelines that they are likely following otherwise. I think that a lot of the precautions that are put in place from a COVID standpoint, which are people are washing their hands, and sanitizing, and wearing masks, and keeping distance, and not socializing and big crowds, all of those things are already helping our patients and certainly prevent COVID, but also prevent all the normal stuff that people are typically exposed to when they’re going through a cancer diagnosis.

What I tell people is that they’re already probably going above and beyond what we would have recommended in a normal setting of metastatic cancer. Although they’re likely at a little higher risk, depending on what they’re receiving, than the general population, for the most part, patients have done well and we have not seen an excess number of COVID cases in our patient population. Again, it’s likely because people are doing the right things anyway, COVID or not COVID, and certainly regardless of their cancer diagnosis.

I guess the one change or the changes that we’ve made is implementing a little more tele-medicine versus in person visits when it’s appropriate. So, there are things that we can accomplish over the phone in terms of managing side effects and asking how patients are doing.

Obviously we can’t do an exam, we can’t do imaging, but a number of things can take place over the phone and we’ve made accommodations in terms of some of that to allow for patients to stay out of the hospital setting as much as possible.

In some situations, it has impacted decision making if there’s a choice between one treatment and another, and one is more aggressive or more suppressing of the immune system, if you’re going to weigh the normal pros and cons and we’re always going to throw COVID into the mix. Well, if you’ve got this particular treatment, your immune system shouldn’t be as suppressed, you don’t have to come in as often, you don’t require an IV. So, the variables definitely come into play, but certainly COVID doesn’t prohibit us from choosing any given option, but it affects some of the discussion in most cases.

Are You Prepared for Your Breast Cancer Appointment? Expert Tips.

Are You Prepared for Your Breast Cancer Appointment? Expert Tips. from Patient Empowerment Network on Vimeo.

Could you be better prepared for your breast cancer appointment? Breast cancer specialist, Dr. Lisa Flaum reviews helpful tools that can help ensure patients get the most out of their doctor visit.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

I think they should think ahead of time about what issues are most important to them, have a list of questions, whatever they might be. And hopefully, our job, if we’re doing it well, is to answer the questions that the patients don’t even necessarily know to ask. So, I think that the important thing is not so much a specific question, but getting your questions answered, sort of walking out of that initial visit at least with a preliminary understanding of what your diagnosis is, what the implications are, what the decision making is regarding treatment. And understanding why your doctor is choosing the treatment that they’re choosing or recommending and what your alternatives are.

And I think knowing what the balance is. So, not just, okay, you’re choosing this because you think it’s most effective, but then how do you balance it with quality of life, with side effects, and with all the other variables that go into that choice. Patients have different perspectives in terms of how much information they want, in terms of the bigger picture. Do people want information about prognosis? Is that even answerable at an initial visit? So, a lot of it differs in terms of what the patient’s desires are and where you are in the workup to know how best to answer those as well.

The other thing I would say about preparation for a visit is, it’s important to have someone with you, either in-person or remotely given the circumstances. So, an initial visit with a medical oncologist can be overwhelming and having a second set of ears and eyes and someone to take notes so you can listen, is really helpful. Because often patients walk out of that visit forgetting everything that was said, or at least not comprehending all of it immediately. So, always having another set of ears or eyes listening is really important.

Should You See a Breast Cancer Specialist?

Should You See a Breast Cancer Specialist? from Patient Empowerment Network on Vimeo.

As breast cancer treatment options continue to expand, it’s important to partner with a physician who is up to date on the latest developments. Dr. Lisa Flaum explains why patients should consider seeking a specialist and obtaining a second opinion.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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How Can a Breast Cancer Psychologist Help You?

Are You Prepared for Your Breast Cancer Appointment? Expert Tips.

What Do Breast Cancer Patients Need to Know About COVID?


Transcript:

Dr. Flaum:                  

So, in terms of who you should see as a medical oncologist and whether you need a breast cancer-specific specialist. I do think it’s a good idea for the majority of patients do at least have an opinion with someone who specializes in breast cancer. Increasingly, cancer diagnoses of all kinds, and breast cancer specifically is becoming more complex. There’s a lot of variables that guide treatment, and it’s important to have someone on board who’s up to date on the latest knowledge treatments, clinical trials if indicated.

Sometimes it makes sense to see a breast cancer specialist, but potentially get your care with whoever is more easily accessible in terms of an oncologist closer to home, if that makes sense. But to at least start with an opinion by someone, from someone who specializes in breast cancer.

I think the patients should seek a second opinion when they think it’s appropriate. And it’s often appropriate; even if it’s just for peace of mind to know that what you’re hearing from your initial visit is, if there’s agreement amongst specialists. Most doctors, I can speak for myself personally, do not get their feelings hurt when someone asks for a second opinion and often I encourage it. I think it’s helpful from a patient peace of mind standpoint, and it’s even appropriate to ask your doctor if I’m going to seek a second opinion, is there somewhere you would recommend that I go. I think it’s appropriate if you have a doctor in a community practice and they may have a referral system of who they would refer to.

And even then from an academic standpoint, if someone asks me where they could or would go for an opinion, I would recommend colleagues at other institutions who I think would be appropriate. So, I think you have to advocate for yourself. You have to do what’s best for you. And number one, I don’t think feelings will get hurt. And number two, I don’t think that’s the reason to not get the care that is appropriate.

How Can a Breast Cancer Psychologist Help You?

How Can a Breast Cancer Psychologist Help You? from Patient Empowerment Network on Vimeo.

Dr. Kathleen Ashton shares advices for patients facing a breast cancer diagnosis, including tips for emotional coping, talking to friends and family, as well as utilizing support services.

Dr. Kathleen Ashton is a psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton, here

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Metastatic Breast Cancer: Accessing the Best Treatment for YOU

Transcript:

Dr. Ashton:                

My name is Dr. Kathleen Ashton. I am a breast psychologist at the Cleveland Clinic Breast Center.

So, I work with breast cancer patients in a number of different ways. I work with patients when they’re first diagnosed in terms of adjusting to their diagnosis and managing treatments. I work with long-term survivors of breast cancer who might be dealing with symptom management or the emotional after effects of their cancer. And then, I work with metastatic breast cancer patients as well. 

Some of the common fear is that breast cancer patients experience are progression. They worry about how their disease is going to affect their family. They might worry about managing symptoms like fatigue and pain. And they also worry about their quality of life and maintaining the things that are most important to them.

When I work with patients who are worried about how metastatic breast cancer is going to affect their life, I often use two specific types of therapy.

One is called cognitive behavioral therapy which deals with the different thoughts that a patient might be having about their breast cancer as well as the different behaviors they might engage in that either help them or hurt them with their emotions. And then, the second type of therapy I often use is called acceptance and commitment therapy. And in particular, for metastatic breast cancer patients, this is a really helpful type of therapy that focuses on values, what gives people meaning in life, and whether their actions are in line with their values.

When metastatic breast cancer patients come to me for advice, one of the first things I usually tell them is that metastatic breast cancer is an emotional roller coaster.

There are ups and downs, there’s scans, there’s new types of treatment that they might be encountering and wondering about what the side effects are. So, what can be most helpful to those patients is really learning to stay in the present moment to, kind of, cope with things as they come and not look too far ahead, but also, be able to enjoy the moment that they’re going through.

When sharing their diagnosis with their family and friends, metastatic breast pit – breast cancer patients may experience just misunderstanding in what it means to have metastatic breast cancer. They may need to educate their family and friends that the goal of their treatment is often not a cure, but there are still treatments that can be helpful for them, and they can still maintain a good quality of life.

As a patient, if you’re interested in seeking a second opinion, it’s important to know that getting a second opinion is very normal with metastatic breast cancer. And your providers often are expecting this and would support that. So, just sharing with your provider your plan, the specific questions that you might have can help to facilitate communication between the two of you.

It’s important to know, as a breast cancer patient, that there are many resources to help deal with emotional issues. So, there are psychologists, psychiatrists, social workers who often have specific expertise in working with breast cancer patients. In addition, there are other resources such as cancer support communities, there are patient networks that help patients talk to each other.

There’s one called 4th Angel that we use a lot at the Cleveland Clinic that’s very helpful. And there’s alternative therapies as well, things like yoga, art therapy, music therapy that are all available to metastatic breast cancer patients.

When facing metastatic breast cancer, it’s important that patients know that they can lead meaningful lives, have close relationships, and have good quality of life. I also would add that, it’s important for them to know that mental health can be a part of their treatment team, that it’s common to have anxiety and depression, and just stress management concerns, and psychologists, psychiatrists, social workers all might be possibilities to add to their team to help them to have a good treatment outcome.

Understanding Patient-Centered Care via Alliance for Patient Access

The Alliance for Patient Access created a video to help you understand patient-centered care.

Overall Health and Mindfulness Improves Treatment Response: An Expert Explains

Overall Health and Mindfulness Improves Treatment Response: An Expert Explains from Patient Empowerment Network on Vimeo.

Dr. Sangmin Lee shares the benefits of meditation and yoga and explains how mindfulness can affect your overall health.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

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Transcript:

Patricia:

How about this one? A positive attitude and mindfulness can improve treatment response.

Dr. Lee:

Absolutely. Absolutely. Treatment for leukemia can be tough. Some of the treatment involves intense chemotherapy. Treatment for leukemia can involve stem cell transplant. And a key important aspect of treatment is being healthy and being optimistic about treatment, because a lot of treatment can have side effects, and side effects can be not as apparent if you are physically more active, and in a good state. So, I think that having a positive outlook is very, very important.

Patricia:

Quality of life issues are difficult for some people. How do you talk with your patients about their quality of life, and staying healthy during their treatment?

Dr. Lee:

So, quality of life is absolutely important. I mean, the whole point of treating leukemia and any other treatment is not only to address the leukemia, but also have good quality of life. So, when discussing treatment options, you always have to balance the quality of life and side effects versus potential benefits. So, that’s always on our mind when discussing potential treatment options, and how it impacts the quality of life. Throughout the treatment process, we always tell our patients that being active, and having a good quality of life, and having good nutrition, is absolutely important, because that’s a key aspect of treatment for leukemia.

Patricia:

What about meditation and yoga for coping with anxiety around cancer diagnosis and treatment? Mindfulness.

Dr. Lee:

Absolutely, absolutely. Those can help. Especially having leukemia, it’s very life-changing, so a typical way that patients are diagnosed with acute leukemia is patients live a normal life, and then they develop, all of a sudden, abnormalities. And they’re diagnosed with acute leukemia, and it can be very sudden. And it can be very difficult. So, that can understandably make patients have anxiety, and other issues.

And I believe that meditation, and yoga, and other exercises can absolutely help cope with this.

Patricia:

And there’s tons of resources for meditation and yoga out there, that are reliable.

Dr. Lee:

Yes. Yeah.

Patricia:

Yeah. Should patients regard yoga and meditation as part of their treatment, as part of their self-care, during this process?

Dr. Lee:

Absolutely, absolutely, if the patients are into meditation and yoga. Meditation is very harmless, and it can absolutely help in terms of guiding their mind through their treatment journey. Yoga is good if you’re physically able to do it. So, one caution is that, if you’re not someone who does yoga normally, then you should start off slow, and not push yourself as aggressively.

My Breast Cancer Story

I was diagnosed with breast cancer in 2011. It was found by accident on a chest x-ray, and I was shocked. There was no history of breast cancer in my family, and I never thought it could happen to me.

Cancer patients are supposed to be upbeat; we are supposed to relax and trust that our doctors will provide the best possible care. I had never had a serious illness before, so I was naïve about what to expect from the medical establishment. I wanted to feel that I was safe and in good hands, and that I could simply follow my doctors’ advice. Unfortunately, that was not my experience.

Our physicians are usually our primary source of information, but the fact is that medicine in the USA is a business. Physicians are paid for their time, so unless a patient is a family member or a VIP, most physicians will not allot a patient any more time than the number of minutes that is the “standard of care.” Some doctors are more caring than others, but the for-profit system that we have in the United States rewards oncologists financially if they squeeze in as many patients as possible. A surgical oncologist will want to do surgery; a medical oncologist will want to do chemotherapy; a radiation oncologist will want to do radiation. This is what they know and what they are paid to do; and most oncologists want to get on with it as quickly as possible.

What they will usually not do is spend extra time consulting with specialists and/or looking in the medical literature for newer and better ways to treat their patients. They will generally not become knowledgeable about any kind of treatment outside their specialty, such as nutrition or any type of complementary medicine. I suspect that most oncologists would be willing to spend the time if they were paid, but insurance in the United States will usually not reimburse for these kinds of activities. In fact, the extra time that an oncologist would have to spend would actually cause them to lose income.

It seemed to me they just wanted me to follow their program, but I knew from even a very quick survey of the literature, that cancer decisions are not easy and simple. The treatment is often unsuccessful, and the side effects can be life threatening. Every patient’s case is different, so the “one-size-fits-all” approach on which traditional cancer treatment is based may not be the best way to proceed. Every year 40,000 women in the United States die of breast cancer after getting the standard of care. I did not want to be one of those statistics.

Because I have an academic background, it was natural for me to jump in and do a lot of research. I went to books, journals, and the Internet. I also got a huge amount of help from other patients. I told lots of people that I had breast cancer, and I gave them permission to tell anyone they wanted. My thought was that the more people they told, the fewer I would have to tell. But I had a huge side benefit—because breast cancer is so common, lots of former patients offered advice and support. I also joined a local breast cancer support group and an online support group at breastcancer.org. These patients were incredibly valuable to me. They referred me to doctors, including an integrative oncologist; they told me how to save my hair through chemotherapy; they told me about a program to reduce side effects through fasting; I was able to avoid neuropathy, mouth sores, and much more.

As of now, I have no evidence of breast cancer, but I am at high risk for recurrence or metastasis, so I am not able to simply return to the life I had before. Conventional cancer care offers periodic tests to see whether the cancer has returned, but it does not offer anything beyond hormone therapy to prevent the cancer from returning. The problem is that if it returns it will likely no longer be curable. I had to go outside of conventional oncology, where I found a lot of evidence that changing one’s “terrain” can keep the cancer dormant. Working with an integrative oncologist, I follow a program of diet, supplements, exercise, mental/spiritual practices, and avoidance of environmental carcinogens.

I learned a great deal from my cancer experience that most people don’t know, and I wanted to share my experience. I wrote a book that I hope will help other patients take charge of their care, to help them make the best medical decisions and to stay in remission afterward.

A Yoga Technique to Increase Relaxation and Reduce Anxiety

Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.

You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.


Transcript:

Raquel Forsgren:

So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that.  And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.

Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels.  Just feel the body itself.  Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way.  Don’t analyze it.  Don’t go into any thinking other than just noticing.

Begin to expand your muscles in your ribs as you take your next inhale.  Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales.  And I want you to bring to mind one thing you’re really grateful for today.  One thing.  The next before we move on, bring to mind a goal, an intention.  It could be how you want to feel for the rest of the day, emotionally or physically.  How do you want to feel or what do you need?  Beautiful.

Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together.  We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.

So as you inhale just open your arms like an (? cast) or goal post.  And you’ll need to adjust this.  If you have had surgery along the central plate, take it nice and easy, just open, inhaling.  As you exhale bring your arms together, touching your palms together, elbows and forearms.  Inhale, open the arms again.  Exhale, closing the arms together.  Just take two more only moving with your own breath.  And closing.  One more time just like that, beautifully opening and relaxing.  And releasing the palms back down on your hands.

Close your eyes one more time.  I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted.  I just want you to notice.  And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done.  It’s published in the literature.

It’s called alternate nostril breathing.  You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off.  So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time.  And I want you to breathe normally and naturally, okay.  So this isn’t anything forced.

Close off the right nostril first, and just delicately push it.  You don’t have to push it clear into your nose.  Just delicately push it.  Exhale all the way out the left side of the nostril.  Then inhale through the left nostril, exhale out the right nostril.  Inhale through the right nostril, exhale out the right nostril.  We’re going to do three more of these.  Inhale through the left, exhale out the right.  Inhale through the right and exhale a little longer out the left.  One last time.  Inhale through the left and exhale longer out the right side.

Bring your hands back down to your lap and close your eyes again.  Take a nice normal, natural breath.  And I want you to notice what’s different in your breathing, if anything.  Just notice it.  Notice your heart beating.  Come back to that intention or that goal you set for yourself.  And softly blink open your eyes with a smile.  I’m expecting all of you watching to be smiling even though I can’t see you.  And Namaste.

Coping With Anxiety and Depression

An expert panel discusses different methods to cope with anxiety and depression through all the phases of a cancer journey. Jane Williams, MSN, RN, FNP, says one of the best ways is to communicate openly with your healthcare team and loved ones. Letting them know how you feel and what you need can lead to you feeling better. Remember that you’re not alone in your journey, and sharing your emotions can help you figure out what works best for you, whether that be running, meditating, etc. Watch the full video below for all the panel’s advice on coping with anxiety and depression.

Coping With Anxiety and Depression from Patient Empowerment Network on Vimeo.

Healing vs. Curing

Healing vs. Curing from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss healing vs. curing and how a healthcare team should focus on what it means to each individual patient.

Supportive vs. Palliative Care

Supportive vs. Palliative Care from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the definitions and differences of supportive and palliative care, and what it means to them

The Emotional Side of Cancer

The Emotional Side of Cancer from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and cancer survivor Randy Broad discuss the emotional side of cancer and how symptom and comfort management should be apart of your treatment from the beginning.

Connecting to Cancer Patients Online

Deana Hendrickson talks about how important it is to connect with other patients and advocates online. Connecting online to patients with your same disease allows you to make amazing and empowering connections. Check out the whole clip below as Deana explains:

Empowering Lung Cancer Patients Town Meeting from Patient Empowerment Network on Vimeo.