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

Discussing Fertility Preservation with Young Patients Diagnosed with Cancer

Kristin N. Smith, a patient navigator at Robert H. Lurie Comprehensive Cancer Center, blogs about some fertility options healthcare providers could discuss with young patients diagnosed with breast cancer. Ms. Smith is the speaker for our webinar, Fertility and Breast Cancer: Educational Opportunities and Preservation Options. Register now for this program and discover more about how you can help young women learn about fertility after breast cancer.

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Providing care to young cancer patients who wish to pursue fertility preservation prior to initiating cancer treatment requires the collaborative efforts of oncologists, reproductive endocrinologists, nurses and many more within a short time frame.

Being able to effectively communicate and educate patients about the potential gonadotoxicity of cancer therapy, or damage to reproductive organs caused by treatment, and the available options for fertility preservation is essential to improve patient care. Many of the treatments we use to treat cancer for adolescent and young adult (AYA) women can decrease the likelihood of having biological children. High dose alkylating agents and pelvic radiation can destroy the ovarian reserve; radiation to the brain can harm the way the brain communicates to the gonads and surgical resection of reproductive organs can all make family building more difficult for patients.  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.

TNBC Aware: Moving Forward After a Triple-Negative Metastatic Diagnosis

Cheryl Solomen writes about understanding her diagnosis, maintaining her routine and doing the activities she enjoys while living with triple-negative metastatic breast cancer.

 

I was diagnosed with triple-negative metastatic breast cancer in October 2012.

I was visiting with my daughter in Florida with my fiancé in September. While showering, I felt a mass in my left breast – it was hard and I was terrified.

When I got back home I called my primary care doctor and went to see her. During the appointment, she said she didn’t think it was anything to worry about. With that I was supposed to be appeased, but I wasn’t – I knew something was wrong. I insisted that I wanted a script for a mammogram and ultrasound. I went for these tests the same day and the radiology technician said preliminarily that the lump looked abnormal – the technician suggested I see a specialist.  I went back to the doctors very upset. I saw another doctor and he referred me to a breast specialist whom I saw the next day.

The specialist was wonderful and comforting and insisted it was early and “we caught it.”  “How do you know that?” I asked.  I wanted to make sure.   I semi-digested the news and was ready to begin my treatment plan. Then I learned that my PET scan showed the breast cancer had metastasized to my lymph glands and liver.  I didn’t even know what that word metastasized meant or what any of this meant. Tests also revealed that I was diagnosed with triple-negative disease. Another term I had never heard. That was scary. Continue reading

TNBC Aware: Education and Support Through Virtual Community

Today, March 3, marks Triple-Negative Breast Awareness Day. LBBC is marking the day with a Twitter Chat and an . Jennifer Stringer Staggs kicks of our series with a post about being newly diagnosed with triple-negative breast cancer, worrying about her daughter and sister, and finding support and community online. 

 

When my provider told me that I had triple-negative breast cancer, I was overwhelmed. Before learning my diagnosis, I Googled the different kinds and triple negative scared me the most. I read a lot about this type of breast cancer, and was told a lot of things that scared me. For example, I heard that if I had triple-negative that my chances of survival would be less than if it was hormone-sensitive, and that there was more of a chance it was genetic and could be passed on to my children.

My provider gave me a lot of information, but I found the best information going on Facebook and finding breast cancer forums. Diagnosed at age 29, I did not want to go to a local support group that had a huge age gap. It was a lot easier for me to get information and support online because everyone there either wanted the same information or already went through it. It felt more like a sisterhood in the forums. Nobody judged the questions I had and they were able to tell me what to expect from the treatments I was about to receive.

I got some of the best information going to Living Beyond Breast Cancer’s Fall Conference. I listened to professionals explain what triple-negative meant and what kind of treatments and side effects to expect. They also had an expert speaking about young women going through all of this and what to expect from “chemopause” and changes in your sex drive. I learned so much information there that none of my doctors covered.

Having triple-negative breast cancer made me very concerned for my daughter and my sisters and their kids. I worry they could still get cancer, even though I tested negative for the BRCA gene. I don’t want any of them to have to go through what I have had to endure. Continue reading

You are not alone.

A metastatic breast cancer diagnosis can be overwhelming.  But no one needs to face it alone.  In 2014, Lesley Glenn attended LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer after learning of her diagnosis. Lesley, a wife, mom, daughter, friend, artist, blogger and metastatic breast cancer “thriver”  is an arts integration specialist with Students Pursuing Literacy through Art Together (SPLAT), an initiative that she created for the City of Long Beach’s Afterschool WRAP programs. This year, she is training to summit 14,500 feet on Mount Whitney for her 50th birthday. And, she “loves her life.” This is her story.

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Lesley Glenn

My name is Lesley Glenn, and I am a metastatic breast cancer “thriver.”  I call myself a “thriver” instead of a “survivor” because I choose daily to flourish and prosper in my life despite cancer.  I was first diagnosed with stage IIB ER/PR-positive, HER2-negative breast cancer in November 2012.  What words are there to describe this life changing event?   Jolted, rocked and rattled are just a few.  However, I resolved in my mind that I could give 8 months of my life to treatment, because at that time, this is how long my doctors told me it would take to “beat” this.  And I was in it for the fight.

It never crossed my mind that they might find other suspicious “spots” in my body, and when they did, I was still committed to my 8-month plan.  However, chemo took its toll on me in the first 8 weeks of treatment, and I found myself spending a good portion of a month in the hospital, with a life-threatening case of sepsis.  It was at this very low point that I knew something was not right, and after getting out of the hospital, I stopped all future chemo treatments and demanded a second opinion.  Through the course of what I call serendipity, I was led to a team of amazing doctors at Kenneth Norris Cancer Center at USC, who offered a treatment plan that nurtured my whole person, body and soul, back to health.  It was during this time that I was diagnosed with metastatic disease – meaning the breast cancer had spread to another area of my body, in my case the bones in my right shoulder.  My 8-month plan was now erased with what could be a life-long condition.  The learning curve got a little more confusing.

“Allow yourself to feel every emotion that comes your way, knowing that you are not alone in the journey and there are others who are going through the same thing.”

I no longer fit in with the women who had stages I-III of the disease, and sometimes felt like the “elephant in the room” when it came to sharing my experience with others whose breast cancer had not progressed to metastatic. While starting to make sense of my stage IV diagnosis, I found an online group called Club BC Mets, which was created specifically for women with metastatic breast cancer.   As part of this group I began a dialogue with others who shared the same journey as me, most of whom were further along in their diagnosis, and had been thriving for years with metastatic disease.  It was here that I learned about LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in Philadelphia.  I read up on it and thought it might be good for me to be with other women, women who understood what I was experiencing.

At first, considering the costs involved I didn’t think I could attend. But then, I happened upon their travel grant and fee waiver program and decided to apply.  LBBC has made the process to apply for this financial assistance so easy, and within just a couple weeks I was given both the travel grant and fee waiver. I went back to my online support group, asked if anyone else was attending and if so, if anyone was looking for a roommate.  This was my introduction to Jill, who was the moderator of the group.  She was also attending on a travel grant, and we decided to room together in Philadelphia for the conference.

I flew into Philadelphia very late the Friday night before the conference was to begin, excited, nervous and a little apprehensive.  When I got to my room, Jill had already checked in. She graciously greeted me and we talked for a few hours before calling it a night.  Saturday morning came, and we made our way downstairs for the start of the conference.  It was at that moment as I entered the main conference area that I started to feel very overwhelmed.  I was catapulted into a sea of women, who were all at different stages of metastatic disease.  I remember taking a deep breath, and giving myself a mental pep talk…”You can do this, Lesley.”   But then, seeing all the other women around me led to the following thought:  Did any of us really want to be here?  Because this is not the kind of conference one might typically say “HEY, I want to attend this!”

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Attendees at last year’s conference enjoy a moment of fun.

Yet, we were all there for a purpose – to know we were not alone.   As the day unfolded, as providence would have it, I met several women who also felt the same way I did: overwhelmed and just a tad guilty. Guilty because we were a percentage of those with METS who are called oligometastatic, or those having 5 or less areas of metastatic disease.  Having these women to dialogue with was an encouragement. However, what was more inspirational were the women who were 5, 10, 15 years in, who cheered us on and made us feel normal.  As if there was or is a normal with cancer.  My roommate Jill was literally my Godsend for the weekend.  Every thought, every question, every time I wanted to hide, she gently pulled me up and helped me to make sense of all it.   While I took away lots of meaningful information from the LBBC Mets Conference, it was the relationships that were forged that made the difference for me in my first year attending.

“You are not alone in the journey and there are others who are going through the same thing.”

One year has gone by, and I have grown so much in my quest to thrive with mets.  I believe that if I were to attend again this coming year, I would be more prepared as to what to expect, and what I would be looking to get out of the conference.  If I were to encourage first timers, my best piece of advice is “Expect everything, expect nothing.  Allow yourself to feel every emotion that comes your way, knowing that you are not alone in the journey and there are others who are going through the same thing.  Don’t be afraid to ask questions and give yourself mini time-outs for when you feel overwhelmed.  But mostly, know that this tribe of women are all on your side, willing and excited to cheer you on through your journey with mets and beyond.

 

This year, you can connect with other women at LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer.  The event takes place April 11 – 12 at the Loews Philadelphia Hotel and travel grants and fee waivers are available for those who qualify.  To learn more, visit LBBC.org or call (855) 807-6386.

A Symbol of Strength, Connection and Hope

Dear Friends,

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Last year we embarked on a process to refresh and re-imagine our look. Nearly two thousand of you responded to our survey and shared your thoughts. We used your feedback as the foundation for this important work and we’re excited to share our new logo with you.

 

“This new logo is a symbol of what many of you told us you appreciate most about Living Beyond Breast Cancer: strength, connection and hope.”

This new logo is a symbol of what many of you told us you appreciate most about Living Beyond Breast Cancer: strength, connection and hope. We hope you like it.

 

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On behalf of all of us at LBBC, thank you. Please let us know what you think.

Warmly,


Jean Sachs
Chief Executive Officer
Living Beyond Breast Cancer
354 West Lancaster Ave, Suite 224
Haverford, PA 19041
(610) 645-4567

Toll-free Breast Cancer Helpline: (888) 753-LBBC (5222)