Volunteer Spotlight Q&A: Caryn Kaplan

CarynPhotoWe’re honoring National Volunteer Week 2015 with a Q&A with Caryn Kaplan, who’s volunteered for LBBC for 17 years. Digital Media Specialist Josh Fernandez interviewed Caryn about her interest in LBBC, what she loves most about volunteering and why she thinks others should volunteer.

 

Josh: You’re a longtime volunteer for LBBC. Why do you choose to donate your time to us?

Caryn: When I was first diagnosed 17 years ago, I used to crawl into my bedroom after chemotherapy and go online to look for any type of information that could help. I stumbled upon LBBC. The resources, even back in their infancy, were the best I had found. I knew it was a trusted source of information, and I knew this was the organization for me.

I started attending community meetings first and then I just felt a connection to the organization and the people who work there. I knew the fit was there. I knew it very the very beginning. Their arms were always outstretched and they always had an answer to the questions I had. Volunteering seemed like the least I could do.

Josh: What are some of your favorite activities to do as an LBBC volunteer?

Caryn: I do many activities for LBBC. Each one has its own special meaning to me. I enjoy coming into the office and helping during office hours. I enjoy attending events and representing LBBC in speaking engagements at places like Fox Chase Cancer Center. I spoke for the Combined Federal Campaign (CFC) for a few years.

I love doing the Breast Cancer Helpline. I love being an empathetic listener for the callers and giving them resources. Some need to really get ‘it’ out of their system. Others just need resources and a place to turn. I just did the Hear My Voice : Metastatic Breast Cancer Outreach Volunteer Program, which is going to be a great program – it’s already in action as we speak. It’s a wonderful way to spread the word about the need for research and creating more public awareness of what metastatic breast cancer means. I like any type of advocacy work I can do, especially if it’s for LBBC. Continue reading

Embracing Community and Participating in Yoga on the Steps

FullSizeRenderMarisa Gefen, MD is a 35-year-old physician and mother who has now added “patient” to her resume. She was diagnosed last April with ER/PR-positive breast cancer. Marisa reflects on how this journey led her to Living Beyond Breast Cancer and Yoga on the Steps.

After my shocking diagnosis in April 2014, I immediately went into survival mode. I hyper-fixated on getting through the current phase of treatment and onto the next phase. It was a whirlwind of getting a port, quickly followed by starting chemo, managing chemo side effects, finishing chemo, then on to a 9-hour surgery comprised of a double mastectomy, sentinel node biopsy, and free flap breast reconstruction. Soon, I was home recovering from this massive surgery and then stumbling into radiation daily for 5 weeks.

Then, I woke up one morning in January and suddenly realized that active treatment was all over. Now what? In this frightening journey, I was missing a sense of community of others with similar experiences, both past and present. The endless support from my husband, family, and friends, did not fill the entire void.

I heard about Living Beyond Breast Cancer right after my diagnosis. When I happened to be looking for local office space, my tour of commercial real estate ironically took me right through LBBC headquarters, which I toured. The office was warm and full of young, vibrant people. I wasn’t ready at that moment to reach out.

I was reintroduced to LBBC in December, when I tried frantically to interpret the results of the Suppression of Ovarian Function Trial (SOFT). This major trial will likely change the standard of care for me and other women under age 35 with ER-positive breast cancer, by recommending induction of early menopause (as if we haven’t been through enough) and possibly switching from tamoxifen to an aromatase inhibitor. Continue reading

Word Associations: Breaking the Bonds between “Palliative Care” and “Hospice”

Don S. Dizon, MD, FACP, regularly blogs on ASCO Connection, where this post originally appeared. Meet Dr. Dizon at our Ninth Annual Conference for Women Living with Metastatic Breast Cancer in Philadelphia, PA.

dizon_don 2012Mom. Dad.

Happy. Sad.

Friend. Trust.

I remember playing this game. A friend would say one thing, and then I would say the first thing that came to my mind. For some reason, it would pass the time. I remember how some words would spark an emotion or a memory. Sometimes happy, sometimes not so happy. But, playing that game was one of the first ways I learned the power of words.

I started thinking about this one day when a group of colleagues were discussing palliative care. Despite how we all believed in the benefits of palliative care, we each recalled experiences where the mere mention of those words to a patient caused them to become defensive, even angry.

“I remember taking care of an older woman,” someone had said. “She was on her fourth line of treatment for metastatic breast cancer, and her scan had showed some progression. She had been having issues with pain as well, and we had to adjust her medications several times in the past month. I mentioned that she would benefit from palliative care, and I was surprised about how upset this made her. She accused me of giving up on her, telling her she was dying. It was really upsetting.”

Hearing that story made me more convinced that the associations of palliative care have not evolved, even as the evidence that palliative care benefits patients far before they are deemed terminal has accumulated. It made me think, perhaps the way to increase utilization of this service is to sever the “palliative care means hospice” connection. Yet, how to do that? Continue reading

Addressing a Gap Identified in Our Needs Assessment of Young Women: Discussing Fertility After Breast Cancer

Whether treatment will affect their ability to have children in the future is one of the most common worries among young women who are diagnosed with breast cancer. LBBC’s Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative and YWI Program Coordinator Ingrid Mapanao blog about this gap, in anticipation of an upcoming healthcare provider webinar on fertility and breast cancer. 

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LBBC’s Arin Ahlum Hanson, manager of the Young Women’s Initiative (left) and YWI Program Coordinator Ingrid Mapanao (right).

The National Comprehensive Cancer Network guidelines recommend all premenopausal women diagnosed with breast cancer be informed about the potential impacts of treatment on their fertility and asked if they would like to have future pregnancies. LBBC’s national needs assessment of over 1,500 young women affected by breast cancer found that only half of the young women surveyed reported discussing fertility issues with their healthcare providers. Of those women who did discuss fertility impacts with their providers, the majority of those women initiated this important discussion with their healthcare providers rather than having their healthcare providers bring up the subject.

LBBC is working to close this communication gap by educating healthcare providers through an upcoming webinar. Healthcare providers participating in this webinar, Fertility and Breast Cancer: Educational Opportunities and Preservation Options , will learn about fertility preservation options available for young women and how breast cancer treatments impact fertility. The webinar will be held on Wednesday, March 18 from noon-1pm ET and the guest presenter will be Kristin N. Smith, a fertility preservation patient navigator at the Comprehensive Cancer Center of Northwestern University in Chicago.

Free CEUs will be given to the first 150 nurses and 150 social workers who register!

Our hope is that many healthcare providers join our Young Women’s Initiative’s commitment to strengthen and expand programs for young women affected by breast cancer. Healthcare providers can do this by participating in the webinar. If you’re a healthcare provider, register now to learn the roles you can take to educate your young patients about their fertility options.

Everyone Deserves Quality Health Care: On Writing “Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person”

Josh_blog photoWriter and Web Content Coordinator Josh Fernandez writes about authoring Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person, and why creating this resource was important to him and LBBC.

I came out to my primary care doctor when I was 16 years old.

I had come out to a few close friends in the weeks before, and they didn’t handle it well. After that, my anxiety gradually increased. I had been meaning to make a doctor’s appointment for other reasons, so this anxiety pushed me to schedule a visit.

There were words before and after “I’m gay,” but I couldn’t help but focus on those two. After I said them, my stomach and chest felt as if they twisted into knots. My doctor’s face didn’t change; she maintained her relaxed facial expression and asked me questions about the anxiety I had. We then talked about what was going on. Before the end of the appointment, she told me not to hesitate to contact her if I had other questions or concerns, or if I needed someone to talk to.

My doctor was affirming, which was something I really needed at that time. That’s not always the case. Among the different barriers and disparities lesbian, gay, bisexual and transgender people face when seeking health care, getting quality care that’s sensitive is a major one. Forms in the doctor’s office or a hospital sometimes offer very limited ways to describe your relationship or gender identity. Providers may make assumptions. Biases may directly or indirectly impact a provider’s approach to care.

This is why it was important to me to write Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person for Living Beyond Breast Cancer. There are advocacy organizations and other institutions working hard to educate, inform and train healthcare professionals on adequate care for LGBT people. Things are improving – just look at the Healthcare Equality Index – but there is still much work to be done. LGBT people with breast cancer cannot afford to wait for this work to be finished before receiving care. I wanted to create a resource that could empower and help LGBT people while that systemic work continues. I also wanted this publication and related online content to include personal stories of LGBT people affected by breast cancer, so that readers know they’re not alone. Continue reading

Growing Initiatives for Metastatic Disease and LGB People Diagnosed with Breast Cancer

Catherine-Ormerod 1Catherine L. Ormerod, MSS, MLSP, LBBC’s Vice President of Programs and Partnerships, blogs about new resources and programs we developed for people living with metastatic breast cancer and LGB people affected by the disease.

This month, LBBC introduces two new initiatives to provide our brand of trusted information and support to two underserved populations in the breast cancer community: people living with metastatic breast cancer (MBC) and lesbian, gay and bisexual people diagnosed with breast cancer.

LBBC’s Hear My Voice Outreach Program will train 25 individuals from around the country and who are living with metastatic disease to connect others with resources, information and support for coping with stage IV breast cancer. Original LBBC research, confirmed by subsequent surveys, revealed that those living with MBC feel isolated, misunderstood and often unaware of programs and resources tailored to their experience. Other studies show that participation in peer outreach programs improves emotional health and well-being.

I see the power of connection at every one of LBBC’s conferences and thus I am very excited to begin the Hear My Voice Outreach Program at LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in April. We have already received many applications for the first Hear My Voice, so we know we have tapped into a large, unmet need.

Our second initiative centers on original content we developed to assist lesbian, gay and bisexual people living with breast cancer get the quality of care they need and deserve. For many, coming out to members of their healthcare team can be difficult or scary. The guide, which is the first of its kind for people with breast cancer, provides information, support and resources to help make having these conversations easier. Continue reading

My Fear of Breast Cancer Recurrence (A Poem)

EliseBourneBusbyThe fear of recurrence, or fear of cancer coming back, is one of the most common worries among people affected by breast cancer. Elise Bourne-Busby, EdD, wrote this poem about her own fear of recurrence in anticipation of our free January webinar on this topic.

The fear that cancer may invade my body again
Keeps recurring daily in my brain,
I must change my habits, if I want to stay healthy
Good health is not cheap, I must re-assign my money,
Good nutrition first, eat only the best
Fresh fruits and vegetables, get plenty of rest,
No candy and soda, drink water every day
I am what I eat, and for this I must pay,
My immune system is the core of my being
My body is designed to do the Self–Healing,
I must treat my body kindly, I must help the process
Exercise a little more, eat a little less,
My doctors will treat me, but I must keep the appointment
Get frequent health checks, even though inconvenient,
I must not be scared to ask my doctors any question
They are the experts, I pay for this information,
I must not be afraid to say I don’t understand
I must always, always get a second opinion,
I need my health, so I must remember
To ask my doctors for my health numbers,
Show me my glucose, cholesterol and blood pressure
And when I go home I’ll take my waist measure,
My good health is not only important, it’s mandatory
I must fire my doctors if necessary,
But I am not perfect, I do not always rest
Sometimes I eat junk food, and make my life a mess,
So I have to stay strong, and talk to myself daily
Nurture the core of my being, to balance spirit, mind and body,
I must invest in good health, fear is not an option
I must take care of me, that’s the only solution.

Elise Bourne-Busby, EdD, is a 15-year breast cancer survivor, and is a Reach to Recovery volunteer for the American Cancer Society. She is one of the founding members and chairperson of the group More Than Friends, which gives Sharing and Caring baskets to cancer patients undergoing treatment, provides transportation, makes home and hospital visits and assists the uninsured and under-insured with information to solve medication needs and financial issues.

The fear of recurrence doesn’t have to run your life. Join us on Thursday, January 29, at noon ET, for our fear of reccurence webinar, to learn about practical tools to help you manage your fears.