Posts Tagged ‘Learning from others’

It’s About You: Laura Ross’ Story

August 15, 2014

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LBBC would like to introduce our newest guest blogger Laura Ross. Today she shares her breast cancer journey and how she became familiar with LBBC’s programs and services, specifically our annual Fall conference.

Driving on I-95 South in Philadelphia, late October 2011, I passed a billboard for Breast Cancer awareness month. “Ah” I said, “I never want to be part of that club!” One month later I would be handed my membership, and would begin a journey that changed my life.

November 18, at age 41, while snuggling my 3-year-old daughter Aliya, her head hit a hard pea sized spot in my upper right breast. Calling my other daughters, Gianna and Isabella, into the room, I asked them if they could feel it too, and indeed, they said they could. I didn’t really think too much of it. I had never even had a mammogram. I called my gynecologist and made an appointment. She too, could feel it, and scheduled the mammogram for early December.

After the testing was over, the doctor who performed the biopsy looked at me and said, “This is definitely breast cancer, when you get the results on Monday expect it to be cancer.” Uh. OK. I was completely shocked. I was completely alone. (more…)

Li-Fra-What?

August 5, 2014

IMG_2502LBBC guest blogger Kate Crawford’s family was no stranger to cancer of all types, but after she was diagnosed at the age of 28 with HER2 + metastatic breast cancer the family started to wonder if genetics were to blame and urged her to undergo genetic testing. Today she shares her story on making the decision to have genetic testing and how that affected her and her family, including her young children. 

I was 28. I had no family history of breast cancer, but had a family history of cancer in general. My mother was diagnosed with thyroid cancer at 27, my grandmother died as a result of an incurable brain tumor and my grandfather had pancreatic cancer. One thing everyone pondered when I was diagnosed was: why? Why would an overall healthy young woman present with metastatic breast cancer? It is an extremely personal decision to have genetic testing. More than half of gene mutations are hereditary which means a diagnosis of an abnormality may mean your mother, sister, niece, cousin or your child could also be at risk.
I was worried about my children and decided to meet with the oncology genetic counselor in early 2013. It was one of the most informative meetings I had concerning my diagnosis. She explained to me how genetics play a role in cancer. Genes are fragments inside of cells, which are in chromosomes, and made of DNA. DNA contains the instructions for building proteins, which controls the how the cells make up your body. If there is a mistake in one of your genes, those cells will not grow and function properly which can lead to genetic abnormalities, like being more prone to develop certain cancers. She suggested that I be tested for the popular BRCA 1 & 2 gene mutations. A simple blood test and a little bit of waiting revealed that I was negative for a BRCA abnormality. “I would like to have you tested for one more thing.” she quietly stated, “Li-Fraumeni Syndrome”. “Li-Fra-what?” I asked. (more…)

Getting On Track – LBBC’s Reimagined Fall Conference

July 30, 2014

emailHeader760x160Our annual fall conference features three tracks because breast cancer is not just one disease. Clifford A. Hudis, MD, chief of the breast medicine service and attending physician at Memorial Sloan Kettering Cancer Center in New York City, wrote this blog post about the reasons for these tracks and how breast cancer treatment became more individualized. A member of LBBC’s medical advisory board, Dr. Hudis will lead our morning plenary session on metastatic breast cancer. 

Hudis_lbbcblogpostGiven LBBC’s recognition that not all breast cancer is the same and not all patients need the same information, it is natural to see that the annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, is organized in tracks that enable participants to most efficiently focus on what they find to be most relevant. 

Not Just One Disease

Starting with oncology pioneer George Beatson’s 1896 report that some, but not all, women with advanced breast cancer responded to treatment that reduces estrogen in the body, it was clear that we confront more than one, uniform disease. The subsequent description of the estrogen receptor by cancer researcher Elwood Vernon Jensen in 1958 simply allowed us to test for what we already knew – that some cancers are more or less likely to respond to hormone therapies.

The more recent description of the human epidermal growth factor receptor–2 (HER2) and the development of effective treatments that target it added another dimension to “binning” breast cancers. With effective hormone and anti-HER2 therapies we can no longer pretend that cancer is cancer is cancer. One size does not fit all, and one disease is not the same as another.  (more…)

It’s About You: Lu Ann Cahn’s Story

July 23, 2014

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  Cahn_photo2014We would like to introduce you to our blogging series, “It’s About You.” In addition to telling you their personal story, our bloggers in this series talk about their experience with past LBBC programs and/or their anticipation for the upcoming fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences. Today, NBC10 reporter Lu Ann Cahn kicks off the series by sharing her breast cancer journey and the importance of connecting with individuals who share your experiences.

I was talking to a woman who just got through her second year of survivorship. We’d made a lunch date to talk about work, business opportunities.

I’d almost forgotten she’d had breast cancer until she mentioned she was dealing with horrendous hot flashes.

“The tamoxifen is making me crazy” she said.

“How are you feeling otherwise?” I asked

” Oh fine. I just want to forget about IT and move on.”

The IT she didn’t want to dwell on was Breast Cancer…and yet we spent the last twenty minutes we had together during our meeting, sharing our experiences, listening to each other.

I wished we’d started talking about it sooner. As much as she wanted to “forget”, I could tell it was a relief for her to talk to someone who has been there; someone who you don’t have to explain too much to, so much is already understood.

Her emotions were close to the surface; which is probably why she said she wanted to “forget about it”. Tears welled up in her eyes as she talked about how terrifying it’s been, the diagnosis, newly remarried, with a teen son.

I know . I remember.

It has been 23 years since I was diagnosed with an aggressive breast cancer. My daughter was four years old. The year before breast cancer, I was hospitalized for 5 months. I had to have my colon removed because of severe ulcerative colitis. I was just recovering and feeling better when I started to feel a vague mass in my right breast. (more…)

LBBC’s Annual Fall Conference is for You!

July 16, 2014

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LBBC’s Annual Fall Conference, Breast Cancer Today: Individual Treatments, Shared Experiences, has a new look and feel. Catherine Ormerod, VP of Programs and Partnerships shares her highlights for the conference, taking place on Saturday, September 27, 2014 Philadelphia, PA.

Catherine-Ormerod 1Breast cancer research and treatments are constantly changing. It can be difficult to stay current with and understand the impact of these changes on you and your life. That’s why we have adapted this conference to connect you to trusted specific information. Consulting with some of the nation’s leading health specialists, this year’s conference will offer tracks to help you access the specific information that you’re seeking.

At the Breast Cancer Today: Individual Treatments, Shared Experiences conference you will get the unique medical information you seek for your specific type of breast cancer, while connecting you to others in a supportive environment. Our tracks are:

  • Triple-negative: presented in partnership with Triple Negative Breast Cancer Foundation
  • Hormone receptor-positive or HER2-positive
  • Metastatic

You can choose to follow a track or attend individual sessions based on your diagnosis or concerns. Our sessions will include information about the latest in breast cancer news, treatments and care and wellness. They will be presented by renowned breast cancer experts such as Virginia Borges, MD, MMSc; Clifford A. Hudis, MD; Rita Nanda, MD and Marisa C. Weiss. Topics will range from targeted therapies, metastatic breast cancer clinical trials, managing the side effects of chemotherapy and more, plus an engaging closing plenary, Thriving! A Discussion on Living Well – Body, Mind and Soul.

Attending a conference is a great way to not only get the latest information, but to connect with others and build a community of support. We often hear how long lasting friendships were created at LBBC conferences. I encourage you to take advantage of the many ways to share your experience – there will be breaks throughout the day, a special luncheon, closing reception and meetup groups organized by shared interests.

Registration for the conference is $50 per person but if you register before September 5th you will receive our early-bird discounted rate of $40 per person. We offer a limited number of travel grants and fee waivers on a first come, first served basis. Special thanks to Triple Negative Breast Cancer Foundation’s for its support of travel grants to women diagnosed with triple-negative disease.

Visit lbbc.org/fallconference to register for the conference, apply for a fee waiver or travel grant and to learn more about our speakers and conference sessions.

I hope you can join us in Philadelphia this September!

Catherine Ormerod
VP, Programs and Partnerships, Living Beyond Breast Cancer
cormerod@lbbc.org
P.S. – Follow #LBBCconf on Facebook, Twitter and Instagram for conference updates, staff picks on where to eat in our hometown of Philadelphia, what to see and much more!

I loved everything about Yoga on the Steps: Kansas City

July 9, 2014

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Wendy Hazlett, LBBC friend and long-term Silpada Field Development Director of the Northeast Region shares her breast cancer story and why she’s looking forward to LBBC’s Yoga on the Steps: Kansas City for the 2nd year in a row! 

 

I was diagnosed with breast cancer in June 2011.  It was through a routine mammogram and I still thank God each day for the expertise of my radiologist!  I never thought “why me?”, but instead jumped right in to “beat this”.  We had been thoughtfully watching a lump on my left breast throughout the years, so when the mammogram came back saying that I had cancer in my right breast and my surgeon recommended double mastectomies, I followed the recommendation and had a successful surgery in August 2011.

 

I had my first reconstruction surgery that December – which my body rejected.  This caused me to undergo 3 additional surgeries before being able to close this chapter in my life in December 2012.

(more…)

I’ve Reached a Milestone…My Halfway Mark

June 20, 2014

Tiff Smiling Tiffany Mannino is back sharing another ‘Dear Lola’ journal entry with us; letters penned to her future daughter about her breast cancer experience. This time she shares her thoughts and feelings about being halfway through her chemotherapy treatment…

 

April 19, 2010

Dear Lola,

I know it has been quite a long time since I’ve written. Although I have thought about you every single day, the truth is, I have not wanted to share with you how I’ve been feeling. I always envisioned that what I would write to you would inspire and uplift you as I am a firm believer in finding the positive in every situation.  Truthfully, I’m having an incredibly difficult time finding the light in the midst of darkness at the moment as I’m going through such a challenging time in my life.

The last time I wrote to you was on the eve of my first chemo treatment. I was filled with great anxiety and anticipation. Well, now I should be celebrating because I’ve reached a milestone…my halfway mark. It has been eight weeks, and I have completed four of my eight treatments. Although I’m thrilled to be halfway done, I’ll admit, that doesn’t replace the dread I feel that I still have four more! I’m not going to sugarcoat it, chemo totally sucks!

Going through chemo for me has hands-down been the most difficult part of the breast cancer journey and truthfully, the hardest thing I thing I’ve ever faced. Each treatment has brought on a different set of challenges to face.

The first treatment made me violently ill to the point I was practically vomiting up my intestines. I remember lying in bed at 3 o’clock in the morning writhing and crying out to my mom, begging her to make it stop. In between tears, I pleaded with God to take away my pain. At that moment, my mother wrapped her entire body around me and with tears in her eyes, just held me like a baby. It is amazing to me as a 36 year old adult, how much I wanted and needed my mother as if I were a little child once again. In that moment, I realized that we never, ever outgrow our mothers and the need for their love and care. (more…)

Major Plumbing Problems

June 5, 2014

randi rentzRegular LBBC guest blogger Randi Rentz is back! Today she’s tackling a topic we as a society consider rather taboo but while going through her treatment she found it became quite necessary to address the issue with her oncologist…

What ever happened to the old saying “in by 9, out by 5”? For me, after my cancer surgery and treatment it was “in at 9 out IN out IN out IN by 5” if I was lucky. There is nothing – absolutely nothing like being constipated after surgical procedures and treatment. Not only did I experience being “stopped-up” … as in non-functioning, total shut down, zippo, but one of the unpleasant side effects of my Taxotere treatment was colitis, an inflammatory process in the bowels resulting in diarrhea-diarrhea-diarrhea. Oy vey is mere. My plumbing problems were ever wretched. (more…)

Yoga: A Survivor’s Tool for Strength

May 27, 2014

KateGarza2 for 5 28Kate Garza is a mother of three teenagers, cancer survivor and yoga instructor in Cheltenham. Her “Team Kangaroo-om”  participated in our event, Yoga on the Steps: Philadelphia, on Sunday, May 18.  For more information or to register for a Yoga event near you, visit yogaonthesteps.org. Read Kate’s blog at LotsaHelpingHands.com.

I climbed the steps of the Philadelphia Art Museum last Sunday for Living Beyond Breast Cancer’s Yoga On The Steps, a sun drenched block party of yoga enthusiasts and breast cancer affiliates. Occasionally my thoughts traveled back to last year’s event, which I attended during my own active treatment, bandanna wrapped around my chemo-bald head. On that gray day a year ago I felt as bad as the cold fog and drizzle that enshrouded the steps.

But last Sunday, bathed in sunshine, I shook off a year and a half of living with breast cancer treatment. I gathered with a large team from my kids’ high school, faculty and students together. I was there to give and gain support and to advance LBBC’s mission of bringing patients together with resources throughout the journey, one that can thankfully now include many years of health beyond treatment.

Cancer survivors have long had an intuitive sense that yoga helps body and mind, but now we have studies to prove it. In March, the Journal of Clinical Oncology published a study of 191 breast cancer patients by researchers at MD Anderson Cancer Center in Houston. It linked yoga to improvements in self-reported quality of life, including measures of mood, pain and fatigue. Practicing yoga also appeared to help regulate the stress hormone cortisol, which is tied to poor survival among breast cancer patients.

Aware of these unique qualities of yoga, Living Beyond Breast Cancer has held Yoga on the Steps as its signature fundraising event since 2001, and in recent years has expanded to other cities — this July in Kansas City and September in Denver. Last year, LBBC, the Ardmore-based national education and support organization, published a Guide to Understanding Yoga and Breast Cancer, detailing the benefits of yoga to coping with anxiety, fatigue, strength and body image.

But what exactly is it about yoga that helps? (more…)

My Metastatic Breast Cancer Story

May 23, 2014

CarynPhotoLBBC guest blogger and regular volunteer, Caryn Kaplan was recently featured on CBS Talk Philly to discuss her journey with metastatic breast cancer, along with another LBBC friend and woman living with metastatic disease, Jewel. Here Caryn shares her experience doing the segment and why it was important to her to not only share her personal story but share about MyMBCstory.com which has helped her and continues to help her throughout her day to day life by providing information and tools about metastatic breast cancer…

Tuesday had finally arrived!!!  I had waited anxiously for this day….

It all started from an email from Kevin Gianotto, LBBC’s associate director of marketing corporate partnerships.  He had asked if I would be interested in being interviewed on CBS Talk Philly with Pat Ciarrocchi.  The topic was about living with metastatic breast cancer and also about MyMBCstory.com which is an online resource center developed by AstraZeneca with support and input from LBBC and Metastatic Breast Cancer Network (MBCN) which provides tools and information for women living with metastatic disease. I was really excited to discuss this site because it has really helped me through my journey and I was so excited about the opportunity, having been volunteering with LBBC for several years, for yet another chance to get my message out there: that there is life after a metastistic breast cancer diagnosis.  A life that is full and active, one to be lived and enjoyed.

I couldn’t wait!!! (more…)


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