Where Strangers Become Family: Learning and Connecting at an LBBC Conference

Attending a conference is a great way for to get the unique medical information you seek for specific types of breast cancer, while connecting with people from across the country who share your concerns. Young Advocate Jennifer Stringer Staggs shares her experiencing attend our 2014 fall conference. It’s not too late to attend this year’s conference; walk-ups are welcomed onsite!

Jennifer Stringer Staggs.jpgWhen I was diagnosed with breast cancer at 29 years old, I did a lot of internet investigating to find out as much as I could about breast cancer in young women. I came across a website called LBBC.ORG, which brought me to know and love Living Beyond Breast Cancer.

I found so much information at my fingertips and almost every question I had was answered. I started hitting road blocks when I found myself wanting to know more about the type of breast cancer I was diagnosed with – triple-negative breast cancer. At the time, triple-negative breast cancer did not have a lot of new info or research and I felt as if I was at a dead end.

I then started advertisements for LBBC’s annual fall conference on the organization’s website and Facebook page, and I thought it sounded really informative and possibly a great way for me to meet other survivors. One thing that stuck out the most to me was the fact that they had certain panels for people diagnosed with triple-negative disease. LBBC’s Young Women’s Initiative also offered a program called Young Advocates, which was taking place at the conference. Living in a smaller town there were not many other young women that were facing breast cancer with me. I felt so alone and it seemed as if I was going through it all alone. I did not want anyone else in my town to ever feel alone, and since there was not a strong young voice I wanted to be that voice.

When I found out it was in Philadelphia, I almost gave up as quickly as I found it; I live in Oregon, and traveling wouldn’t be easy. That’s when I found out there were travel grants and you could room with fellow participants for the duration of the conference. So I decided to go out on a limb and apply to be a Young Advocate so that I could make a difference.

I was still really nervous to travel across country alone, during my chemotherapy to a conference where I knew nobody. That’s when I met another young woman via Facebook who had breast cancer, and was only a town away. I convinced her to come with me and apply to be a Young Advocate, so we could go at cancer head first together.

Jennifer Stringer Staggs

Before the conference, I never went anywhere without wearing either a hat or wig. I was self conscious about being bald and people seeing me and judging me. I did not want to feel that way at the LBBC conference, so I went out and got a henna tattoo on my head so at the conference I could be brave and give much-needed smiles. It felt so freeing being able to walk about and not feel judged; instead many women there asked to hug me or told me I looked beautiful. My first day there, I teared up so many times just from meeting and talking with all of the nice and accepting people. Nobody cared what you looked like or about your background or demographics. Everyone was a big family and just supported each other, and strangers quickly became family.

The most powerful thing to happen to me at the conference was during the lunch break. A speaker asked attendees to stand up by how many years out they were from diagnosis. Seeing that in person moved me beyond what I could have ever expected and gave me so much hope. There were women like me who stood up because they were still going through treatment, and then there were women who were 20+ years from diagnosis, who not only stood up, but they stood up shouting and dancing with joy. So many happy tears happened at that moment.

A few tips I have for any newcomers to the conference:

  • Ask lots of questions and take notes
  • If breakout session speakers have slides available, take them so you can look back on the info
  • Go up to every exhibit booth, and don’t be afraid to reach out and sign up for some goodies
  • Go up to strangers and turn them into family; you never know when someone may be in need of a hug
  • Go out of your comfort zone – the conference is a place where you won’t be judged
  • Bring a camera  or use your camera phone and take lots and lots of pictures so whenever you feel down, you can look back to your family with Living Beyond Breast Cancer
  • Keep in touch with the people you meet at the conference and bring tissue!

 

Walk-ups are welcomed onsite for the 2016 Living Beyond Breast Cancer Conference: Individual Treatments, Shared Experiences! Learn more about the event at http://lbbc.org/2016conference

Raising Awareness of Clinical Trial Options for African-American Women

Averl Anderson, 62, is a minister with Greater Emmanuel Temple in Buffalo, NY, and a chaplain at Roswell Park Cancer Institute. She was diagnosed with stage III triple-negative breast cancer in 2009. Averl did a Q&A for Breast Cancer Clinical Trials Matter to You, to discuss advocacy for clinical trial participation among African-American women, her experience in a trial for bevacizumab (Avastin), and more. 

Averl_for blogQ: How did you learn about the clinical trial you joined?

Averl: My oncologist mentioned it in 2010 as a treatment option for me in combination with chemotherapy.

It was a double-blind study, but I eventually learned I was in the treatment group receiving Avastin.

Q: What was it like being in the trial?

Averl: I was in the trial for about five months. The first two months was every two weeks, and for the last four months it was once a week for three months.

I experienced side effects like neuropathy, or tingling in my feet, hair loss and changes in my finger nails. Thankfully, I didn’t experience some of the severe side effects like vomiting and diarrhea.

The cancer had responded well to the treatment. The FDA withdrew approval for Avastin in November 2011, saying it was not effective. I thought that was unfortunate because I’m still free of cancer, so I feel the treatment was at least effective for me.

Q: What were some of the concerns you had before participating in the study?

Averl: I was little apprehensive when my doctor first brought up because my mind immediately went to the Tuskegee experiment and exploitative research.I also worried about experiencing extreme side effects.

My doctor had a clinical trial nurse at the Roswell Park Cancer Institute come talk to me and answer the questions I had. She gave me information, I took home and went over it with my family, and later felt reassured enough to agree to join the trial.

Q: What do you think is the biggest hurdle to clinical trials participation?

Averl: Mistrust. Culturally, some people have experiences that make them extra skeptical about clinical trials.

Broadly speaking, if you look at the television commercials for certain medicines, they list all of these severe side effects. For some people, if that’s what you experience with FDA-approved medicine, what will happen when you take a drug that’s still being studied?

Q: How can breast cancer advocates help build trust about trials?

Averl: Peer advocates. It’s very effective to have someone who’s been through a clinical trial stand in front of you and tell you all about it.

I speak to a lot of focus groups and church groups about my experience. I worked with the Pharmaceutical Research and Manufacturers of America (PhRMA) and the National Minority Quality Forum as a spokesperson for the I’m In campaign. I’d often speak to minority women about clinical trials because they are the ones that don’t always participate. Continue reading

Why I Became The Choosy Chick

In anticipation of our August 12 webinar on environmental health, Health Educator Margot White blogs about why she founded The Choosy Chick.

I have always believed in the benefit of leading a healthy lifestyle, but becoming a mom inspired me to turn it up a notch.  Like most parents, I wanted to provide my children with a healthy foundation and protect them from chemicals that did not belong in their bodies.  After my first son was born I began to realize I was only scratching the surface.  I had a lot to learn about food additives, dyes, artificial flavors and sweeteners, preservatives and chemicals with unpronounceable names.   The more I learned, the more I distrusted the well-known brands that were a major part of our diet.  My kids even picked up on my new habit.  Imagine my embarrassment when my 6 year old blurted out at a birthday party, “Hey Mom, there’s high fructose corn syrup in these fruit snacks!”

By the time my second and third sons came along, I began to learn about the chemicals not just in foods, but in cleaning and personal care products. I became more suspicious about toxins in skincare products when my son became ill during the application of one of those Halloween face painting kits.  His throat started to burn and he vomited white foam.  When I looked at the back of the product label, I noticed the warning to avoid using certain colors near the eyes or mouth.  But wait – this was a FACIAL makeup kit!  How could it possibly create this kind of reaction?mwhiteheadshot2

All along I was experiencing some unexplained rashes, and developed Raynaud’s syndrome.  My doctor started to watch me closely for Lupus, among other autoimmune diseases.  During that same period several close friends and family members were diagnosed with cancer.  I became concerned for the health of my family and myself. I became a mom on a mission committed to reducing our exposure to toxins in foods and household products. I started to investigate the ingredients in diaper creams, lotions, and baby shampoo and again, found good reason to distrust the brands I once thought were safe. I had already discovered that my own makeup and personal care products were loaded with toxic chemicals that are linked to a variety of serious health concerns. Continue reading

Connection, Information and Inspiration: Wellness Weekend

Wellness Weekend brings together two of our most popular programs, our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experienceswith our signature fundraising eventYoga on the StepsRead this letter from Catherine L. Ormerod, LBBC’s vice president of programs and partnerships, to learn about this event in Denver from September 18 – September 20, 2015.

Photo credit: Rich Grant and VISIT DENVER

Photo credit: Rich Grant and VISIT DENVER

Welcome to Wellness Weekend—three days of connection, information and inspiration from Living Beyond Breast Cancer.

Today, a breast cancer diagnosis requires more than just having the facts. To make the best decisions for your treatment and your life, you want information that helps you understand your options and the possible side effects. Getting good care means knowing where to find help and support, for yourself and for those who love you. And it means caring for yourself as a whole person—understanding how cancer impacts you physically, emotionally and spiritually.

Catherine-Ormerod 1At Wellness Weekend, we connect you with people across the country who share your concerns. Our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, offers tailored information via three tracks:

  • Triple-negative breast cancer, presented in partnership with Triple Negative Breast Cancer Foundation
  • Hormone receptor-positive or HER2-positive breast cancer
  • Metastatic breast cancer, with information on all subtypes

Select a morning plenary and follow the tracked workshops throughout the day. Or mix and match to make the day your own. You’ll also find workshops specific to young women, those coping with inflammatory breast cancer, and caregivers.

Take advantage of opportunities to connect, including our opening reception Friday evening and optional offsite activities Saturday night.

Denver welcomes its 3rd "Yoga on the Steps" fundraiser at Cheesman park. The event is Living Beyond Breast Cancer's signature fundraiser and engages and connects participants at a large, outdoor yoga class suitable for all ages and skill. A Healthy Living Expo is also a keystone to the day.  "Yoga on the Steps" educates the community about healthy living and quality-of-life-issues regarding breast cancer while creating awareness of and raising funds for LBBCÕs education and support programs, which are always provided for little or no cost. ©2014 Rob Clement | RCVisual

©2014 Rob Clement | RCVisual

Cap off your weekend with Yoga on the Steps: Denver. On Sunday morning, we’ll gather outdoors at Cheesman Park, where the Denver community will join us in an all-levels yoga class and Healthy Living Expo to raise awareness of LBBC—and to celebrate our collective strength.

It will be a weekend of connection, information and inspiration. We hope you can join us.

Warmly,

Cathy's signature

Catherine L. Ormerod, MSS, MLSP

Vice President, Programs and Partnerships
Living Beyond Breast Cancer

Cancer and Sex

Don S. Dizon, MD, FACP, regularly blogs on ASCO Connection, where this post originally appeared. Learn more about sex and intimacy after a breast cancer diagnosis during our Twitter Chat, Tweets from the Sheets, on Wednesday, June 24.

dizon_don 2012As an oncologist who also runs a sexual health clinic for women treated (or under treatment), I am discovering that my perspective on both issues of cancer treatment (and survival) and life after cancer (and quality of life) is somewhat unique. I am conscious of how difficult it is to bring up cancer therapy and survivorship (let alone sexual health) within the same discussion, yet I have gained a heightened sensitivity of the importance of looking beyond treatment even while we are discussing what to do now. I have benefitted greatly from colleagues in the field of sexual health, such as Michael Krychman, at UC Irvine, and Anne Katz, in Canada, both of whom I have been privileged enough to count as colleagues, co-authors, and contemporaries.

I am even more fortunate that one of my friends here in Boston also shares my interest in women’s health. Sandy Falk is a gynecologist and sees cancer survivors for women’s health issues at the Dana Farber Cancer Institute. In our practices, we both see the adverse effects of therapy that patients have to cope with. However, far from the arthralgias of aromatase inhibitors and neuropathy of some of our chemotherapeutic agents (two symptoms which we as oncologists are comfortable discussing), sexual health is often compromised.

There are common complaints encountered by those of us who cover sexual health. They include:

  • “I’m done with treatment, but now I can’t have sex. It is too painful and my sexual desire is completely gone.”
  • “Why didn’t my oncologist warn me about this? Maybe if I had known my partner and I could have worked on this early on. But now, so much time has passed now and my partner and I have lost patience.”
  • “I’m not sure how to go on with my relationship.”

Those may be extreme examples, and I hope for most oncologists that they are. However, what I do know is that these perceptions do exist—inside and outside of medicine. When the paper on AI treatment was picked up by several sites, I had read some comments posted and was disheartened to see that some of the thoughts above were reflected: “A woman should be lucky to be alive,” one stated; another said, “You can’t have sex if you’re dead.”

I believe most oncologists do not discuss sexual health with their patients and as an oncologist, I understand why. Most clinicians reading this might think (perhaps unconsciously) that the patient is “lucky to be alive.” And of course, she is. And we also know that she probably wouldn’t have had the ability to hear detailed information about sexual health during the diagnosis and treatment planning process—there were much bigger priorities then. Continue reading

Reflecting on ASCO 2015

Living Beyond Breast Cancer’s Erin Rowley shares her experience attending this year’s annual meeting of the American Society of Clinical Oncology in Chicago, Illinois. Download the audio recording and presentation from our June 4 ASCO webinar to learn about updates from the 2015 meeting.

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The American Society of Clinical Oncology (ASCO) has existed since 1964, and has held an annual conference for almost as long. ASCO created the Journal of Clinical Oncology, a publication in which many important breast cancer studies appear, and cancer breakthroughs are often announced at ASCO’s annual meeting. For years, representatives from Living Beyond Breast Cancer have attended this conference in order to hear about the latest in breast cancer research, and to pass that information on to you, to help you navigate life after a breast cancer diagnosis.

As LBBC’s writer and content coordinator, I went to this year’s conference, which took place May 29 to June 2, in Chicago. It was my first time at the event and it was an exciting opportunity to join the more than 30,000 people from all over the world who were in attendance. Some, like me, were there as patient advocates, representing people with cancer. But the vast majority of people there were cancer doctors. They came to present their own research and to learn from their colleagues.

Over the course of 5 days, thousands of studies, hundreds of which related to breast cancer, were presented; and dozens of educational sessions, in which doctors discussed what recent findings mean for their day-to-day practices, were held.

Moving between sessions about surgery, different breast cancer types, quality of life and other topics required quick navigating of McCormick Place, the largest convention center in North America. I’m certain I walked a few miles as I zigzagged through the crowds! In situations where I couldn’t be in two equally-interesting sounding sessions at once, ASCO’s use of technology and social media were really helpful. Many sessions were filmed, and the Twitter hashtag #ASCO15 helped me see what aspects of the conference people were most excited about. Even though ASCO has been over for about a week, people are STILL using the hashtag to continue the conversation. (Check it out for yourself!) Continue reading

Offering Support for the Newly Diagnosed: Tips for People Who’ve Been There

New LBBC blogger Joanne Hampton posts tips for offering the best possible peer support for people newly diagnosed with breast cancer.

joanne hampton photoMy journey has consisted of nine surgeries, chemotherapy, radiation, and a positive diagnosis of BRCA1. I am an 11 year survivor. I have spoken at numerous events, sat on different committees, ran many successful fundraisers, and yet, I still feel awkward talking to someone who is newly diagnosed. They look up at me like I am about to reveal some great secret advice to get them through this. Tears begin to form in their eyes they ask me questions like “What now?”

Even though I, too, am a breast cancer survivor and have traveled a similar path, I don’t always know what to say. Because of this I was inspired to do some research for myself and other breast cancer survivors who want to offer that glimmer of light at the end of the tunnel for someone recently diagnosed.

I want to focus on some tips to think about when you are asked to speak to someone who is diagnosed with cancer. So that you can make it easier by giving them strength, make a difference by inspiring, and help by holding a hand.

Tip #1: Each person’s reaction is different.

This is very important. I can’t stress this enough. The most miniscule thing to one could be earth shattering to another. To me, losing my hair was the least of my worries. But, I have met a lot of women who were devastated and felt they had lost their dignity along with their hair. A person can’t always help or control how they feel. There’s no rhyme or reason, there’s no right or wrong but, they are real feelings and people will react differently, based on those feelings. Not all wounds are so obvious. Walk gently in her life.

Tip #2: It is not all about you and your journey or the journeys of others.

Be sensitive to her journey. Make sure you do not compare. Try and avoid saying things such as, “I know how you feel,” or “I know how hard it can be”. She needs to be herself and take her own journey. The secret is changing saying “I know” to “I understand”… because to an extent you do. As for comparing, most of the time people don’t even know they’re doing it. We don’t want her to feel bad if she isn’t living up to the expectation she sets for herself based on your experience. Continue reading