PEN Blog Archives

Checking the Pulse on Multiple Myeloma Health Disparities

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Even before the coronavirus pandemic arrived, health and patient support organizations made resolute efforts to examine and address health inequities for multiple myeloma patients in Black, Indigenous, and People of Color (BIPOC) communities. Diverse Health Hub and the Patient Empowerment Network partnered to help improve health outcomes for underserved myeloma patients through the Diverse Partners in Your Myeloma Care program. With a tumultuous year filled with the killing of George Floyd, social unrest, and coronavirus health disparities for BIPOC groups, these issues prompted us to focus on where things stand with multiple myeloma health disparities. We’ll take a look at what we know, what we’ve learned, and what help and resources are needed to continue advancing care for BIPOC myeloma patients.

Disparity Facts About BIPOC Myeloma Patients

  • Both Black Americans and Latina and Latino Americans show a myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, more frequently than others—.88 percent in Black Americans, .44 percent in Latina and Latino Americans, and .22 percent in white Americans.

  • Although multiple myeloma is diagnosed at a younger age in both Black Americans and Latina and Latino Americans, both groups are less likely to receive a transplant and start treatment later than patients of other races.

  • Black Americans are actually known to have less aggressive myeloma, which should show better health outcomes—yet that is not the case.

multiple myeloma diagnosis.png

Learnings About BIPOC Myeloma Patients

Black and other BIPOC patients often have mistrust of doctors and researchers due to past experiments like the Tuskegee Study and Henrietta Lacks – whose now infamous immortal HeLa cells were taken without her consent. “If I were to walk into any community, African American community, or underserved community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African Americans contributing, being donors, African Americans participating in trials. It all feeds over into everything that’s done in the African American community or underserved community in regards to healthcare,” says patient navigator Diahanna Vallentine.

Barriers to care must be overcome according to Dr. Sikander Ailawadhi from the Mayo Clinic, “Myeloma patients who are African-American and Hispanic typically get to the right treatment much later. In a lot of cases they may not get to the right treatment at all. We also know that the burden of cost of care is much higher for minority patients.”

Improvements are happening in care as explained by Dr. Ajay Nooka from Emory University School of Medicine, “What’s really interesting in this meeting is that there has been a lot of large database integrations, including one database called the National Cancer Database (NCBD) where people have looked at 20-year history of how these treatments have panned out. Which of the minority populations or which subset of patients gained the most benefit over the last 20 years? And we see minorities have gotten a lot of improvement and a lot of access to care over the last 20 years, but that’s not the end of the story, we have to catch up a lot more.”

The Path to Health Equity

Although the additional focus on health inequities has started to improve access to care, there is still a critical need to raise awareness about the treatment gaps for myeloma patients in BIPOC populations. How can myeloma patients get the best care no matter where they live when factors like age, geography, socioeconomic status, ethnicity, gender, and insurance type heavily influence the path to better health outcomes?

Some valuable steps that patients, community leaders, and healthcare providers can take to improve care include:

  • Support organizations providing educational materials to patients that are target specific BIPOC groups

  • Patients and advocates making the BIPOC voice heard by asking for funds from community and political leaders to improve care

  • Healthcare providers developing relationships and partnerships with political leaders and support organizations to continue building momentum in improving patient care

  • Patients taking advantage of social workers and patient navigators at their clinics and support organizations

  • Patients, advocates, and healthcare providers working to increase clinical trial participation

  • Healthcare providers integrating cultural competency as a universal approach in the healthcare model

Resources like myeloma patient resource guides, informational graphics, and the Myeloma Coach section on the Myeloma Crowd website provide valuable information for patients. And though trust of clinical trials by BIPOC populations remains an issue, there are initiatives like Diversity in Clinical Trials Benefits Everyone. BIPOC patients can take action working together with medical researchers to increase clinical trial participation to improve and refine myeloma treatment developments for specific patient populations. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” program is a public health initiative designed to remove the barriers that prevent inclusive access.

Participating in clinical trials not only will improve myeloma treatments down the line but also provides a minimum of standard of care treatment at no cost to the patient. It’s a win-win for both the patient who participates in the study and  also helps the progression of treatment for BIPOC patients diagnosed with myeloma in the future. Though progress has been made, patients, advocates, community leaders, and healthcare providers must take action to continue an upward movement to achieve equitable care that BIPOC myeloma patients deserve. Take advantage of the resources below and continue to visit our Multiple Myeloma Hub as we publish more on health equity developments for multiple myeloma.

Resources to Learn About Improving Myeloma Health Disparities

Disparities Around Health Technology Access for Subset of Myeloma Patients

Good News for Myeloma Treatment Today – Still Addressing Race-Associated Risks

2020 Shaping Up to Be a Big Year for Multiple Myeloma Treatment

How Can a Myeloma Patient Advocate/Financial Advisor Help

Is It Possible to Achieve Health Equity in Multiple Myeloma?

Are Myeloma Clinical Trials More Critical for African Americans?

A Multiple Myeloma Advocate’s Uphill Battle to Care

What Do Disparities in Multiple Myeloma Look Like?

How a Second Opinion Saved a Myeloma Patient’s Life 

Myths vs. Facts: Myeloma Health Disparities Care Infographic

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? Resource Guide

Diversity in Clinical Trials Benefits Everyone

Sources

How Can a Myeloma Patient Advocate/Financial Advisor Help? Patient Empowerment Network website. https://powerfulpatients.org/2020/08/17/how-can-a-myeloma-patient-advocate-financial-advisor-help/ Accessed October 19, 2020.

The Value of PEN: Your Path to Patient Empowerment

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Start here. That is the message Patient Empowerment Network (PEN) is sending to cancer patients and care partners in the first of a series of five videos introducing PEN and its programs. Getting a cancer diagnosis can be a confusing and overwhelming time. No one gives you a handbook to help guide you through treatment options, doctor visits, and all the information coming your way, and it can be hard to know where to begin to make sense of it all. PEN is where you begin. Through free online resources that help to educate cancer patients and care partners about the options for the best possible care available, PEN serves to guide and support you step by step through your cancer journey.

In this first video you will be introduced to PEN through three of the members who serve on PEN’s diverse, talented, and entrepreneurial-minded board of directors. Two of the members are also cancer survivors. Board Member Scott Riccio describes PEN as the first step to take after someone is diagnosed with cancer. He says that PEN shows patients how to learn what to do through empowerment and building confidence.

In addition to educating patients, Board Member and Cancer Survivor Nancy Gatschet says, PEN plays the role of coach for your cancer journey marathon. She says PEN empowers you every step of the way. Board Secretary and Cancer Survivor Dr. Sajjad Iqbal adds that PEN uses knowledge to empower cancer patients. Knowledge about your illness helps you to be proactive in your treatment, which can lead to a better outcome and higher survival rates.

As you will learn throughout this video series, PEN has a variety of programs to help improve a patient’s journey, and these resources are completely free and available to you any time you need them. You can access PEN 24 hours a day, every day. Cancer doesn’t take time off and neither do the PEN resources.

So, start here. Watch the first video, find out how PEN can support you, and get involved.

Your Path to Patient Empowerment from Patient Empowerment Network on Vimeo.

#patientchat Highlights: Checking the Pulse on Patient Influencers

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Last week we hosted a “Checking the Pulse on Patient Influencers” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Patient Advocate/Activist Over Influencer

“Supporting patients (regardless of approach) is paramount”

What is a patient influencer?

Full Transcript

5 Ways a Patient Portal Can Improve Your Health Care Experience

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A patient portal is an online application which gives patients access to personal health information stored in a health care organization’s electronic health records (EHR). If your doctor’s office offers a patient portal, consider these reasons why you should take advantage of the service.

Schedule Appointments

Use the portal to request or schedule appointments with your health care providers.

Request Refills

Giving you a convenient way to request refills should make it easier for you to keep up with refills and avoid lapses in the medication regimen. One study found that patients who use the portal to request refills of cholesterol medications took the medications more consistently and had better cholesterol levels (compared to patients who didn’t request the refills online).

View your Records

With a patient portal, you gain access to critical health information that was previously locked up in the EHR. A typical portal allows you to view your test results, medications, immunizations, and allergies. A summary of your doctor visits and educational materials may also be available. You have the right to view this information and use it to participate more fully in your health care.

Improve the Accuracy of Your Records

Keeping a list of your medications may seem like a straightforward task for a health care provider using an EHR. However, there are several reasons why your medication list may not be current and accurate, reflecting the name and dose of all the medications you are taking:

  • Human error in entering the medications into the EHR
  • Incomplete information at time of medication entry. For example, in your first visit to a doctor, maybe you remembered the names but not the doses of your medications.
  • Over-the-counter medications are frequently overlooked
  • Providers from multiple health organizations are prescribing medications for you
  • You stopped taking a medication

Fortunately, some portals give you the opportunity to submit corrections to your medication list and other parts of your record. This type of feedback loop is designed to improve the quality and safety of your care. In small pilot study in the Geisinger Health System in Pennsylvania, patients used the portal to submit corrections such as:

  • Add over-the-counter medications, vitamins, and supplements
  • Add medications prescribed by providers outside the Geisinger system
  • Remove medications they had stopped taking
  • Make corrections in the frequency and doses of medications

Communicate with Healthcare Team

A patient portal allows you to exchange secure messages with your healthcare provider. Rather than wait on hold or play phone tag, you can submit a question at your convenience. The response time may depend on the triage system used by the medical office for electronic messages, the content of your message, and the frequency with which your provider checks messages. A systematic review showed that patients who communicate electronically with their health care team can enjoy improvements in the following health dimensions:

  • Knowledge about their health condition
  • Ability to cope with and manage chronic health issues
  • Blood sugar, blood pressure, cholesterol, and weight (for patients with diabetes)
  • Control of asthma and quality of life (for patients with asthma)
  • Chronic back pain
  • Self-esteem and empowerment
  • Stress, depression, and loneliness

Note that electronic messaging isn’t appropriate in all medical situations.

When You Should (and Shouldn’t) Email Your Doctor

If you don’t already do so, you probably wish you could communicate with your doctor by email. It would align your health care experience with the rest of your increasingly digital life. Who wants to play phone tag or be put on hold when dealing with health issues?

Emailing your doctor is best done through a patient portal linked to your electronic health record (EHR). This allows your doctor to view your medical history, medications, and test results when responding to your email.

Patient-doctor email will likely increase as patient portals become more widespread and federal incentives for email are rolled out. Someday, emailing your doctor may become part of standard medical care.

However, email is not suitable for all health-related situations. Just as there are rules of etiquette for work-related emails, there are a few guidelines for emailing with your doctor. This article will outline a few scenarios where it is appropriate and not appropriate to email your doctor.

Email your Doctor if . . .

You have a straightforward question which can be answered in one or two exchanges.

You can save yourself an office visit by taking care of the issue by email. For example, if you just need a refill of a medication you have been taking for a long time, and you’re otherwise doing well, then an email may save you and the doctor some time. Depending on the nature of the request, the doctor may forward the message to another member of the medical team or office staff. Some offices designate a nurse or assistant to screen all the messages and assign them to the appropriate recipient.

Note that the email exchange may not be free, because doctors can bill for the time they spend responding to your email.

You have been waiting longer than expected to hear about test results or other pending issues. Doctors can easily get bogged down with their responsibilities. A timely reminder from you is helpful.

You forgot or needed some clarification of what your doctor said during a recent visit. It can be tough to remember or process everything that you and your doctor discussed. Sometimes it’s best to tie up the loose ends by email.

You can supply information that your doctor requested, such as home blood pressure readings, or results of a test you had at another health care facility.

Don’t Email Your Doctor if . . .

You are reporting sudden or severe symptoms which could indicate a medical emergency. You may not get an immediate response, and your condition could deteriorate as you wait for a reply. Email in a medical setting is only appropriate for non-emergencies.

You want to discuss a complex issue that would require a lengthy back-and-forth discussion. These issues are best discussed on the phone or in person.

You want to discuss an emotionally-sensitive topic which can’t fully be addressed by email. Facial expressions and body language are important in communication. Sometimes an old-fashioned office visit is best.

You are unsure of the security of the email transmission. Patient portals are designed to be secure. But if you’re emailing your doctor at “Doctor@mail.com”, the message could be intercepted.

Once your email becomes a part of your medical record, other people who have legitimate access to your record may see it.

How Can You Advocate for the Best Breast Cancer Care?

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How Can You Advocate for the Best Breast Cancer Care? from Patient Empowerment Network on Vimeo.

Breast cancer expert Dr. Julie Gralow explains how you can advocate for the best metastatic breast cancer care, through speaking up, utilizing care team members and taking key steps to achieving better care.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

How Genetic Mutations Affect Metastatic Breast Cancer Disease Progression and Prognosis

Factors That Guide a Metastatic Breast Cancer Treatment Decision

What Could Metastatic Breast Cancer Genetic Testing Advances Mean for You?

Transcript:

Katherine:                  

For patients who may be hesitant to speak out for themselves and advocate for their own care and treatment, what advice do you have?

Dr. Gralow:                

You have a whole team who’s behind you, and I’m the MD on the team, but I’ve got a nurse practitioner, and a nurse, and a scheduler, and a social worker, and a nutritionist, and a physical therapy team, and financial counselors. I’ve got a whole team who works with me. And so, a patient might be hesitant to speak up during the actual appointment with their physician. It’s a short amount of time. I would recommend come into it with written-down questions because things go fast. You don’t get a lot of time with your doctor.

Things go fast, but don’t come in with 25 questions, either. Pick your top few that you want to get taken care of this visit because if you come in with 25 or 30, you’re going to lose the answers to most of them. Maybe bring somebody with you who’s an advocate and a listener for you who could be taking notes, so you can process and you don’t have to write it down, or ask if you can record it. It’s really important if you’re newly diagnosed or maybe there’s a progression and you’re going on a new treatment. That’s okay too.

But, I would also say you have a whole team behind you, so sometimes, if you don’t have time or if you’re hesitant to speak up in your doctor’s visit, you can ask the nurse, or maybe you can ask the social worker for help, even. See if there’s support groups around.

Interestingly, we’ve got a peer-to-peer network where patients can request to talk to somebody else who’s matched to them by some tumor features, and their stage, and things like that. Maybe finding somebody else who’s gone through something similar, and somebody independent to talk to instead of relying on your family.

It can also be really helpful to talk to a therapist or a psychologist about your fears, and sometimes, you want to be strong for your family, strong for your children and all, but you need a safe space with somebody that you can just express your fears and your anger if that’s what’s going on, or your depression or anxiety to while you’re trying to hold a strong face for others in your family. So, I would encourage patients to look at who is the whole team and talk to the other members of the team as well, and sometimes, they can help advocate.

Also, find somebody who might be able to come to your appointments with you, somebody who will help you advocate or remind you – “Didn’t you want to ask this question?” – or be another set of ears that you can process it with afterwards.

Katherine:                  

Dr. Gralow, we’ve covered a lot of useful information today for patients. Thank you so much for joining us.

Dr. Gralow:                 

Thank you, Katherine.

Katherine:                  

And, thank you to all of our partners. To learn more about breast cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell.

The Pro-Active MPN Patient Toolkit: Find Your Voice Resource Guide

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Download This Guide

ResourceGuide_MPN_Toolkit_F

Download This Guide

Shared Decision-Making: The Patient’s Role in Treatment Choices

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Shared-Decision Making: The Patient’s Role in Treatment Choices from Patient Empowerment Network on Vimeo.

What is the role of the patient when it comes to treatment choices? Dr. Brady Stein details how he partners with patients in decision-making for their MPN care. 

Dr. Brady Stein is a hematologist focusing on myeloproliferative neoplasms (MPNs) at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Stein, here.

Related Resources

MPN Symptom or Treatment Side Effect? Know the Difference

An Expert Shares Key Steps to Take Following an MPN Diagnosis

How Often Should You See Your MPN Doctor?

Transcript:

Katherine:                  

What do you feel is the patient’s role in the decision for therapy?

Dr. Stein:                   

I think it’s a really important role. I think historically – and, this is decades past; this era should be well over and behind us – this era of authoritative medicine is over.

You can’t just have a doctor walk in the room and say, “This is your treatment, this is what you should do, I’ll see you later.” It’s shared decision-making, and that can be troubling for some patients. But, the idea of shared decision-making is us explaining options informing the patient and making decisions together. That’s really the paradigm for modern contemporary medicine.

Some patients have a harder time with that. A lot of patients say, “Well, doc, this is too overwhelming for me. I just want you to decide for me.” And, we try not to do that. That’s a more uncomfortable type of visit for me when a patient is very deferential and says, “Whatever you say, I’ll do.” That’s not really what we want to hear. I want to know that you feel really informed, that you have a good understanding because each of these treatments – any treatment, any medication has its pros and cons.

There are no real magic bullets, and each upside has an equal downside, so you have to engage and open a dialogue, and what that means is that patients need to read and learn. That’s hard, but patients need to become proactive in their approach to their own illness, and all the patients who are listening now are doing that, trying to get more education about your relatively rare illness that’s going to give you a much better framework to help make decisions together.

Katherine:                  

Absolutely. If a patient isn’t feeling confident with their treatment plan or their care, do you recommend that they maybe consider a second opinion or seek a specialist?

Dr. Stein:                   

Of course, yeah. These are rare diseases, and patients often – I would say that in my clinic, a lot of the patients direct their own second opinions. Oftentimes, it’s coming from the patient more so than their doctor. I think the patient community is very active, the patients are networking, and they’re finding the right specialist to get to.

I think it should be really a team approach. It’s never – it’s usually not very convenient to go to a university unless you live really close, so you want to have someone close to home who can handle the routine, and then, someone who maybe is a little bit further away who can see you once a year, can help with the big decisions, can be part of the healthcare team. So, we generally recommend that you have someone near, and that maybe you have someone far who focuses only on MPNs as part of your team, and now, it’s a little different. Telemedicine is becoming a pretty ingrained part of medicine. It’s a little easier to have those visits with a physician who’s far away because of telemedicine.

Self-Advocacy: Advice for Being a Pro-Active MPN Patient

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Self-Advocacy: Advice for Being a Pro-Active MPN Patient from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients be more pro-active in their care? Dr. Brady Stein shares advice to help patients educate themselves about the disease, while finding the right balance of knowledge to prevent them from feeling overwhelmed. 

Dr. Brady Stein is a hematologist focusing on myeloproliferative neoplasms (MPNs) at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Stein, here.

Related Resources

Tools to Help You Learn More About MPN Clinical Trials

How Often Should You See Your MPN Doctor?

Which MPN Treatment is Right for You? Factors to Consider

Transcript:

Katherine:

Let’s talk about patient self-advocacy now, Dr. Stein. Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions.

Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Stein:                   

I smile a little bit because patients – I get a lot of patient emails by MyChart. That’s our medical record, and it’s a secure patient email, and a lot of patients will start their message by saying, “I’m sorry to bother you.”

And, I always say, “Why do you think that? It’s my job. Please don’t apologize for reaching out to me.” So, that’s kind of the first thing. Don’t feel like you’re bothering your doctor. There are certain things that we won’t know unless you tell us, and so, I think that’s pretty clear. When we’re in a patient room and there might be a husband and wife together, and whether it’s the husband is the patient or the wife is the patient, we might ask a question, and we might get, “No, everything is fine,” but all doctors kind of sneak over to the partner, and the partner may be saying – they’re making gestures to us. There may be nonverbal forms of communication to tell us there’s something much worse than what the patient is telling you.

So, again, “advocate” meaning you have to tell us what’s going on with you. If you’re worried about something, please don’t be stoic about it. These diseases are treated a lot based on your symptoms, and so, if you don’t tell uls about your symptoms, we won’t know.

And, in terms of advocacy, I think one of the things is that these are pretty rare diseases. In an academic center, no, this is our focus, but if you’re in a community practice where the doctor’s seeing 10-15 different things during the course of a day, it’s basically impossible to keep up with myelofibrosis, especially if you have one patient in your whole practice. I can’t do that for diseases that I see that I have only one patient. The medical literature can be overwhelming.

So, patients can quickly outpace their doctor in terms of their knowledge of these diseases, but I think it’s really important to read, to learn, and to think about the illness because you may find out things through your research that your doctor wouldn’t know are available. You may find a clinical trial, a new strategy, or a new test that they simply haven’t had the time to keep up with or learn about. So, that’s what advocacy is about. Reading is really important, but you have to find a balance. I want my patients reading, but you’ve got to find the right amount because there’s a certain amount of reading where the patients start to get overwhelmed.

All patients kind of get to this point. They take it in – like taking it in like a fire hydrant in the beginning of the disease, and it’s overwhelming, and then they start to find their balance. I think there’s a point where the reading becomes anxiety-provoking rather than ameliorating anxiety, and all patients just generally find their balance.

Empowering Ourselves Forward: Applying Skills to Our Cancer Journey

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During the pandemic, all of us have had to do some adjusting, some more than others. As cancer patients, we recognize the “new normal” everyone else is experiencing. While this can be detrimental, it can also be seen as somewhat gratifying. The non-cancer world finally understands what we’ve gone through and/or are going through on a daily basis and for the rest of our lives. Yet we’ve all learned new skills and coping mechanisms to make the best of our situation:

Virtual Appointments (Telehealth)

By now, the majority of patients have experienced at least one telehealth appointment where we see a doctor, NP, PA, etc. virtually. Whether this a completely new experience or not, there are many ways in which we can benefit from these appointments, which, hopefully, continue into the future.

What can be applied in the future:

  • Writing down a list of questions before your appointment so that nothing is missed
  • The feeling of comfort with your health care professional, especially if they weren’t in a white coat. They’re humans just like us
  • Asking questions when you don’t understand something – there is time!
  • The importance of having a caregiver as a second set of eyes and ears

Being Active

Gyms were closed (and some still are) for a long period of time, which forced us to be creative in being active.

What can be applied in the future:

  • If you watched YouTube videos or downloaded fitness apps, continue to use them to apply those movements to your routine
  • If you tried free classes offered by a local studio or gym, see what these places offer in-person
  • For motivation, grab a family member of friend to keep you accountable

Mindfulness

Perhaps the hardest part of going through the pandemic is the mental aspect, especially for cancer patients who are considered more vulnerable.

What can be applied in the future:

  • Continue using apps and YouTube videos to guide you through meditations
  • Keep a journal to write down your feelings
  • Set intentions at the start of each day
  • Remember how far you’ve come and what you can be grateful for

Family and Friends

Social distancing and wearing masks were suggestions (and in some states mandatory) to help stop the spread of the virus. This led to family and friends not being able to see one another, often for months. What’s more is the masks often concealed our expressions, making communication a little bit harder.

What can be applied in the future:

  • Spend more time with people who care about you, knowing it is possible for it to be taken away from you
  • Practice being in the moment, really focusing on what the person is saying and watching their facial expressions
  • Remember your own needs: people may now want to get together more often, but that may not be possible due to a number of factors, including your place in treatment, symptoms, and mental/physical/emotional states. Take the time you need for yourself

Barriers to Clinical Trial Participation

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What are some of the barriers to clinical trial participation? What is a virtual clinical trial? Should my doctor be speaking to me about my clinical trial options? Dana Dornsife, founder of Lazarex Cancer Foundation, speaks to the key barriers in trials and how COVID-19 has really opened the door for a lot of opportunity to engage with patients around clinical trials.

Barriers to Clinical Trial Participation

Barriers to Clinical Trial Participation from Patient Empowerment Network on Vimeo.

What is a Virtual Clinical Trial?

What is a Virtual Clinical Trial? from Patient Empowerment Network on Vimeo.

COVID and Clinical Trials

COVID and Clinical Trials: Has There Been a Shift? from Patient Empowerment Network on Vimeo.

Caregiver Support: Taking Care of YOU

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Caregiver Support: Taking Care of YOU from Patient Empowerment Network on Vimeo.

Prostate cancer caregivers support patients in many ways, but also need support for themselves. Social worker Linda Mathew details the role of caregivers and shares resources to help them maintain their own self-care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Can a Prostate Cancer Social Worker Help You?

Why You Should Speak Up About Your Prostate Cancer Care

Tools for Managing Prostate Cancer Fear and Anxiety

Transcript:

Linda Mathew:

So, caregivers have a really important role in caring for their loved ones, so whether it’s their spouse, or a sibling, or a child, they – their role 1). Is to advocate as well for the patient in terms of saying, “Hey, you know what? Let me call the doctor’s office. This side effect was on the list, but I’ve noticed that it’s ongoing, so let me reach out to the office for you if you’re not feeling well.”

They are the eyes and ears for their patient or for their loved one in terms of just saying, “Something is not right. Let me call.” And, most of our nurse practitioners or nurse office practice nurses will say to the caregiver, “You are our eyes and ears when you’re at home. When the patient is here, we’re the eyes and ears for that person to assess what’s going on.”

But also, the caregiver really – sometimes, what happens is there’s a role reversal, so they become that emotional support for the loved one, the financial support, practical support, and also the spiritual support for their loved one, and we remind them that is your – that is a huge role to play, and there’s no handbook for it, but we have resources for you, so you’re not alone in that process.

And, the one thing we really stress is here at Memorial Sloan Kettering Cancer Center, we recognize the important role of our caregivers and how important they are to the loved one that they’re caring for. So, with that resource-wise, the social work department has a program called Reach for Caregivers, and it’s a hospital-wide program that we offer support groups as well as educational workshops.

And then, in November, being Caregiver Month, we put on a lot of different programs just for our caregivers to know we recognize you, we know you need the support, so here it is. So, in terms of support groups we offer, it’s all online because we know that sometimes, the caregiver is also working outside of the home, so to help meet them where they are, we’ve offered an online support group that they can tap into during their lunch hour, or even after work.

Why You Should Speak Up About Your Prostate Cancer Care

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Why You Should Speak Up About Your Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What are the benefits of prostate cancer patients speaking up about their care? Linda Mathew discusses the impact of patients taking an active role in their care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Can a Prostate Cancer Social Worker Help You?

Tools for Managing Prostate Cancer Fear and Anxiety

Caregiver Support: Taking Care of YOU

Transcript:

Linda Mathew:

Our medical team is really open about having discussions. So, 1). Our team is not blind to knowing that our patients may want a second opinion just to validate “Hey, is this – do I have all of the information laid out in front of me?”, and we always say it’s like – it’s always good to have that second opinion just to say, “Ah, what’s been told to me is correct, and it goes in line with what I’m reading on the different websites for these places that I’m going to for possible treatment.”

I always tell our patients also that you are your best advocate, so you know what your needs are, and if it means that you need more information before you make a final decision, then do it.

So, if it means talking to other people or going for a second opinion, then go ahead and do that, but I also tell our patients if you’re scared about asking a question, if you’re not – that’s a huge issue. If you’re scared to ask a question to your medical team, that means that, in itself, says, “Hey, is this the right fit?” So, I always encourage our patients, “Our team knows that you want to ask a question. Just go ahead and ask it. You’re not going to embarrass them; you’re not going to embarrass yourself. That’s what your physician and the nurse are there for.”

I think the one thing I would want to stress is that you, the patient, knows themselves. They know what their needs are more so than anybody else, so if that means that you feel like something is missing, then speak up, let us know, and if you don’t feel saying it to the nurse at the moment when you’re in a visit, you can always reach out to the social worker, who can help direct that question back to the team or help you find a way to ask that question either via the portal or an email to the medical team.

How Can a Prostate Cancer Social Worker Help You?

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How Can a Prostate Cancer Social Worker Help You? from Patient Empowerment Network on Vimeo.

How can a prostate cancer social worker help patients and their families? Linda Mathew, a senior social worker, shares how she provides support for patients and their loved ones after diagnosis, during treatment, and beyond.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

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Caregiver Support: Taking Care of YOU

 

Transcript:

Linda Mathew:

Hi, I’m Linda Mathew, and I am a senior social worker here at MSK. I am a supervisor in the Department of Social Work, but I also have a service, and I work with the urology service, so, both medicine and surgical patients.

 And, really, it’s just – I’m here as clinical support to our patients in terms of individual counseling, couples counseling, family counseling.

So, what we really do is we provide supportive counseling to our patients. So, in terms of when we say “supportive counseling,” if patients are anxious, or have some depression around the diagnosis, or have just fears around what that – what it means to have a cancer diagnosis and the uncertainty about what that journey will look like, they are referred to me to just process that out loud in terms of questions about themselves and how – how are they going to manage a diagnosis if they’re going to be on chemotherapy or questions about how to support their family around this diagnosis if they don’t even know how to have this conversation with their family.

Most times, if it’s a couple that come in, it’s around how do I support the patient as well as the caregiver through the trajectory of this patient’s treatment. So, the patient is dealing with their own diagnosis and treatment and what all that means, and the caregiver is also having a parallel process with this where they are caring for the loved one, but also have their own fears about “How do I navigate being a support to them? I don’t know what it means to be a caregiver for somebody who’s going through medical treatment.”

So, we help slow that down for them and say, “These are the things that you need to look out for. Just – you are their extra advocate. You are that person – their eyes, their ears – when they are not able to call the doctor’s office to be able to say, ‘I can call the doctor’s office with this information. Just tell me what you want me to say.’”

But, you’re also just there as a support, so it’s a really weird kind of…reminding our patients the tools that they already have, but because they feel like they’re in a crisis, they forget what those tools are.                

Please don’t feel like you have to figure this out on your own. Your medical team is here for you, social work is here for you, we have an ancillary service – like, services available in terms of the men’s sexual health clinic integrated medicine counseling venture, all in terms of supporting our patients. So, when in doubt – and, if you don’t know who to turn to, just turn to your social worker and ask them. Say, “I need help,” and we’ll guide you through it.

Tomorrow’s Medicine Today

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From PEN-Powered Activity Guide V, beloved medical oncologist Dr. Bora Lim of The University of Texas MD Anderson Cancer Center walks us through what a clinical trial is, the phase of how drugs get approved, and how the pandemic crisis has amplified the criticality of clinical trials.

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The Power of Journaling During Cancer Treatment

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There are two ways to fight cancer, both of which are equally as important. The first is physical and the second mental. Journaling might not be able to help with the physical symptoms, but easing the mind can truly help in such situations.

By providing a safe place to store your thoughts and experiences, you will be able to find a great source of power. If you have never thought about journaling before, this might be the perfect time for you to give it a try. Here are some important reasons why this might be a very great decision.

1. Keeping track of all important moments

Some people believe that battling cancer is only filled with negative moments and experiences. While that is true to a big extent, there can be plenty of memorable moments that you might want to keep track of. The beginning of your treatments is a moment that you can write about and think about when this situation is over.

Other important moments might include family gatherings, important presents you might receive, very bad and very good days that stand out in your treatment course. Just because a day way difficult doesn’t mean it should be considered bad. At the end of this difficult journey, you will be able to look back at everything you wrote and remember the good and bad times.

2. Helping ease certain symptoms

Another great reason why journaling can truly help cancer patients during their treatments is because of symptom management. Research has actually shown that journaling can help with combating symptoms and dealing with the physical size of things.

Writing about how you feel and what you are going through can help you sleep better and feel more energetic. Getting plenty of rest will allow you to feel less nauseous, be in a better mood and battle everything with a stronger will. The more you face your symptoms, the stronger you will feel through your treatment.

3. Fighting against the stress

The stress that can be caused by such a difficult diagnosis is great and can truly affect your mood and outlook on life. Being under stress can make you feel tired, mess up your sleeping schedule and make you feel more negative about everything. This is not ideal for any situation you are in in your life and there are ways to overcome it.

Journaling can provide you with a safe space to write everything you have in your mind. During your treatments, you will possibly want to appear strong in front of your family and you might not want to share everything you feel. You can write all your thoughts in your journal and let everything out. This way you will be able to handle everything you face and feel a lot less stressed.

4. Reminding yourself of things you love

When dealing with any hardship in life, it is important to keep thinking of things that bring you joy. Journaling has helped me create a notebook full of memories, which I can go through any time I need some positivity in my life. You don’t only have to put words into it but anything and everything that makes you think of memories and people you hold dear.

In your journal you can keep stickers, receipts, drawings and cards from loved ones. Then you can write how receiving these things made you felt. When the days get difficult and you are struggling, open your journal again. Read through everything nice you have collected and it can help you remember all the reasons why this difficult process is worth it.

5. Seeing all the progress you have made

Last but not least, another important reason why journaling is so helpful during cancer treatment is that it can help keep track of your progress. There are going to be many days that will be hard and many that will be good and filled with hope. In order to be able to go through both, it is important that you keep track of everything new that happens in your journey.

The good days will help you remember that things will get better. The difficult days will allow you to live in the moment and work on staying positive. Journaling this experience can also help your family better understand what goes on in your head and how they can help. After you have successfully put this difficult period of your life behind, you can even share your story with other patients through your journal.

Battling cancer every way possible

Journaling is a creative and fun activity that can help you deal with certain symptoms and negative thoughts during your treatment. Even if you have little experience with writing, journaling gives you the chance to get creative. You don’t need any special skills in order to journal. You just need a notebook, some fun colors and a few thoughts in your head.

Through writing about your experiences, you will be able to express how you feel and let everything run its course. This treatment course might be tough, but writing everything down will help you see just how much progress you are making. This can truly help you feel stronger mentally and physically and overcome this situation like a true warrior!