Archive for the ‘treatment’ Category

I Talk To Strangers, You Should Too!

March 28, 2013

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Long time LBBC blog contributor, RANDI RENTZ, graduated with honors from The Johns Hopkins University with a Masters degree in Special Education. She was an editorial assistant for a publishing company in suburban Washington,DC before becoming a special education teacher in a school district outside Philadelphia, PA. Randi currently is an Asperger’s Support Teacher for grades kindergarten through fifth. Presently, Randi has her own consulting company for children on the Autistic Spectrum where you can see her work at   www.helpforaspergers.com. She is a proud member, supporter, and blogger for many breast cancer organizations and never leaves the house without diamonds. Visit Randi at her web site at www.randirentz.com. Be sure to check out the teaser for her upcoming book “Why Buy a Wig…When You Can Buy Diamonds!”

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Call me crazy, but I look forward to waiting in line, and just about any opportunity to shoot the breeze with people I don’t know. I’m chummy with the guy who pumps my gas, (the only gas station nearby where they still pump gas for you), still exchange holiday cards with my 4th grade elementary school teacher, and the other day I spent a solid hour gabbing with an 81-year old woman I met at the tailor’s while having my pants hemmed.

I’m now a life-long, die-hard people person. I never used to be, though. In fact, I never enjoyed chatty encounters with people I didn’t know…until cancer. I wasn’t hostile before breast cancer.  Every day I had pleasant exchanges with strangers and acquaintances—an enthusiastic “Morning!” or a friendly “Have a great day!”  Such moments continue to be life-affirming, yet, prior to breast cancer, they were blessedly brief.

On-the-fly updates from people I’ve barely met used to drain me. Seriously.  I always felt obliged to respond with genuine emotion, to pay real attention. I would fake outrage or concern, with a performance that was definitely Oscar worthy. That meant stopping whatever I was doing, and force myself to focus. Since my laser-beam concentration was always sensed by the people stopping me, their details got longer and longer. Oy, vey! I felt trapped like a mouse in a maze.

Did breast cancer make me a people person? Well, I think it made me more aware of the little moments in life that make up the big moments. I now enjoy being a true people person—even though I’m inclined to dislike anyone who describes himself/herself this way. Go figure. I digress, sorry. Anyhoo, hear me out. Lifting your head and engaging with whoever happens to be standing next to you is worth the effort. It’s nice to see people smile and to genuinely smile back. It really feels good and refreshing. You should try it.

For one thing, you never know when you will receive priceless advice.  The 81-year-old cautioned me to get in good with my son’s future wife and to always take the dog out for an evening walk to do “its business.” Little did she know, I have no children and own two cats which use a litter-box. Needless to say, I felt it worthy to file away her words of wisdom. Maybe a stepson and a dog are in my future. Who knows? I digress. Sorry. When I left the fitting room, fiddling with the waistband of my pants, she said, “With posture like that, who needs Spanx? Coming from a stooped octogenarian, her words felt like a wake-up call to enjoy my youthful existence.

I believe my world is bigger with my random encounters. My brushes with strangers bring me the thrill of the unexpected, to glimpse a world I used to brush off and otherwise never see or appreciate. In the frenzy of life, with intense money, work and time pressure, I honestly didn’t have much conversational energy to spare.

Now, I think of it as a habit as “meeting new people,” even if I never see them again. My encounters with strangers bring me back to a place where I long to be. I never had grandparents, because they died before I was born.  But now I cherish chance meetings with people of all ages, especially older people. I find their perspective to be rather eye-opening.

Instead of rolling my eyes, I appreciate the interruption. I am so grateful for the little things in life. I now understand what being a warm person means.

And now, onto the Spanx…

LBBC’s Triple-Negative Breast Cancer Focus Groups Need Participants!

March 27, 2013

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Do you have triple-negative breast cancer, or know someone who does? LBBC is planning several focus groups to learn about the needs of women living with triple-negative breast cancer. Groups are planned in the areas of Chapel Hill, N.C., on April 10; Philadelphia, Pa., on April 12 and April 13, (focusing on metastatic breast cancer); and San Francisco, Calif., and Indianapolis, Ind., the last week of April (dates TBD). Groups last 90 minutes, and participants receive a $25 gift card for their time. If you are interested in participating in a focus group, please contact us ASAP at publications@lbbc.org and let us know which location interests you. We will be in touch with more information!

LBBC Introduces New Guide To Understanding Breast Cancer

March 25, 2013

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Living Beyond Breast Cancer (LBBC) has announced the release of Hormonal Therapy, the newest title in this national nonprofit’s library of Guides to Understanding Breast Cancer. It joins nineteen other LBBC publications available in print and electronic formats designed to address the needs of women who have been diagnosed with breast cancer.

 

The guide provides insight and answers about the complexities of hormonal therapy, treatment that reduces estrogen in the body, for women with breast cancer. Hormonal therapy for breast cancer is sometimes referred to as endocrine or anti-estrogen therapy. Breast cancer hormonal therapy can reduce the risk of disease recurrence, prevent new breast cancers and improve survival. Approximately 70% of breast cancers are hormone-sensative¹ and many women are likely to receive hormonal therapy as adjuvant therapy – treatment given after primary therapy.

 

The Guide to Understanding Hormonal Therapy was co-authored by Janine E. Guglielmino, MA, LBBC’s director of publications and strategic initiatives, and medical writer Robin Warshaw.  “At Living Beyond Breast Cancer, we know women face many choices when it’s time to begin treatment for hormone receptor-positive breast cancer,” Guglielmino states. “This guide was developed to help women ask their providers informed questions about how hormonal therapies and their side effects may impact their day-to-day lives.  And since hormonal therapy lasts for many years, the guide aims to address the questions women have today – as well as those that may arise tomorrow – as those concerns may very well change over time.”

 

In addition to Guglielmino and Warshaw, a committee made up of more than a dozen oncology professionals, LBBC staff and women affected by breast cancer reviewed and contributed stories to the sixty-six page guide, which is divided into eight sections and written in clear and easy-to-understand language.  Section topics include hormonal therapy options, common questions about treatment decisions, coping with side effects, what to expect when treatment ends and additional resources.

 

The guide focuses on hormonal therapy for early-stage (ed. note – stage 0-II) or locally advanced (ed. note – stage III) hormone receptor-positive breast cancer. Hormonal therapy is also used to treat recurrent and metastatic (stage IV) hormone positive disease and to prevent first breast cancers in women at high risk for developing breast cancer.

 

“We believe women can play a powerful role in their treatment when they have the resources to help them make informed decisions and be full advocates for their own health,” say LBBC CEO Jean A. Sachs, MSS, MLSP. “In addition to this guide, LBBC has additional resources at lbbc.org.”

 

Free, individual copies of the Guide to Understanding Hormonal Therapy are available online or by calling (610) 645-4567. Larger quantities may be ordered for a small shipping and handling fee.

 

¹National Cancer Institute

Fear of the Unknown

March 19, 2013

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LBBC blogger Vallory Jones is a freelance writer and breast cancer survivor living in Austin, Texas.  A self-professed Zumba “freak” and fitness “fanatic,” she has taught middle school English for 19 years and enjoys mountain biking, singing, writing, and playing guitar.  She recently celebrated a milestone – her first “cancerversary.”  You can read her personal blog at victoriousval.wordpress.com.

I received my diagnosis on Monday afternoon, and by Wednesday morning, I was en route to the oncologist. Dr. Patt came highly recommended, and I felt lucky to score such a last minute slot. The receptionist mentioned the doctor would be leaving for the airport immediately after our meeting, and after having gone to the wrong address already, I frantically punched it back into my GPS, racing to beat the clock. My Kia Soul was a black blur as I zipped in and out of Austin traffic. I couldn’t allow this cancerous tumor to stay in my body any longer than I absolutely had to, and the thought of missing my appointment brought on waves of nausea. I tried to will the tears to stop, but they streamed down my face until I was sobbing full force. I pulled into the parking garage and collected myself. “Wow, you’re a mess,” I told myself, but looking back, I was just a cancer newbie. I wasn’t properly equipped to process this turn of events.

Things sure changed in a hurry. One minute I was planning parties and social hours and the next I was sitting in a doctor’s office gearing up to beat breast cancer. I looked around the waiting room. There were other women who had no hair, and I trembled. “We all have cancer,” I realized. It was an unnerving feeling, and though I physically felt fine, I realized for the first time that something inside me was actively trying to kill me. Words can’t describe that realization. It changed me.

The meeting itself was pleasant enough. My doctor entered the room clad in a grey tweed skirt and jacket. I looked down, and my attention settled on her fashionable, black leather boots. Though I wasn’t aware of her credentials yet, her ensemble impressed the heck out of me. Kelsey, one of my friends, took notes, and I was glad she came along because it was amazing how little information I actually retained. Every time Dr. Patt spoke of the cancer, I felt a rush of heat overwhelm me, and it seemed like maybe I should lie down or at least fan myself. A couple of times I swore I was going to vomit, but that never came to pass.

Invasive Ductal Carcinoma. Most likely Stage 1. Fast growing. ER+/PR+. Lots of medical jargon made way into Kelsey’s notes, and at that moment, it was quite clear that there was no mistake. I really did have cancer, and no amount of disbelief could ever change that. Dr. Patt’s demeanor was reassuring, but my anxiety worsened when she uttered acronyms like MRI and CT scan. Then the words “bone scan” tumbled out of her mouth and slapped me hard in the face.

“Bone scan?” I squeaked. “What? This could be in my bones?” She seemed to think that was unlikely, but talk of these tests put me on pins and needles. I remember clearly the one thought I had for weeks, “I hope that I have a chance to fight this. What if it’s spread and I’ve missed the window?” Now, as a more experienced survivor, I realize that even at advanced stages, one can still live and fight cancer, but as someone who’d never even had anyone close to me diagnosed, I feared the worst. Add to my fears the possibility of chemo, which couldn’t be known, of course, until further testing. My head threatened to explode. Part of me was ready to jump off the table and get started while the rest of me wanted to bury my head in the sand and pretend this wasn’t real. I knew I couldn’t, though, because every day I waited, I feared my tumor was growing, or even worse, spreading to other places.

There aren’t adequate words to capture how I felt during those first weeks. I waited. I wondered. Would I see another birthday? Would I get another Christmas? My days were filled with tests and alternated between moments of strength and desperation. The poking and prodding made me feel like a science project, and if I never see a hospital gown again, it will be too soon. Like every other survivor will tell you, any modesty I had prior to cancer was certainly lost within the first week of my diagnosis. Getting up each day, putting one foot in front of the other, and making myself go to appointments was harder than anything I’d ever had to face.

I’m sure that’s why 16 months later, I feel invincible and like I should wear a cape every day to work, the grocery store, or the gym. As far back as I can remember, I’ve always had role models. Now here I am, my own hero. Quite honestly, that feels pretty good.

YOGA ON THE STEPS: WASHINGTON, DC REGISTRATION NOW OPEN

March 13, 2013

 

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Registration is now open for Yoga on the Steps: Washington DC, the signature education and fundraising event for Haverford, PA-based nonprofit Living Beyond Breast Cancer.  The event is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

“While Yoga on the Steps is similar to other nonprofit grassroots fundraisers it really is a one-of-kind event,” explains Jenna Jackson, LBBC’s special events manager.  “People are asked to register as a team captain or participant at yogaonthesteps.org and then fundraise for LBBC by asking family, friends and colleagues for donations. But instead of using a walk or run as our event’s centerpiece, we feature a yoga class.  Jennifer has designed the class so that anyone, regardless of skill level or body type can participate. Yoga on the Steps is a unique and powerful education program in its promotion of yoga as an important part of a person’s overall wellness plan.” t is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

What has grown into LBBC’s signature education and fundraising event began after Schelter’s friend and student, Courtney Kapp, was diagnosed with breast cancer.  Kapp wanted to use her home as a place where women with the disease could form a support network through the practice of yoga. She asked Jennifer to teach the class and also introduced her to LBBC’s executive director (now chief executive officer) Jean Sachs, MSS, MLSP. Together, the three women founded Yoga on the Steps.

“Now,” says Sachs, “thousands of people, most with no formal training, annually attend Yoga on the Steps in different cities to raise awareness of LBBC’s resources, stand in solidarity with women diagnosed with breast cancer and honor the memories of those who are no longer with us.”

Studies continue to indicate a correlation between yoga’s stretching exercises, controlled breathing and relaxation techniques with stress reduction, lower blood pressure and improved heart function. “More and more studies we’ve been seeing, especially over the last few years, really confirm the relevance of Yoga on the Steps,” states Sachs.

 

A study conducted by UCLA researchers suggests that yoga can help women overcome post-treatment fatigue which is estimated to affect as many as one-third of women currently in breast cancer treatment. The research, which was published December 16, 2011 in the journal Cancer, discovered that after three-months-worth of twice-weekly yoga classes, “a group of breast cancer survivors in California reported significantly diminished fatigue and increased vigor,” Andrew M. Seaman of Reuters Health said. Cancer, Volume 118, Issue 15

In addition, at the 34th Annual San Antonio Breast Cancer Symposium held in 2011, a study presented findings that women with metastatic breast cancer might benefit from the practice of yoga, as well. A small randomized trial was collaboratively conducted by yogis and physicians, including S.K. Gopinath, MD, from the Department of Surgical, Medical and Radiation Oncology at the HCG-BIO Super Specialty Center in Bangalore, Karnataka, India. The researchers found data that suggest the practice of yoga might reduce psychological distress and modulate abnormal cortisol levels as well as immune responses in patients with stage-IV disease. Medscape News Today

In 2011, LBBC began the implementation of a national Yoga on the Steps expansion initiative developed by the organization’s Board of Directors and senior staff as part of LBBC’s 2011-2015 strategic plan.  “Yoga on the Steps is a low-cost, high-return way to introduce LBBC resources to communities that may not know of their availability,” explains Sachs.  “We’ve established annual events in Philadelphia, Washington, DC and Denver with Kansas City, Missouri recently named as our fourth Yoga on the Steps host city.”

“The increasing popularity of yoga is a big factor in the growing success of the event,” she continues. “But more than that, it’s LBBC’s reputation of sound fiscal management and the trust our supporters have in us that energizes Yoga on the Steps participants to fundraise for LBBC at the grassroots level. We maintain the lowest overhead possible for the event ensuring our resources are always available to anyone in need.”

LBBC’s most recent annual report, released in July of 2011, shows that 86 cents of every donated dollar is used to fund services. For eight consecutive years LBBC has been awarded a four-star rating by Charity Navigator, the  country’s leading organization that evaluates American nonprofits, signifying it exceeds industry standards and outperforms most other charities within its cause. LBBC 2011 Annual Report

Businesses wanting to learn more about national and local sponsorship opportunities and benefits are asked to contact LBBC’s associate director of marketing and corporate relations Kevin Gianotto, at kevin@lbbc.org. General Yoga on the Steps and Healthy Living Expo questions should be directed to Jackson by emailing jenna@lbbc.org. 

About

LBBC provides services designed to help improve quality of life for women who are newly diagnosed, in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer as well as resources for family, friends and caregivers.  National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are examples of the services that are provided to help them make informed decisions for themselves and their families. 

If you are or someone you know is living with a history of breast cancer, regardless of stage of diagnosis, age, race, religion, sexual orientation or ability to pay, LBBC can help. For more information, visit lbbc.org to download a free copy of Empower, LBBC’s general information brochure or call (610) 645-4567.

“Hit it hard and hit it fast.”

March 13, 2013

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Last week, we introduced you to LBBC’s newest blogger, Laura Renegar, who was diagnosed with triple-negative breast cancer in 2011.  When we left off, Laura had asked her surgeon if the results he had just delivered did indeed mean she had TNBC.  Trying to be as compassionate as possible he stated, “Yes darlin’, it does.”   

Always the southern gentlemen even as I was being told I have been diagnosed with triple-negative breast cancer.  Here I was, thrown back down to the lowest point of the roller coaster ride yet. By this point, I had done enough research to know that I should be frightened. The research that I had seen showed the statistics and the prognosis of TNBC are not as positive as some other types of breast cancer, that there is not any targeted therapy for TNBC and that is usually very aggressive. Now I understood why my surgeon wanted my tumor out a few weeks prior. I understood why he didn’t want to waste another week waiting for the insurance company to decide the fate of my diagnosis while debating coverage for a blood test.  All things became clear. I had to become my own advocate and I had to seek every bit of information I could find and I had to do my research.  I didn’t know anyone that had triple-negative breast cancer, in fact, I had barely heard of it.

I had a port placed in my chest a few days later and in a few weeks, I began chemotherapy. Three days before chemotherapy I met my first survivor friend who had TNBC. She was coming up on her five year mark and I was impressed. She looked good and she was healthy. I became focused on just getting through chemotherapy because my oncologist said we were going to “hit it hard and hit it fast”, and we did.

I put my BRCA test results out of my mind and I gave 100% attention to staying well through chemotherapy. A month after my last chemotherapy treatment was my 48th birthday and it was time for me to make my decision for further treatment. Because of the fact that my cancer was triple-negative and the fact that I have the BRCA2 gene mutation, my decisions seemed pretty clearly defined. My oncologist seemed to think so, my surgeon seemed to think so, but yet, I had to make the final decision, and live with that decision, whichever path I chose.

I didn’t have to have a bilateral mastectomy. I didn’t have to have my ovaries removed. But if I didn’t have those surgeries, would that encourage a recurrence?  I clearly remember lying in my bed on my birthday and thinking “in order to have more birthdays, I have to do everything in my power to protect myself”.  I remember weighing my options. Even though my cancer was not in my lymph nodes, and I had chemotherapy, the fact that I was BRCA2 positive remained. My chance of a recurrence was extremely high; and the prognosis of recurrent triple negative breast cancer is poor. I had to do everything I could to secure my future and my life. I began researching bilateral mastectomies and what it meant to have my ovaries removed and what it would be like to be put in medical menopause at 47 years old. This option did not seem to be an easy path, but it did seem like the safest treatment path, to secure a future for myself.

The bilateral surgery, along with the oophorectomy (Ed. Note: the surgical removal of an ovary), was a hard surgery for me.  It was hard physically and emotionally, and my roller coaster ride continued through reconstruction while learning to live with menopausal symptoms and my new body.

March 1, 2013 was the date of my two-year survivor anniversary. I look back now and am so proud of the path I took and the decisions I made to ensure my health. I did everything I could possibly do to beat my triple-negative breast cancer diagnosis and reduce the chances of a recurrence.

Would I do the same thing over again? Yes I would!

My story is still unfolding but I live each day the best way I can. I volunteer a lot for the American Cancer Society, I continue to update my blog, I write stories and articles when I am asked to, and I tell my story when I am invited to speak about it. Mainly, I try to encourage women to be their own advocate, to get their annual mammograms, to have their yearly physical, and to do self exams. I encourage them to know their breasts and to know their health history.

I will continue to try and shine a light on TNBC until a targeted therapy is found. I now know 19 women with triple-negative breast cancer. Two years ago I was not fortunate enough to know, and love, these women but I consider this one of the many blessings of this diagnosis. If you are diagnosed with TNBC, please reach out to people in your community and to find other TNBC survivors. How? Ask your doctors to introduce you to some of them.  See if there is a local support group for TNBC.  You can also call the Triple Negative Breast Cancer Foundation and contact the American Cancer Society and ask for a TNBC volunteer with Reach to Recovery.

I also encourage you to seek out the many services available at LBBC for women with TNBC including their Guide to Understanding Triple Negative Breast Cancer, expanded sections of content on their award winning website and their upcoming free webinar featuring Dr. Eric P. Winer.

Take advantage of these resources and find other women – because they may need to have you in their life just as you will want them to be in yours.

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blog, too!

“Yes darlin’, – it does.”

March 6, 2013

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If we followed format, this is where we’d introduce you to LBBC’s newest blogger, Laura Renegar, with a few polite lines that could never  do justice to this amazingly talented and funny lady.  We’re still laughing over this offering of honesty:

When I had expanders in my chest they kind of formed a shelf below my collar bone. When I was sick and in bed and would eat propped up, I would CONSTANTLY have toast crumbs or Oreo crumbs on that “shelf” on my chest. Once I found a whole chocolate chip sitting there and once I found a piece of turkey. There are funny moments during expansion and reconstruction. 

Here is the first of a planned series of blogs where Laura will share her experiences as a woman diagnosed with triple-negative breast cancer.

On March 1, 2011, I received the call that every woman dreads. I was at work, sitting at my desk, holding my cell phone that showed the name of my OB/GYN calling. My mind debated about not answering the phone, but quickly considered the possibility that this phone call could be good news. When I answered that call, my life, and the life of my family and friends would be forever changed. “You have breast cancer” my doctor said, “I am sorry.” We talked for a few minutes as I sat numbly at my desk writing the name and number of the surgeon he suggested on a small piece of scrap paper.

A few days later my husband and I met my surgeon and his nurse. Right in the beginning of the appointment the doctor said “can I joke with you?” Are you kidding me? This was my kind of doctor! Not only did I want him to be able to joke with me, I needed him to be able to joke with me. No matter how serious breast cancer can be, I needed my medical team to be brutally honest, caring, and compassionate yet able to lighten some of the moments with a joke or some laughter.

My surgeon recommended genetic testing and I agreed to see a genetic counselor for my BRCA test. I had the blood test and genetic counseling and the waiting began. One week became two weeks. My insurance company was negotiating with the genetic testing company about my coverage for this $3,400 blood test. Two weeks! My surgeon scheduled my lumpectomy and sentinel node biopsy because he couldn’t allow my cancer to continue to grow and spread while waiting for the insurance company to make a decision. At this point I began to realize that my cancer was most likely aggressive. I was told that my cancer would be staged, and further diagnosed, when the tumor was removed during the lumpectomy. I felt lost and left somewhat in the dark. Every day seemed as if we were hurrying up for a test or an appointment and then we were waiting. I felt like we were always waiting for a call, an answer, or a test result. I felt immediate relief the night of the lumpectomy and sentinel node biopsy surgery, knowing that my cancer had been removed. I was very happy to have the surgery behind me, but little did I know that my real roller coaster ride was just beginning.

Two days after my surgery I got a phone call from the genetics counselor. Once again, a phone call that I was hoping was going to deliver good news – but I heard hard news instead. The phone call began with “I am sorry to tell you this, two days after your surgery, but your BRCA test came back positive yesterday.” What? The BRCA2 gene mutation put a whole different spin on my diagnosis. Now I felt as if I was at the bottom of the roller coaster loop and I began researching. My odds of getting breast cancer were obviously 100% (since I already had it) and the test showed my odds of getting ovarian cancer were over 50%. But what does this test say, and prove, about my chance of recurrence? I was recuperating from the surgery yet my mind and heart were nagged by this BRCA test result and worrying already about a recurrence. Five more days passed and we still had not gotten news on my pathology report from my lumpectomy. No news is good news right? Eight days after my lumpectomy, I was at work, and my phone rang; it was my surgeon’s nurse. No news was good news! My lymph nodes were negative for cancer and he was able to get clear margins. I am ecstatic, we are all celebrating and dancing around, and now I feel like I am on one of the upper tracks of my roller coaster ride.

Clear margins AND clean lymph nodes? How blessed am I? I am on the top of the world!

The next day I receive another phone call, this time it is with the result of my her2 neu test. I was still riding high on the lack of cancerous activity in my lymph nodes and the fact that he was able to get clear margins. My surgeon stated that my her2 neu test came back negative. I got very quiet and said to my surgeon, “this means I am triple negative, doesn’t it?”

He paused on the other end of the phone and said “Yes darlin’, – it does.”

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine. During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blogtoo!

Alysa Cummings: Yearly Check-Up

February 27, 2013

Alysa Cummings, Group Facilitator for LBBC’s writing workshop series Writing the Journey, shares a seasonal excerpt from her recently published cancer memoir, Greetings from CancerLand,  in February’s second submission to Living Beyond Breast Cancer‘s Writer’s Corner.

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Yearly Check-Up

Excerpt from Greetings from CancerLand: Writing the Journey to Recovery

Fourteen years later and not much has changed. Not much. Not really.

Starting with the oncologist’s grand entrance.

He knocks twice, opens the door and hurriedly strides into the examining room. His energy speaks volumes (Places to go; patients to see. so many patients; so little time). I am sitting there, a veteran oncology patient, already changed, sitting on the edge of the examining table, a salmon-colored cotton robe wrapped around me.

Welcome to my yearly check-up.Cummings-Alysa_medium

As always, we begin by shaking hands. That’s our ritual. Then it’s my turn to smile and recite my opening line: so how’s my favorite oncologist?

Your only oncologist, to the best of my knowledge, Dr. C replies. There he goes – correcting me, reminding me of our running gag about his need for precision, his attention to detail. In CancerLand, Dr. C is a living legend with hundreds of patients’ medical records stored right in his head.  He won’t take any notes during the exam and somehow never forgets a date, dosage or chronic complaint. Maybe that’s why I’ll never complain about any quirky personality traits of his. An oncologist who’s a bit obsessive is a good thing, don’t you think?

Any lumps, bumps or bruises? Dr. C asks, moving briskly into Act One: The Physical Exam. I lie flat on my back. He modestly opens the gown, uncovering one side at a time, keeping the opposite side hidden, and presses the tips of his fingers in a circular pattern. Then he says the word I’ve been patiently waiting for (perfect) as he finishes with the left side and moves around the table to begin his exam of the right. Twelve years of exams later and like an addict hungry for a fix, I inhale the word (perfect), and savor how good it feels (I’m okay, I’m okay).

But honestly, is this ironic, or what? After all, there might be a short list of politically (and clinically) correct terms that could be used to describe my post-treatment upper body (altered? revised? reconstructed?) But perfect? Hardly.

Does this doctor who deals with so many breast cancer survivors know the impact of his word choice? Or is “perfect” the word this particular oncologist has decided to use with his patients to indicate that there’s no sign of disease? All I know is that perfect is a lovely word, and I can’t wait to hear him say it.

The exam comes to a predictable conclusion with light banter about our personal lives and those acquaintances we have in common, and that’s when I suddenly think of a word that I have to add to our yearly check-up script.

So, tell me, Alysa, Dr. C asks, moving towards the door, ready to conclude the exam. Overall, how was your year?

I’m ready with the perfect answer.

Unremarkable, I say, my year was unremarkable. And I see the doctor cock his head with interest. I have never used this term in our conversations before. Over the years, he has, of course. To describe my CAT scans, bloodwork and Breast MRI results. To report that everything is normal, that there is nothing out of the ordinary.

An unremarkable year, I repeat. No surgeries. I’m hoping that next year turns out to be another unremarkable year. Unremarkable totally works for me.

It certainly does.  And now that I’ve said it out loud, I need to step up to that challenge and day by day make it real until I’m in this examining room again, twelve months from today.

A disease-free reality; in my mind that’s the most remarkable thing I can imagine.

Living Beyond Breast Cancer will host another Writing the Journey Series this Spring, hosted by Alysa Cummings. And the good news is that there will be two different Writing the Journey groups in Spring 2013 – one in Cherry Hill, NJ and one in Haverford, PA.  Check back to the LBBC Blog for more insights from Alysa and future Writing the Journey creations.  You can purchase your own copy of Greetings from Cancerland, on Amazon.com!

LBBC to host 7th annual conference for women living with metastatic breast cancer

February 13, 2013

 

MBCBannerForWeb

Living Beyond Breast Cancer (LBBC) has opened registration for its 7th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 13 – Sunday April 14, 2013 at the Loews Philadelphia Hotel.

Breast cancer is considered metastatic when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain.  There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.1

Previous conferences have attracted attendees from across the country by featuring leading national health care and wellness experts who present specialized plenary sessions and over a dozen workshops designed to address the complex medical, social and emotional situations many women experience when diagnosed with metastatic breast cancer. As in past years, workshops for family members and caregivers will also be offered.

Conference attendees will have the opportunity to ask questions about current research and clinical trials, treatment options and quality-of-life concerns. Additionally, attendees are given the chance to meet, connect and network with hundreds of women facing similar challenges expanding their peer support network. Travel grants and fee waivers, provided by Susan G. Komen for the Cure, are available for those who qualify.

LBBC’s highly specialized programming for women living with stage IV breast cancer stems from the nonprofit’s 2006 release of Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources. In this extensive report, LBBC consultants Musa Mayer, MS, MFA, and Susan E. Grober, PhD, reported their findings from a survey of 618 women living with stage IV disease. The survey focused in great detail on their use of and preferences for services in three domains: information, support and resources. The data revealed insights on the information, support and practical needs of women living with metastatic breast cancer so LBBC could address the gaps in tailored resources for this population.

To do this, LBBC created not only their annual conference but a variety of other resources.  Since the report’s release, a special subsection of lbbc.org just for women with metastatic disease has been significantly expanded, free webinars and regional community meetings feature topics of appeal specifically to the metastatic breast cancer community and the LBBC Guides to Understanding Breast Cancer: Metastatic Series includes specialty titles: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects, Understanding Palliative Care and LBBC’s newest publication, Guide for the Newly Diagnosed.

Visit lbbc.org to register online and download an event brochure. To register by phone or for additional information, call (610) 645-4567.

The conference would not be possible without the support of the event’s presenting travel grant and fee waiver sponsor Susan G Komen for the Cure®. Other event supporters include Title Sponsor Genentech. 

1 Data on File. 1006812. AstraZeneca Pharmaceuticals LP. Wilmington, DE.

 

LBBC is currently seeking women living with metastatic breast cancer or their caregivers who would be interested in sharing their stories. Leading up the conference, we’ll feature these first-person accounts here on the LBBC blog and promote them via lbbc.org, Facebook and Twitter.  If you would like to tell others your story, or have any questions, please contact LBBC’s Kevin Gianotto via email at kevin@lbbc.org.

 

Rachel Pinkstone-Marx: Book Review and CONTEST GIVEAWAY!

February 1, 2013

Love the recipes from Annette Ramke, CHHC, cancer survivor and co-author of the book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer? Now it’s time share our OWN! Read this review and leave YOUR favorite recipe in the comments section of this post. Annette will pick a winner to receive a FREE copy of  Kicking Cancer in the Kitchen! (Be sure to leave your name & email)

Kicking Cancer in the Kitchen Series

Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer

Annette Ramke & Kendall Scott

(Review by your faithful blog steward, Rachel!)

When you flip open the cover of Kicking Cancer in the Kitchen you learn that this book is “THE resource for the woman who has been handed the cancer card—and for the one who never wants to get it.” However, as a reader and a writer, I think that it’s categorized even better in their dedication. This book is for:

All those who have faced a major life challenge and kept moving forward with determination, because they just have way to much living left to do.

As I have now had the pleasure to read this thoughtful cookbook and speak with both of the authors, I surely connect every word of this book to that purpose.  Authors Annette Ramke and Kendall Scott are both cancer survivors, so they come equipped with the needs and perspective of women who have been diagnosed with breast cancer. In this sassy and insightful book of recipes and stories, they share real-life knowledge and experience about the healing power of food, along with a look into their journeys with breast cancer. These pages are filled with more than 100 recipes for living a healthy life while living with cancer and easing the symptoms of treatment. This should be considered a favorable resource for women, before, during and after treatment. It also doesn’t hurt to give it a read if you haven’t been diagnosed with cancer, but would like an in depth look at a healthy and disease-preventative diet.

Annette Ramke was 36 when she was first diagnosed with cancer, and while in treatment, became immersed in studying nutrition as a way to fight cancer. She felt better than she ever had, including before getting cancer, and decided to pursue further studies at the Institute for Integrative Nutrition in New York City, which is where she met Kendall. She is now a certified holistic health coach and works with those facing cancer and other diseases. She lives in Philadelphia, PA.

Kendall Scott was diagnosed with cancer at age 27. She then went from a meat & potatoes/ take-out pizza diet to leafy green veggies and whole grains in baby steps, and felt the improvement even while undergoing chemotherapy. After going into remission, she attended the Institute for Integrative Nutrition (IIN) in New York City. She is board certified in holistic health coaching through IIN and the American Association of Drugless Practitioners. Kendall teaches nutrition and cooking classes, leads webinars, presents at wellness events and writes online articles as a nutrition expert. She lives in Maine.

As you break the book down after your first read, you note that you can enjoy two large and very different sections of the book:  a “girlfriend’s guide,” where you learn about Annette and Kendall’s “ups and downs” with diagnosis and treatment, and then a thorough second half filled with recipes. The intentions of the book are to help and comfort woman dealing with the struggles and dietary mazes that come along with treatment, but–don’t get me wrong–Kicking Cancer in the Kitchen is a resource that  would definitely appeal to the health/diet-conscious person, whether they have cancer or not.

Focusing on the “cookbook” portion, the recipes range from being as easy as throwing a few ingredients into a blender for a “Gorgeous Green” or “Superfood” smoothie, to moderate difficulty for your “Seitan Strogonoff.” However, nothing seems out of a Beginner Chef’s reach.  Also, there is a handy section at the top of each recipe that starts you out with bullet points of  the recipe’s “healthy helpers” such as being  “detoxifying,” “immune boosting,” and of course, “constipation kicking!” Our authors also then provide a quick, yet informative introduction of the recipes healthy hints. Right in the center of the book is most likely where you will get lost, as you peruse the beautiful photographs of a selection of the finished products as you choose what meal to make yourself.

This uplifting cookbook/memoir will not let you down, as it is written like a guide coming directly from the heart: girlfriend-style. I’m sure you’ll find it hard to pick out just ONE recipe as your favorite!

Kicking Cancer in the Kitchen has received some amazing press, and it’s only right to let all of you hear what some of these acclaimed authors have to say:

“…a beautiful, delicious, and effective way to improve your health at any time—whether or not you have cancer or any disease. In fact, I recommend that all follow this sort of diet for optimal health!”— Christiane Northrup, M.D., author of the New York Times bestsellers: Women’s Bodies, Women’s Wisdom and The Wisdom of Menopause

“An essential guide to using food as medicine and creating an inhospitable environment for cancer, while delighting your palette and invigorating your senses. Getting well has never been more fun or tasty!” —Mark Hyman, MD, author of the #1 New York Times Bestseller, The Blood Sugar Solution

Kicking Cancer in the Kitchen offers, in one engaging and comprehensive package, what others don’t – first-hand experience, nutritional know-how, girlfriend-style support and tasty recipes – all designed to help kick cancer or keep you healthy. A healthy diet is an integral part of healing and fighting disease, and Annette and Kendall join you, step-by-step, and empower you to discover how easy and delicious eating well can be – starting with your very next meal! —Dr. Steven G. Eisenberg, Co-founder of California Cancer Associates for Research and Excellence and author of Dancing With The Doctor (2013)

Now it’s your turn! Leave your best recipe in the comments section of THIS book review post (along with your name and contact email address) and Annette will choose a winner!

annette1Annette Ramke, CHHC, is a certified health coach and breast cancer survivor. She took an integrative approach to treatment and focused on a whole food, plant-based diet. She coauthored (with Kendall Scott, CHHC), Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, released October 2. Learn more atTheKickingKitchen.com.


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