The Benefits of Seeking a Second Opinion in Myeloma

The Benefits of Seeking a Second Opinion in Myeloma from Patient Empowerment Network on Vimeo.

Dr. Cristina Gasparetto provides advice for patients seeking a second opinion following a myeloma diagnosis. Dr. Gasparetto outlines the benefits of a second opinion and shares how she collaborates with a patient’s local doctor from afar.

Dr. Cristina Gasparetto is Professor of Medicine at Duke University Medical Center and Director of the Multiple Myeloma Program at Duke Cancer Institute. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

If patients are concerned about hurting a doctor’s feelings, I guess, with a second opinion, I think that they have to understand this is their life, and we physicians, we understand the complexity of the disease, and that it’s necessary to seek a second opinion.

And we can guide their treatment, sometimes in a different way. And I don’t think patients need to receive direct treatment in the major hospital, where they have their expert. I think it is a team effort, and I do have that collaboration with my fellow physicians over time, so I don’t directly treat the patients, here at Duke, and this is sadly. But I maintain a communications with their physician, so we can work together, and I can provide guidance, recommendations. So it’s very important, and I think a lot of the community physicians feel comfortable having that type of collaboration on this, so it’s a team effort.

And don’t be afraid to relay the expectations to the physicians. We need to know. We need to know how important a certain aspects of their life, quality of life. There are patients who want to continue to work, and bringing them twice a week in our clinic is not really helpful. Put them through a very aggressive chemotherapy regime may not be ideal for certain patients that want to stay home or be treated by their local physicians.

That’s another thing, my collaboration with the community physician is very important, because, if a patient lives 3 hours from me, I don’t expect the patient to come to my clinic every week to receive the same treatment that can be delivered locally, five minutes from their house. And that’s the reason why it’s important to maintain collaboration, a team effort between the expert and the community physician, so the treatment can be delivered when it’s more convenient.

I never exclude the physician, the referral physician, the referring physician. So, because ultimately, we want the best for the patient, and at the end of the day, they are actually, the physician start to feel more comfortable, like I do have a lot of referring physicians calling me continuously, updating me on a patient’s status, so we can work together. We can change treatment, adjusting the dosage, and so, it’s truly a collaboration.

Discussing Treatment with Your Doctor: Key Questions to Ask

Discussing Treatment with Your Doctor: Key Questions to Ask from Patient Empowerment Network on Vimeo.

Dr. Elizabeth Bowhay-Carnes discusses essential questions to ask your physician when discussing treatment during an appointment, including the need to plan and educate yourself about your options.

Dr. Elizabeth Bowhay–Carnes is Director of the Adult Non-Malignant Hematology Program and Co-Director of the Adolescent/Young Adult Oncology Program at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. More about this expert.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

The Benefits of Seeking a Second Opinion in Myeloma

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Preparing for Your Office Visit

Transcript:

Dr. Bowhay-Carnes:  

As a cancer doctor working with patients and families day-to-day, I notice that both physicians and patients are scared to talk about worst-case-scenarios.

I’m guilty of this, and I know a lot of my colleagues, we go through our visit with patients, outlining treatment plans and with the assumption that everything is going to go perfectly as planned, and there’s not going to be any surprises. I think it’s very important that patients and family, friends, sit down with their treating physician and ask them directly, “What happens if things do not go as planned?” Other ways to word this would be, “What if this particular step in treatment does not work? What are some complications that are possibilities,” and if the treatment does not work or a patient has complications, everybody needs to ask, and at least be on the lookout for, “What are the next steps? What are different options?”

It’s always important to hope for the best, plan for the best, but it’s important for a patient and family to be educated about different possibilities and what if things do not go as planned.

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

Hesitant to Join a Support Group? Encouraging Advice from an Advocate from Patient Empowerment Network on Vimeo.

Jack Aiello, diagnosed with multiple myeloma in 1995, provides his perspective on the benefits of joining a support group when faced with a serious diagnosis. He provides encouragement to those that may be hesitant to join and shares his own experience as a first-time support group attendee.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

See More From The Pro-Active Myeloma Patient Toolkit

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Should You Consider a Second Opinion? Advice From a Myeloma Advocate

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Transcript:

Jack:                           

So, I’m fortunate enough to have led our Bay Area Myeloma Support Group now for about 15 years. I originally went to the Myeloma Support Group when I was first diagnosed in 1995, and I can remember it being fairly overwhelming. People would ask me questions like, “What’s your IGG level?” or “What’s your M spike?” or – “Are you thinking about doing a transplant?” and you find out there is lots to learn with Multiple Myeloma – but it comes with time.

So, in terms of being a participant in a support group, I think the great advantage you have – two advantages really, one, you get to hear experiences of other patients, as caregivers get to hear experience of caregivers as well, an, two, if it’s a good myeloma support group, like ours, we will bring in expert speakers.

They could be doctors, they could be nurse practitioners, we’ll bring sometimes people in from pharma companies to talk about to certain subjects as it relates to myeloma. So, it’s a great learning vehicle, it’s a great sharing vehicle, and I heartily recommend support groups.

So, how do I encourage folks to join a support group? I will share my own experience there. When I was diagnosed in 1995 and I was in a hospital getting chemotherapy, my first chemotherapy at that time, I remember a social worker walking into my room and she said, “I think you really should go to the Leukemia Society Support Group that meets in the hospital tonight.”

And between you and me, I really didn’t want to go. I felt like this was gonna be some type of touchy feely type meeting and I didn’t want to be involved in that, so I told her, “I don’t have leukemia, I have myeloma, so off you go.” And she persisted, and said that the Leukemia Society [The Leukemia & Lymphoma Society] was really involved in supporting all blood cancers including myeloma. And I still fought a little bit, but ultimately, I dragged my IV pole to this meeting and listened to folks. And then, it came around to one individual, a guy named Jim, who was a myeloma patient; and it was the first time I got to see someone living and breathing with the same disease that I had, and that was really important to me.

Jim introduced me to a variety of resources, which was quite limited back in 1995, but it got me on the right track to understand more about this disease, meet more patients and ultimately doctors associated with myeloma. And I don’t think a patient can go wrong going to a myeloma group, whether you are newly diagnosed or whether you’ve been in remission for several years. Share that experience of your own with a newly diagnosed patient because remember what it was like when you were diagnosed, and how overwhelming it was to be told, one,  that you have a cancer, and  two of something called myeloma which you probably never heard of.

So, I encourage all patients to go to support group meetings, if they’re available, and you’d be surprised. There are 150 in the U.S., there are online support groups as well, there are support groups via Facebook and other Internet sites; so, I encourage you to participate as much as you can.

Should You Consider a Second Opinion? Advice from a Myeloma Advocate

Should You Consider a Second Opinion? Advice from a Myeloma Advocate from Patient Empowerment Network on Vimeo.

Jack Aiello, myeloma survivor and advocate, shares his knowledge on the importance and value of a second opinion when diagnosed with myeloma.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

The Benefits of Seeking a Second Opinion in Myeloma

Office Visit Planner

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

Transcript:

So, I’m often asked by a patient whether or not they should get a second opinion – and I’m asked in several different ways: One, they love their doctor, they don’t want to change doctors; Two, they believe that their doctor is really knowledgeable in myeloma, and they may very well be. So, what I like to let the patient know is that second opinions can be extremely valuable for a couple of reasons: One by going to a doctor who really specializes in myeloma, you might hear that that doctor agrees exactly with how your own oncologist is treating you.

And, to me, that makes me feel good. Secondly, that second-opinion doctor becomes part of your medical team; they will work with your local oncologist and offer suggestions. And I think you have the best of both worlds. You can continue to go to your oncologist and get treated, but you have that myeloma expert on your side as well. And I know that sometimes patients are worried, “Well, will it offend my local oncologist who I really like and I don’t want to hurt their feelings?” Any doctor worth their salt will really encourage you to get second opinions. They want to deal with educated patients.

If, for some reason, your doctor decided, “No, you don’t need a second opinion, it’s not worth it,” I honestly would consider changing doctors. Because I think there is so much new happening with myeloma that it’s impossible that the general oncologist or even general hematologist to keep abreast of all of the new information out there for myeloma, and I think that that second opinion would be a – offer the patient a great advantage.

Advice for Newly Diagnosed AML Patients

Advice for Newly Diagnosed AML Patients from Patient Empowerment Network on Vimeo.

Dr. Daniel Pollyea lists key advice for people recently diagnosed with AML, encouraging patients to remain optimistic and lean on family and friends for support.

Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. More about this expert.

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Transcript:

Ross:                          

What advice do you have for people when they’re first diagnosed? What are the first things they should try to do?

 

Dr. Pollyea:                 

Yeah. I mean, that reaction is totally normal and natural. I mean, many times these people are perfectly healthy or have been perfectly healthy, and this news is a complete shock.

And so, it is normal and appropriate to have some period of grieving for the healthy life that you are losing. But I would also, while giving yourself that time to grieve, first, draw on your support system, your family, your friends. Allow them to help you. Accept that assistance that they have. And to be optimistic because we are getting so much better at treating this disease.

I had mentioned before, there has been an onslaught of approvals for drugs in this area the likes of which hasn’t been seen in decades. We have new tools and weapons in our arsenal that we couldn’t have dreamed of even a few years ago.

We in our community are very excited and hopeful about the future and we hope that that will translate ultimately to patients, but being depressed or being down, being scared, all of that is normal.

All of that is expected. Anyone would feel like that. Allowing yourself to have those feelings and emotions is important, as long as it doesn’t get in the way of doing what you need to do to fight this disease.

Office Visit Planner – Myeloma

Appointments with your physician can be overwhelming. To optimize your visit, it’s best to arrive organized and prepared to take notes. Our Office Visit Planner can help. Guides for your first office visit as well as your follow-up office visit, tailored for patients and caregivers, are available below. Download, print and bring along with you to the appointment.

For Patients:

First Office Visit Planner
Follow Up Visit Planner

For Care Partners:

First Office Visit Planner
Follow Up Visit Planner

 

Office Visit Planner – Myeloma

Appointments with your physician can be overwhelming. To optimize your visit, it’s best to arrive organized and prepared to take notes. Our Office Visit Planner can help. Guides for your first office visit as well as your follow-up office visit, tailored for patients and caregivers, are available below. Download, print and bring along with you to the appointment.

For Patients:

First Office Visit Planner
Follow Up Visit Planner

For Care Partners:

First Office Visit Planner
Follow Up Visit Planner

 

How Do You Deal With Cancer Guilt?

It may come as a surprise to those who have not experienced cancer to learn that many cancer survivors suffer a form of “survivor guilt.”  Survivor guilt is most often associated with a reaction to surviving a traumatic event that others have died in, for example, survivors of combat, terrorist attacks, natural disasters, or air crashes. Survivors feel guilty that they have survived the trauma and others – such as their family, friends, and colleagues – did not.

When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis and redefined as a significant symptom of post-traumatic stress disorder (PTSD).

It seems clear to me that a diagnosis of cancer fits both the description of survivor guilt and PTSD too. Cancer is a traumatic experience and no-one who survives treatment comes out the other side unscathed.    As so many of us know, the end of treatment is not the end of dealing with cancer.  When we’re going through treatment, we are simply trying to survive and don’t really feel the full emotional impact that being diagnosed with cancer involves. It’s often only when treatment ends, that the full impact hits us.

Cancer Related Guilt is a Complex, Multi-Faceted Emotion

We may feel guilt at “surviving” when others have not.  Dee Sparacio writes of her feelings at a time when a friend’s husband died. “How could I face my friend?  How could I, NED [No Evidence of Disease] for 5 years since my recurrence face my friend. Would she look and me and think – why are you still here and my husband is gone?”

Karin Sieger also describes her experience of feeling guilty after a relative died from cancer.  “A few years after my first cancer treatment, the terminal cancer diagnosis of a relative of mine, her gradual and then very quick deterioration and death filled me with the old feeling of guilt,” she writes. “In the presence of the bereaved mother my own mother felt guilty that her child is still alive. Cancer guilt can happen to anyone affected by cancer, including relatives and friends.”

We might feel guilty that our lifestyle choices somehow contributed to a cancer diagnosis. If we have discovered we carry the BRCA1/2 gene, we may feel guilty that we could pass this gene mutation on to our children.  On her blog, Audrey Birt describes how “breast cancer guilt has stalked me. Even when I’ve thought I’d put that beast to rest, up it pops in various guises. My guilt as a parent for causing my family to suffer has been a long term one. Carrying the BRCA2 gene tipped me again into a spiral of grief and guilt but somehow staying with that and recognizing that for what it is has helped me move through it.”

Cancer Guilt May Arise During Any Stage

I have also heard from patients diagnosed with an earlier stage disease, and patients who didn’t have to go through chemotherapy that they felt less “deserving” of sympathy.  One of my blog readers wrote, “I felt like a fraud when diagnosed as in I didn’t need chemo just surgery, radiation and tamoxifen so I didn’t want to make any fuss when so many others had REAL cancer.”

Guilt may also arise from a sense that what I’m doing with my life must have greater meaning if my survival is to be justified. Another of my blog readers commented, “I feel guilty that I am not making more of my life. When I was going through treatment, I made all sorts of plans for what I would do when I finished. I was really going to make the most of my life, now that I’ve been given a second chance…but I am too tired and overwhelmed to do any of those things.”

If any of this sounds familiar to you, you are not alone.  Feeling guilty at surviving cancer is a common experience and a perfectly normal reaction to what you have gone through. When I asked the question of my breast cancer community on Twitter “how you deal with survivor guilt?” I received some great answers.   I hope you will find comfort and practical advice in the quotes below.

“Cancer guilt was related to my family. Years before my diagnosis, my dad died of cancer. So they all had to do it again with me though a different situation. I felt huge guilt about my dad for not understanding. Counseling helped a lot. I would recommend counseling for sure. Or friends who listen and allow you to air the emotion.” Julia

Survivor’s Guilt

“I do feel a certain amount of “survivor’s guilt” since my cancer was stage 0 and no chemo or radiation-just surgery. Volunteering at a cancer support center helps me and inspires me filling me with hope – witnessing patients fortitude and determination to regain their health is so inspiring.” Susan

“The survivor guilt I felt was a sense of discomfort. I was quite possibly picking up someone else’s anger, frustration and despair at their own situation. But it is their situation, not mine. And since my second diagnosis I certainly have nothing to feel guilty about or to apologize for. We have a choice not do guilt, and also do not need anyone else to do guilt for us.” Karin

“As I’ve lost friends and colleagues to breast cancer I’ve grieved for them with an added complexity. What made the difference? Why did I survive and not them? In some ways I’m embarrassed I’m still here, four diagnosis later. It’s a form of madness to feel guilty you haven’t died, to feel guilty your treatment isn’t as bad as others, to feel guilty you’ve survived more than 20 years since your first diagnosis. I know it makes no sense but it’s easy to carry guilt along with everything else. But it serves no purpose and is fueled by a media that feeds a view of the cancer experience which is unrealistic, overly simplistic and laden with judgment.” Audrey

Overcoming Cancer Guilt

In his book, Travelling Light (The Columba Press) Daniel J. O’Leary quotes Bearwatcher, an Apache medicine man. “In the Apache language there is no word for ‘guilt.’ Our lives are like diamonds. When we are born we are pure and uncut. Each thing that happens to us in our lives teaches us how to reflect the light in the world; each experience gives us a new cut, a new facet in our diamond. How brilliantly do those diamonds sparkle whose facets are many, to whom life has given many cuts.”

So when you experience those feelings of guilt, contemplate the brilliant new facet in your diamond and reflect on the way that you can reflect that light in the world. You will best honor the memory of those friends who have died, by looking to the future and pledging to make the best life you can for yourself and those you care about. Life is a precious gift and you have been given the opportunity to recommit yourself to it. Now is your time to live; so armed with the lessons you have learned from your cancer experience, look to the future and shine with the brilliance of your diamond light.

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Resource Links:

 Dee Sparacio

Audrey Birt

Karin Sieger

Is there a hierarchy among cancer survivors?

Twitter Comments:

Julia

Susan

Melissa Adams VanHouten

Melissa Adams VanHouten is a former university political science instructor and corporate trainer who holds a B.S. in Political Science from St. Joseph’s College and an M.A. in Political Science from Indiana State University. After being diagnosed with gastroparesis in February of 2014, she became a passionate advocate for those in her community who feel voiceless and ignored.

Currently, as the Association of Gastrointestinal Motility Disorders (AGMD) Patient Education and Advocacy Specialist, International Foundation for Gastrointestinal Disorders (IFFGD) Patient Advisory Committee member, co-author of the book, “Real Life Diaries: Living with Gastroparesis,” and creator and administrator of several online patient support and advocacy groups, she spends her days advancing the cause of those who struggle with the sometimes devastating and life-altering effects of gastroparesis and other chronic illnesses. It is her fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, cures.

Cynthia Chmielewski

Cynthia attended Rutgers University graduating with degrees in Psychology and Education.  Upon graduation she secured her first teaching position and immediately fell in love with her chosen profession. Cynthia continued teaching for 28 years.

Now retired, Cynthia, a myeloma survivor, is using her passion for education to teach a new group of “students” – myeloma patients and their caregivers. She is on the advisory boards of the Patient Empowerment Network, the Myeloma Crowd Research Initiative and the Philadelphia Multiple Myeloma Networking Group. Using social media to educate is her passion. Cynthia educates and advocates by tweeting at @MyelomaTeacher and sharing myeloma resources, educational opportunities and clinical trial information on her MyelomaTeacher Facebook page. Ms. Chmielewski is the co-founder of the #MMSM TweetChat and is also a regular panelist on the CureTalks Podcast. Cynthia was an invited panelist and presented posters on using social media in hematology at the annual meetings of  the American Society of Hematology (ASH), the American Association for Cancer Research (AACR) and the European Bone Marrow Transplant (EBMT).

More recently Cynthia joined the Patient Engagement team at Patient Power. Additionally, she consults on educational projects sponsored by the Myeloma Crowd.  She enjoys serving as a voting member on the IRB at the University of Pennsylvania, the patient advocate on the Myeloma Steering Committee of the ACCRU clinical trial network and a peer reviewer for the National Cancer Institute (NCI).

Marie Ennis-O’Connor

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

Christian Gardner

Christian has been working in digital platform build and online communications roles for the past 10 years, across a range of industries and companies, but with a major focus on healthcare. His life and work has given him a truly global perspective – starting working life in London and delivering projects throughout Europe, the US and the Middle East and now in New Zealand having worked with a range of companies in Australia.
In the early part of his career Christian worked as part of a global Research and Development communications team at AstraZeneca and quickly realized the challenges, but more importantly rewards of being able to communicate complex science digitally. Since then he’s worked for both content and creative agencies to help a range of healthcare organizations tell their stories – whether it’s to scientists, the media or people living with diseases.
Christian – now based in New Zealand – is currently working at a digital agency in Auckland called Heyday. The agency services a whole host of industries beyond just healthcare, which has been a great reminder of exactly what’s possible digitally, without some of the regulatory and compliance hurdles healthcare can throw at us! This step outside of working solely in the healthcare industry has given Christian a fresh perspective on digital best practice and hopes to bring some of that thinking back into the healthcare industry in future.

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Christina Lizaso

Christina Lizaso, known on Twitter as @btrfly12, is a community engagement professional who utilizes her background in nonprofit and volunteer management to empower patients and strengthen the patient voice. Her passion for this is driven by her own strong family history of cancer. Christina is co-founder and co-moderator of the #gyncsm community for gynecologic cancer. Christina is also a digital ambassador for the National Society of Genetic Counselors, helping raise awareness about the important role of genetic counselors. Christina serves on the Patient Advisory Board for Clara Health, a clinical trials company striving to be the simplest, fastest, most patient-friendly way to connect patients to the newest treatment options. Christina’s professional services include tailoring health information for specific audiences on Twitter, Facebook and other digital media and bringing people together around carefully framed topics to foster enlightening discussion.