First, You Cry

First, You Cry

From Chicken Soup for the Soul: Hope & Healing For Your Breast Cancer Journey

First, You Cry

Introduction

I’m not sure how many women expect to hear the words, “You have breast cancer,” but I know that I wasn’t one of them. In a small hospital examining room, with only my doctor for company, upon hearing those dreaded words, first, I cried.

If you’ve ever listened to Martina McBride’s country song “I’m Gonna Love You Through It” then you know my story. The woman in the song was thirty-eight years old and raising three small children. Her husband stood by her and loved her — as good men do. This song was not actually written about me, but like so many young women diagnosed with breast cancer, it’s my story, too.

Survivorship: a Breast Surgeon’s Viewpoint

“Am I going to die, Doctor?” This is a question I am frequently asked as a breast surgeon. On this occasion we were in a room, the patient dressed and sitting next to her husband, her hands wrapped around his. I had finished my explanation of the nature of her breast cancer — the stage, the treatment options, the complications and the potential for cure. A few days earlier she had come in for her initial assessment, when I had taken her history, examined her, and reviewed her imaging studies. The mammogram had revealed a spiculated mass — a cancer till proven otherwise.

So the biopsy results were not unexpected. I hate surprises, and I don’t want my patients to be taken by surprise either. Her question I knew to be rhetorical — after all not one of us (save the astronauts) gets off this planet alive. It was also not what she was really asking. She was asking, Am I going to die of breast cancer? Am I going to survive this disease?

There were unspoken questions too: Will I see my children grow up? Will I see grandchildren? Will I be able to function normally? How will this affect my life? What will I look like?

My answer to the initial question was, “Our goal is that you live long enough to die of flat feet at 105.” My answer helped change the mood in the room, and of course I know that flat footedness is not fatal. I said “our goal,” as I am one member of a team devoted to the care of patients with breast cancer.

As I reflect on this conversation I had recently, I think about what has changed since I started practice in 1991. The advances in the care of patients with breast cancer over that time frame are manifold. Most importantly, I can say that overall survival rates have increased essentially every year that I’ve been in practice.

What has brought about this change? Most likely the change is due to a combination of events. Expansion of mammographic screening and better quality imaging have led to a larger proportion of cancers being detected at an early stage. We have improved chemotherapy, including drugs targeted to certain proteins. Multiple gene assays on tumors are available to distinguish who will truly benefit from chemotherapy.

The breast surgery that I discuss has changed too. The advent of sentinel node biopsy in the late 1990s means that not every patient will have removal of all the lymph nodes in the axilla, a procedure which carries a much higher risk of lymphedema (arm swelling). Controlled randomized trials have shown us that not all patients whose cancer has spread to the sentinel nodes require a full axillary dissection. My practice as a breast surgeon has changed based on research, and I am grateful to those patients who volunteered to participate in clinical trials.

Lumpectomies can be done utilizing a combination of oncologic and plastic surgery (oncoplastic) to enhance cosmetic outcome. Accelerated breast irradiation can decrease treatment times from six weeks to three weeks or even five days.

For those patients requiring mastectomy, I can discuss both skin-sparing and nipple-sparing options. There have been improvements in the techniques for breast reconstruction too, both for implants and methods using the patient’s own tissue.

Genetic testing for an inherited predisposition to breast cancer is now much more available. Those results can alter the surgical treatment chosen, and lead to the identification of family members who are at high risk.

Our goal should be fewer surprises. So that when I am asked “What can I expect as a survivor?” I can say to the woman in front of me that breast cancer treatment has fewer side effects, improved outcomes and better cosmetic results than over two decades ago. And that provides both hope and healing for her breast cancer journey.

~ Diane Radford, MD, FACS, FRCSEd ~

The Tale of Two Bettys

I often speak at events where there are many breast cancer survivors. Sometimes I talk about what I call “The Tale of Two Bettys.” The first story is about Betty Ford. In the pre-Internet days, we had a lot of censored news. As late as the 1970s, discussions about cancer were not common and so it was a bit shocking when an NBC news correspondent announced to the world on September 30, 1974 that the president’s wife had just undergone a mastectomy. In a televised report, she said, “The terror that women feel about breast cancer is not unreasonable. What is unreasonable is that women still turn their terror inward.”

I agree with those comments in the historical context, but they were made nearly four decades ago — that’s a long time. Since then, there is a lot of new research on breast cancer that has markedly improved survival rates. So today, I would modify those comments and put the terror in perspective by saying that nearly every woman with early stage breast cancer has an excellent prognosis. And, even for women with late stage breast cancer, the treatments have improved considerably over the past half-century. They will continue to improve in your lifetime. As discouraging as a breast cancer diagnosis is, it’s important to know that medically speaking, there is a lot of really good news about how to treat this diagnosis.

The second Betty story is about NBC news correspondent, Betty Rollin. This Betty was about the same age that I was when she was diagnosed with breast cancer in 1975. At that time, cancer was still “in the closet” and few people talked or wrote about it. On the heels of Betty Ford, Betty Rollin was determined to “out” cancer. She wrote a famous cancer memoir titled First, You Cry that became a bestseller and was later made into a movie starring Mary Tyler Moore.

In 1984, Betty Rollin was diagnosed with breast cancer a second time. In a new edition of First, You Cry that was published in 2000, she opens the book with these comments, “They don’t make cards for cancer anniversaries. Not even for the twenty-fifth. That’s okay. I don’t need anyone else to tell me something nice has happened.”

Reflections from a Long-Term Survivor

I am not quite sure when I actually began referring to myself as a “survivor” of breast cancer. I believe it was at the moment of diagnosis. I remember being optimistic that whatever was ahead of me was something I could conquer. Having hit my 20-year mark this year has provided me with the opportunity to reflect on my journey with this disease and how it altered my life.

I’ve actually been diagnosed twice — the first time in my thirties and then in the opposite breast at the age of 40. Though I’ve had to forfeit some body parts to this disease (both my breasts, much of my hair and all of my reproductive system), it did not take away my soul, my spirit or my sense of humor.

Today when I say that I’m a 20-year breast cancer survivor, it usually is in an exam room with a newly diagnosed patient. You see, after my second round with this disease I decided that God was giving me a message and I transferred from my former nursing position and became the director of the Breast Center team at Johns Hopkins. I regularly meet with newly diagnosed women who appear shell shocked and frightened. I can see their fear begin to dissipate when they hear that 20 years ago I sat in the same exam room (or a nearby one) and am doing well now. I assure them I will be at their side, and that in the future I hope that they, too, will be able to “pay it forward” and reach out to a newly diagnosed woman who is relieved to see a long-term survivor.

Statistically, 87% of women diagnosed with breast cancer, no matter what their stage of disease, will become a long-term survivor like me. Perhaps not all will reach their 20-year anniversary, but most will go well beyond their five-year mark.

And in becoming a survivor, I believe we have a tremendous opportunity to help others who end up “wearing our bra” in the future. We know from research studies that a breast cancer survivor supporting someone newly diagnosed helps both the shell-shocked woman and also the survivor herself.

I would be remiss if I didn’t mention the often “forgotten survivors”; these are women with metastatic breast cancer (Stage 4 disease). They will always be in treatment of some kind. Ideally, they will find a way to live in harmony with their disease that is being treated as a chronic illness. Treatments will improve over time. For some survivors, it may be frightening to reach out to women with Stage 4 breast cancer, because of their own fear of this diagnosis. However, there is a tremendous need to reach out to these women as their challenges are difficult and they need our support.

There are three million breast cancer survivors alive today. Every three minutes someone joins our ranks as a newly diagnosed “survivor.” (Remember, an individual is considered a survivor from the moment of diagnosis.) If you are one of them, talk to long-term survivors who are supportive and encouraging. Some day, I hope that you will say to a shell-shocked woman, “I had breast cancer twenty years ago, and I was scared, too.”

~ Lillie D. Shockney, RN, BS, MAS ~
Director, Johns Hopkins Avon Foundation
Breast Center & Cancer Survivorship Programs

An Infusion of Hope

You may be wondering, “What can I do to help myself?” Or, if you are supporting someone with a cancer diagnosis, you may be thinking about how you can best help her. The fact that you are reading this book means that you are already doing things that will help you or someone you care about. Of course there are some other things that will help as well. Throughout this book, I’ll share many tips about what may help both physically and emotionally during and after treatment for breast cancer.

With every book that I write about cancer, it is my goal to offer readers an infusion of hope coupled with a dose of resilience. As every cancer survivor knows, hope and resilience are important traveling companions during this difficult journey. One of the best ways to encourage resilience and sustain hope is to hear positive messages from other survivors.

A good thing to remember is that sometimes family members, friends, co-workers and other survivors will not know what to say. They may tell you stories about other people’s cancer diagnoses that make you feel stressed and worried. If you can, gently shift the conversation and let them know that you have heard plenty of bad news about cancer, and right now you are focusing on getting good advice from your doctors and having your loved ones support you with positive messages. Your brain needs to be fed messages of hope and resilience in order to keep these traveling companions nearby.

This is why reading a Chicken Soup for the Soul book is such a good idea! Consciously and subconsciously, these hopeful messages will help you during upcoming difficult and stressful times.

What to Do After a New Breast Cancer Diagnosis

1. Find doctors that you trust.

2. Reach out to friends for emotional support, not medical advice.

3. Reach out to doctors for medical advice, not emotional support.

4. Keep a written log of every phone call and appointment — include the names and contact information of everyone you speak to.

5. Gather your medical information including laboratory, imaging, and biopsy reports. Also get copies of the actual films and pathology slides to bring to your initial appointments with oncologists.

6. Avoid drinking alcohol as much as possible.

7. Exercise. Get a pedometer and try to take at least 10,000 steps each day.

8. Sleep as well as you can. If you can’t sleep, talk to your doctor about this.

9. Obtain a copy of the book that I edited for the American Cancer Society titled What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope. This book includes hundreds of really helpful tips from cancer survivors — it is the book I wish I had been able to have on my nightstand when I was going through treatment. What Helped Get Me Through is available in most hospitals and cancer centers (patient resource library). You can also find copies at the local community library or order one from an online bookseller such as Amazon.com.

10. Remember that there are more than 12 million cancer survivors in the United States, and the vast majority of them were not diagnosed at the earliest possible stage. There are excellent cancer treatments available and many reasons to maintain hope.

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