Tag Archive for: emotional support

Empowered Care: A Patient’s Guide to Navigating Endometrial Cancer

Empowered Care: A Patient’s Guide to Navigating Endometrial Cancer from Patient Empowerment Network on Vimeo.

Meet Sharon, a 61-year-old endometrial cancer survivor who knows firsthand the importance of being an active participant in her healthcare. After a two-year struggle with misdiagnosed symptoms and a dismissive doctor, she took charge and found the right medical support, leading to a diagnosis of endometrial cancer.

Sharon’s journey, from diagnosis to treatment and recovery, highlights the vital role of self-advocacy and patient activation. Her story is a beacon for others, especially women of color facing similar challenges, emphasizing the power of being informed, asking questions, and seeking support.

Download Guide | Descargar Guía en Español

See More from [ACT]IVATED Endometrial Cancer

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Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Being activated is a critical part of endometrial cancer care, especially for patients like me. 

My name is Sharon, I’m 61, and my diagnosis came after a two-year struggle with unidentified symptoms. Sharing my experience is my way of reaching out, hoping it might provide guidance to others facing similar challenges.

My symptoms began with abnormal vaginal bleeding, but my periods had ended over 10 years ago. That had me worried, and my sister encouraged me to see a doctor after I told her about the bleeding. I scheduled an appointment, but my doctor dismissed my symptoms. I felt like he wasn’t really listening to me and decided to find a doctor who looks more like me and would be more likely to listen to me. I found a Black female doctor who was concerned about my symptoms, which had worsened by then. I was also feeling pelvic pain. My new doctor scheduled an endometrial biopsy, and I was diagnosed with papillary serous carcinoma shortly afterward.

With an aggressive type of cancer, my oncologist scheduled a laparoscopic hysterectomy to remove my uterus along with my ovaries, fallopian tubes, and sentinel lymph nodes. I had the surgery within a few days, which was quickly followed by radiation to help ensure any remaining cancer cells were wiped out. My recovery went smoothly, and I continue to live a full life while getting regular scans to ensure I remain cancer-free.

After my cancer experience, I want to educate other women about what I’ve learned about endometrial cancer. Black women have nearly twice the death rate from endometrial cancer compared to white women. Hispanic, Black, and Asian women are not represented in clinical trials at equal rates to white women. And Black women are also diagnosed more frequently with rare but aggressive endometrial cancer forms. Remember that you shouldn’t have to suffer with your pain, and you can advocate for yourself and ask about patient advocates to advocate on your behalf.

Here are my activation tips for patients facing an endometrial cancer diagnosis:

  1. Ask your care team questions to learn about the status of your endometrial cancer, treatment options, and what to expect during and after treatment.
  2. Join a patient support group to offer and receive emotional support.
  3. Last but not least, inquire if a clinical trial may be a potential treatment option for your endometrial cancer.

Remember, stay activated by being informed, empowered, and engaged in your cancer care.


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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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Advanced Non-Melanoma Skin Cancer | Establishing a Treatment Plan

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An Expert’s Perspective on Advanced Non-Melanoma Skin Cancer Research


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.

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

What Is the Role of a Care Partner in Bispecific Antibody Therapy? from Patient Empowerment Network on Vimeo.

How can a myeloma care partner support a bispecific antibody therapy patient? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute explains ways that care partners can offer logistical and emotional support and shares tips for staying well-informed and organized during the treatment journey.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

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How Has Bispecific Antibody Therapy Impacted Myeloma Care?

Bispecific Antibody Therapy Support | Care Team Members and Resources

Bispecific Antibody Therapy Support | Care Team Members and Resources

Transcript:

Katherine:

As I mentioned, Alexandra, this program is aimed at helping care partners understand the process and how they can support their loved ones. What do you feel is the care partner’s role?  

Alexandra:

I feel like the best way for care partners to support patients is to kind of take the time to learn about the myeloma and the therapy and try to do the best they can to just be there for not just moral and emotional support, but the other little things that they may need. Coordinating rides, if it’s a family member, asking friends for help.  

And then other things like insurance phone calls can be incredibly time-consuming and taxing. Or waiting at the pharmacy to pick up medications. Any, even little things like that, I think take a huge load off the patients who are doing this day in and day out.  

Katherine:

Yeah. Are there key questions that care partners should ask as they begin the process?  

Alexandra:

I think the best thing that patients and caregivers can do is if they have questions prior to the visit is to make a list. ‘Cause, I’m guilty of this myself, as soon as I show up at my doctor’s office, I completely forget what I wanted to say. So, making a list prior to the appointment, I think, is hugely beneficial. And then I don’t think that it’s ever a bad thing to ask for the doctor or nurse practitioner or pharmacist, whoever you’re meeting with, to see if they can repeat themselves. We’re putting a lot of information into a very short period of time.  

And to try and keep track of, again, schedule, supportive care medication, when you’re going to need to be in the hospital, how long, what your follow-up will be, taking notes during the visit or asking to hear it again is always helpful. Not even just for the caregiver, but sometimes for the patient who’s still trying to wrap their head around some of the change in therapy.  

Katherine:

Right. Yeah. That’s really good advice. As we’ve covered, it’s not always easy being a care partner. What would be your best advice for those who are caring for someone undergoing bispecific antibody treatment?  

Alexandra:

I would say it’s hard to put out how important care members are to the entire care team. Again, not just for the logistical, getting the patients to appointments, getting their medication, but really having someone the patient feels comfortable to be able to lean on. And again, they may say, “I’m so overwhelmed in these visits, and I really need some help.  

Could you ask these things?” Helping them keep track of all these medication changes and appointments and visits and any sort of even small things like grabbing them a water so that they’re staying hydrated. Those little things make such a difference to people. And I think doing those things, no matter how small they feel, really helps support the patients through these changes in therapy. 

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join from Patient Empowerment Network on Vimeo.

How might joining a support group benefit you when coping with a myeloma diagnosis? Yu Mee Song, an oncology social worker, discusses the value in peer-to-peer connection and shares tips and resources for finding a support group.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

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360 Myeloma Care | How Can a Social Worker Help?

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How to Access Myeloma Financial Resources

Transcript:

Katherine Banwell:

Yu Mee, what is the value of myeloma support groups? And how would you encourage someone to join if they’re hesitant? 

Yu Mee Song:

So, it’s – it’s – it’s not for everyone. And you may need to try more than one support group to find the one that’s a good fit for you. But it does provide a sense of belonging and the decreased feeling of isolation, like you’re going through this alone, to be in a group with others who – who kind of – who get you. And I’ve had a lot of people say, you know, it’s really , really hard to talk about this – what I’m going through – with my friends or family they just don’t get it. And it’s so good to see – and  we facilitate some groups here for newcomers to join. And as soon as they, you know, speak about something and the whole group chimes in and, yes, we know what you’re going through and give their – share their story and their experience. And it’s so inspiring and encouraging for them. 

Katherine Banwell:

Yeah. It’s incredibly valuable.  

Yu Mee Song:

They share all sorts of tips on things like side effects and – or how to – how to talk to your doctor about something if you’re uncomfortable bringing it up or, um, even asking for help about, um, you know, for counseling or more emotional support that you may be embarrassed to ask about.  

Katherine Banwell:

How would a newly diagnosed myeloma patient find out about something like a peer-group session or peer support? 

Yu Mee Song:

There may be some local. But now there are many national organizations that you can tap into. I would start, again, like, ask – speaking with your oncology social worker. But I would start with some of the national organizations like Multiple Myeloma Research Foundation, International Myeloma Foundation, The Leukemia & Lymphoma Society, platforms like this the Patient Empowerment Network, or HealthTree.  

So, if you start with any of the big myeloma organizations, they can help guide you. There are patient navigators that can kind of guide to your – provide guidance to what you’re looking for, whether it’s peer-to-peer support, support group, or other resources.  

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy from Patient Empowerment Network on Vimeo.

How can patients undergoing CAR T-cell therapy be prepared? Yu Mee Song, an oncology social worker, shares three key pieces of advice for patients and care partners getting ready for CAR T-cell therapy.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

Related Resources:

Considering CAR T-Cell Therapy for Myeloma_ Key Questions to Ask Your Doctor

Considering CAR T-Cell Therapy For Myeloma? Key Questions to Ask Your Doctor.

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join

How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Katherine Banwell:

For patients who are considering CAR T-cell therapy, what three key pieces of advice would you have for them?  

Yu Mee Song:

I think it’s really important to have someone accompany you to maybe the initial consultation.  

Or if they can’t physically be with you to have them available by phone or to listen in on a conference call because there’s so much information that’s provided. It’s – it’s a multi-step, complicated process, so it’s good to have a – another set of ears helping you to stay organized, take notes maybe, keep a calendar.  

Another thing is to plan ahead. Plan for time away from work. You may need to apply for FMLA. If you are a caregiver of young children or older parents, make arrangements for that. Especially if you live a distance from the treatment center, you may need to stay  close to the hospital for a couple of weeks after your discharge for your CAR T-cell infusion.  

Katherine Banwell:

Yeah.  

Yu Mee Song:

And then I would say another tip is to stay connected to home, so there are many online forums that you can use to – for – for your friends and family to provide support in that way and for you to share information. And maybe bring pictures or something cozy from home to remind you of home because you will be – be away for some time.  

360 Myeloma Care | How Can a Social Worker Help?

360 Myeloma Care | How Can a Social Worker Help? from Patient Empowerment Network on Vimeo.

When coping with a myeloma diagnosis, how can a social worker support you in your care? Yu Mee Song provides an overview of the role of a social worker in myeloma care and discusses the importance of speaking up about emotional issues and beyond.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

Related Resources:

How Can a Social Worker Help CAR T-Cell Therapy Care Partners

How Can A Social Worker Help CAR T-Cell Therapy Care Partners?

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join

How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Yu Mee Song:

My name is Yu Mee Song. I am, a social work program coordinator in the Multiple Myeloma Program at Mount Sinai Hospital.  

Katherine Banwell:

Excellent.  

Yu Mee Song:

Thank you for having me.  

Katherine Banwell:

Thank you for joining us. Can you tell us more about the role of a social worker as it relates to myeloma care?  

Yu Mee Song:

First of all, I feel very, very fortunate to be working in the myeloma program amongst world-renowned myeloma specialists with a team of nurse practitioners, nurses, transplant and CAR T coordinators, patient navigators.  

And our social work team is a team of five. And we can receive referrals from any of these team members at any point in a patient’s journey, from the moment of diagnosis throughout their treatment trajectory in both the inpatient and the outpatient settings for emotional needs and support to practical needs. 

Katherine Banwell:

Yu Mee, when a myeloma patient comes to see you for the first time, what are some common concerns they might be having? 

Yu Mee Song:

That really depends on the – on the patient and – and where they are in their life situation when they’re diagnosed. You know, if they’re working, they may have considerations about reducing work or not working or not being able to. A lot of practical concerns, maybe the first issue that they have to deal with such as transportation and getting to and from the cancer center now three times a week, or navigating the healthcare system for the first time in their life, and insurance or just coping with the fact that you’re now dealing with the diagnosis of myeloma and what does that mean and how are you adjusting to this? So, it really varies.  

Katherine Banwell:

If patients are facing emotional issues, why is important for them to speak about it? And – and what support is available for them? 

Yu Mee Song:

That’s – that’s a great question that I always like to stress the importance of to the patients and also the caregivers because they’re usually the ones that first notice any changes, maybe in their mood or the emotional state.  

If you’re holding things in, you’re, you know, feeling like you’re alone in this fight or your fears of what might happen, that can increase your anxiety, it might lead to depression.  

So, it’s really important to speak about it, ask your care team about it. It may be as simple as, you know, that’s a side effect of a medication that you’re on, and maybe we can reduce the dose or maybe we can tell you to take it at a different time of day. 

And that’s so helpful to know that.  

There may be help for you. You may be referred to a mental health professional, support groups, and would also improve your – your relationships within your family because obviously your emotional state it’s – it, you know, myeloma is just not impacting you but all of the loved – people around you.  

Katherine Banwell:

That leads us into the next question. Some patients don’t have a partner to help them go through this – this journey with their myeloma. So, do you have any suggestions for how myeloma patients can find support and where? 

Yu Mee Song:

I would say, first start with asking your care team or ask – speaking with an oncology social worker. Support doesn’t necessarily mean your – your partner. It can be in the form of support groups that are either in-person, there are many groups online.  

It could be a peer – one-on-one peer support. Someone who’s gone through what you’ve gone through.   

How Are Common Breast Cancer Concerns Addressed?

How Are Common Breast Cancer Concerns Addressed? from Patient Empowerment Network on Vimeo.

How can common breast cancer concerns be addressed? Expert Dr. Bhuvaneswari Ramaswamy explains issues that can arise during a patient’s breast cancer journey and discusses how they can be managed.

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:

Thriving With Breast Cancer Tools for Navigating Care and Treatment

Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?

What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?


Transcript:

Katherine:

When discussing cancer treatments with a patient, they have worries, obviously. What are some common concerns that patients typically have, and how do you counsel them?

Dr. Ramaswamy:          

I think the most common concern that they have is that their whole life has changed now. And that they’re going – this cancer is going to come back and when it comes back, they’re going to die. So, I mean, the death and the fear of recurrence is probably the most common concern. And I think the second common concern is the treatment-related toxicities that we talked about a little bit, particularly the hair loss or other things that’s going to change their lives forever after that. So, I think what is important to discuss to me, the most important thing to discuss is to clearly state to the patient there’s chances of cure. Meaning to say, your probability of being cured of this cancer, if you do this, this, and this is this high.

But there is, of course, a chance of 10 percent, 15 percent, 20 percent, 25 percent depending on the subtype of cancer they have  and the staging and their age and all of that, of this coming back. If you, even if you do the treatments, but if you don’t do the treatments, the chances of coming back is this much higher, okay?

So, I think it’s important for them to know it is still very difficult because it doesn’t really reflect what is going to happen to them. It reflects what’s going to happen to 100 people with similar cancer. So, again, that is important to explain, but what you can explain to them is if you pull out 100 out of the 100 pellets in a box if you pull out 90 pellets, they’re all going to be cured. There’s only going to be 10 pellets   that could have a recurrence. So, some ways to make them understand statistics. Not everybody comes with a good understanding of all of this. So, I think that’s important. And I think that also it’s important to talk about the treatments and how it effects – and how long it can affect them.

That they can get back and the goal of every provider is to really, the way I explain to them, you’re going to take a diversion in your life, but my goal is the diversion meets the main traffic at some point. That is the goal. And then you just go on smooth sailing. Of course, nobody knows the future, anything could happen, but we are here. And I think  the other thing that’s important, yes, we could have metastatic disease, but you are not going to, I mean,  I’m not saying nobody would, but most people with metastatic breast cancer live for several years.

And there are several treatments and new treatments  coming like I said, every year. So, having that positive approach, even if it comes back is so important for them. So, I think those are the ways; educating, answering their question, providing emotional support, and if they need counseling, addressing that. I think those are very important.

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patient Julia Olff has experienced the positive and negative aspects of online information and social media in her search for support. Watch as she shares her support journey with what she found helpful and what became toxic in her efforts to gain MPN information and emotional support.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Transcript:

Julia Olff:

So, I think social media has many advantages, especially when you have a rarer illness like myelofibrosis. I was diagnosed with myelofibrosis in 2008, and there really was not a lot of good information yet about the illness online, and I had not met anyone who had my myelofibrosis, so I really appreciated being able to go to places like Facebook in their earlier days, with my illness, to find organizations to find other people with the illness, I think learning from other people in terms of their strategies for coping with her illness, tips for dealing with side effects, and other people can answer questions about the physicians and nurses just can’t because they don’t experience it directly, how something feels sort of setting your expectations for a treatment can be really helpful, and I think that’s where social media really shines, is creating community and connecting it to others and learning from peers. The downsides though, I think, are the amount of opinion, unfounded opinion, not sourced opinion that exists that I saw on social media, and then the angry vitriol or kind of disagreement that I found really harmful to my mental health.

I’m always trying to balance how I feel with my mindset, and there are times that that’s easier to do, and times that that’s harder to do, so when I’ve been particularly unwell or just had a hospitalization, I feel like I have…I’m more vulnerable, I have less of a threshold for negativity and angry commentary, and that you can find that on social media, unfortunately, and then, of course, there’s… what I find troubling or not helpful are the opinions of other people who relay people who don’t necessarily have the depth of credible information about a treatment study, what’s right or wrong as it relates to the latest in myelofibrosis treatment, and treatment advances. So it’s helpful to hear about what it was like to have a stem cell transplant from someone with myelofibrosis, but yet I can’t rely on an individual for credible scientific medically sound information. So I think for me, I actually deleted my Facebook account in 2020, but I did keep my Twitter account because there I follow physicians’ epidemiologists, and of course, MPN organizations so that I can know about upcoming webinars or patient events, or new treatments. So that’s been really helpful.