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.

My 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.

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.

My Fear of Breast Cancer Recurrence (A Poem)

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

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

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

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

Resilience and Breast Cancer

Research shows resilience can ease stress and improve life satisfaction among people diagnosed with cancer, but what does it mean to be “resilient”? In anticipation of our November 18 community meeting in Denver, Colorado, Jill Mitchell, LCSW, PhD, OSW-C, of the Rocky Mountain Cancer Centers offers some insight and tips on being resilient.

In physics, “resilience” is defined as the ability of a material to absorb energy when it is deformed, and to release that energy (bounce back).  The limit of resilience, in turn, is the point at which the material can no longer absorb energy elastically without creating a permanent distortion.

But resilience in the cancer world, is not as much about bouncing “back” as it is about bouncing “forward” – creating a “new normal” or even growing through the process of survivorship.

Resilience goes beyond just coping or just being “elastic.” It often also involves (or sometimes demands) a “permanent distortion in one’s life” (such as a loss of a breast, or a job or an anticipated future, for example).  However, it is these “distortions,” or losses, that can provide the fodder for growth and transformation when we call upon our internal resources (self-esteem, optimism, hopefulness, problem solving) and our external resources (friends and family, social and community support).

I am often awed and humbled by the ways in which people come to cope with and grow through the struggles or suffering they endure due to cancer.  One of the most important things to know is that although some people may have a more natural tendency toward resilience, we all can strengthen our ability toward resilience through a few specific strategies:

Start with your strengths – what already works for you, or has worked for you in the past?  Perhaps you are someone who needs to gather a lot of information.  Perhaps you feel rejuvenated being surrounded by nature, or writing in a journal or meditating.  Remind yourself about the strategies you already know help you to cope, and make time for those!  Resilience is about developing realistic goals and moving toward them.  Start with what works for you.

Develop and use your network of support – Share what you’re going through with your trusted loved ones, friends, and peers.   Explore support groups or consult one-on-one with your oncology social worker or other healthcare professionals who can be a resource for support, processing and validation.  Asking for help and sharing your thoughts and feelings with someone you trust can feel challenging and uncomfortable for people who are used to being in control or self-dependent. And yet, social support is a critical cornerstone for resilience. 

Writer Gives Tour of Breast Cancer Journey, from A to Z

The cover of Madhulika Sikka’s book, “A Breast Cancer Alphabet.” (image via http://www.abreastcanceralphabet.com/)

LBBC Writer and Editorial Coordinator Erin Rowley reviews Madhulika Sikka’s book, A Breast Cancer Alphabet.

Cancerland is a place you never planned to visit. Author Madhulika Sikka didn’t want to go there either. But through her book, A Breast Cancer Alphabet, she volunteers to be your tour guide as you navigate life after a breast cancer diagnosis. “This book,” she says, “is for all of you who have become members of a club you did not want to join,” as well as for your friends and family members.

A Breast Cancer Alphabet is a quick read – Ms. Sikka, a broadcast journalist who was diagnosed in 2010, writes that she wanted “a short book that wouldn’t tax my chemo-addled brain.” But she manages to address many topics, from the more obvious ones (B is for Breasts, D is for Drugs, M is for Mastectomy) to ones that may seem frivolous next to the question of survival, but are important to your quality of life (S is for Sex, H is for Hair, L is for Looks, F is for Fashion Accessories). In the chapter T is for Therapy, she stresses that treatment should go beyond chemotherapy and physical therapy. She says it should include psychotherapy and aspects of everyday life that are therapeutic for you, like watching a marathon of your favorite TV show or staying in bed (P is for Pillows, X is for eXhaustion, Z is for ZZZ’s.)

Hear My Voice: How I Manage Scanxiety

LBBC Board Member Amy Lessack writes about how she manages her emotions before and after she gets scans.

“You must be freaked out every time you get a scan and have to see the doctor.”

If you are a breast cancer survivor or someone living with metastatic breast cancer, this is something that well-meaning people say because they probably don’t know what to say.

The obvious answer is, of course, I am concerned and worried. You pray to whomever, whatever to get the clean scan and the OK from the doctor that you are good for 6 months, a year, or even more.

No one ever asked for breast cancer. I certainly DID NOT invite it in my life, and it needs to go. However, that is not my journey.  I continue to be on the roller coaster of vacillating between the 3-month and 6-month of scans and back to 3-months. So how do I handle it, manage my emotions and get through it? I get through using the following seven steps before every scan:

#1           I had to make a conscious choice – “scans are my friend.” Why are they my friend? Because they are the only things that can “see inside my body” and help the doctors and me cheer when things look good, and research or make a plan when or if necessary.

#2           I now schedule my scans on Mondays and doctor appointments the Friday after the scan. This is so that I don’t have to wait to hear the results knowing that it takes 2 – 3 days to get them.