"Lumpectomy or Mastectomy?"
Survivors have many similarities in our experiences with cancer, starting with the day we hear the words, “you have cancer,” to the mad unscrambling of what this means while we grapple with overwhelming treatment decisions like choosing between a lumpectomy or mastectomy. We know too well how it feels to hack through emotional ups and downs from the psychological blow we’ve been dealt, while coping with physical side effects, as we push toward recovery. For too many, this process can start all over again when there’s a recurrence.
Finding the strength to handle such a tremendous load that has befallen on us is a challenge for even the most physically fit and disciplined competitor. It’s almost a miracle that so many of us are able to call ourselves survivors.
But fight the fight we do, each in our own way with the help of our medical teams, the support of our families and for many of us, with the help of others who are fighting or have fought cancer.
My own diagnosis with breast cancer came in October of 1999, at a time when I didn’t know anyone else who had breast cancer except for my grandmother who had passed away in 1980. Thrown into the frightening morass, I felt horribly alone. Not knowing who to turn to, I fled to the library and tried to find help and solace from a stack of outdated books. There were not many books to read about breast cancer then, and the internet was not something I was familiar with ten years ago. But luckily I had a great team of doctors and with them and the support of my family I got through it.
Another thing many survivors agree upon is that cancer changed their lives. A great number of us say while we would never wish cancer on anyone, many positive things have come from our having had it. A lot of us who have such life changing experiences write books about them, which is exactly what I did in Hearing the Stream, A Survivor’s Journey into the Sisterhood.
Looking back, I’ve thought about where my idea to write the book came from. I realize that ideas don’t really come “suddenly, from out of the blue.” They arise from a combination of things—events, thoughts, and experiences from our lives. Ideas surface from things we’re not always conscious of at the time. But I’ve since traced back and figured out where the impetus for this book came from.
The first seed was of course, my diagnosis of DCIS, discovered by a routine mammogram—the second one in my life. Ductal Carcinoma In Situ, as you know is different from a diagnosis of invasive breast cancer Stage I, II III or IV. In Situ means the cancer is still confined to the milk ducts, and hasn’t yet broken out, to invade the surrounding tissues. DCIS is considered stage 0 and has a five-year relative survival rate of 100%.
I didn’t know any of this the day I got the phone call from my radiologist informing me that I had aggressive, multi-focal ductal carcinoma in situ. All I knew about breast cancer then was the suffering I’d seen my grandmother go through 23 years earlier. Grandma was diagnosed with her breast cancer in 1976 after she discovered a fairly large-sized lump. Although mammography had been around since the 60s, my grandma had never had a mammogram. But after she found the lump, her treatment began with the standard surgical procedure of that time, which was the disfiguring Halstad Radical.
She had her entire breast removed with all of its skin, underlying muscles, and most of the lymph nodes
in her armpit, leaving her with a deformed chest wall and subsequently with severe lymphedema—uncomfortable
swelling in her arm. She underwent a second Halstad Radical Mastectomy shortly after, when cancer was found in
her other breast. Back then, doctors believed that removing these surrounding tissues prevented the cancer from
spreading throughout the body, but Grandma’s cancer spread anyway. Most likely it had already entered her
bloodstream before her surgery.
I still have a photo of her from the late 70s, standing in my mother’s pink kitchen, wearing her new wig a
and smiling stoically for the camera in spite of her painfully swollen arms. There was more misery for her later when
the cancer recurred in the skin around her mastectomy scars and she underwent radiation for the new tumors.
While I was contemplating my own course of treatment in 1999, I recalled an image of her, with skin burnt black by
the radiation. The memory horrified me, as had the reality of it for my mother at the time. Mom would go over to my
grandparent’s apartment to take care of Grandma who was suffering mightily from the side effects of her
treatments. Mom would return home afterward and I’d see her break down and cry. Mom vowed, if she ever got
breast cancer, she would rent a house on a beach somewhere and live whatever time she had left there. After
seeing how Grandma had suffered, Mom didn’t want treatment of any kind.
Fortunately for me, the disfiguring Halstad Radical was no longer the standard when it was time for my
mastectomy. In 1979, the National Institute of Health deemed a modified radical mastectomy was as effective as the
Halstad Radical. I read that in a book I checked out from the library, shortly after receiving my diagnosis. I’d brought
home all the books they had on breast cancer, and devoured each one even though only a couple were new. One
was written by the former NBC News Correspondent, Betty Rollin, called First you Cry. It was published in
1976. Another was How am I going to find a Man if I’m Dead, written by Fanny Gaynes, and published in 1994. A third
one was brand new, published in 1999, called Her2, The Making of Herceptin, which is about the discovery of the
protein that is expressed in some breast cancer tumors and is a very aggressive form of the disease. As unsettling
as I found these books, as soon as I finished one I picked up another and read the whole thing including Dr.Susan
Love’s Breast Book, which was over six hundred pages.
So I began my journey armed with a bus load of information and grim stories. I was scared crazy, but thankful
that I wasn’t going to have to lose any of my chest muscles like grandma had. I was equally thankful when it was
determined later that I wouldn’t need chemotherapy or radiation. Grateful for the early detection of my DCIS by
mammography, and the fact that the Halstad Radical was no longer necessary, I felt bad that this reckoning had
come too late for Grandma. Even though I’d been more fortunate than Grandma, I knew if Mom had been alive when
I had been grappling with my treatment decisions she would have been doubly heartsick.
I chose a mastectomy for my multifocal DCIS and immediate reconstruction. I had the LAT Flap procedure, in which
my plastic surgeon cut the latisimus dorsi muscle from my back, and tunneled it under my axilla and around to my
front, where she sewed it onto my chest. Underneath she inserted a saline implant, the same size of my breast
which was removed. I went to sleep with two breasts and I woke up from surgery with two breasts.
I’d escaped the psychological blow to my femininity of waking up with only one breast, but still the physical
recovery was brutal. It was two months until I could go back to work and two more until I’d fully recovered my strength
and mobility, but it was worth the pain and struggle. That was the extent of my breast cancer treatment. And I knew I’d
been lucky—a whole lot luckier than my poor grandma.
The following year, in November of 2000, one year after my diagnosis, having gone through my treatment and
recovery virtually alone, I went to the American Cancer Society to participate in their Reach to Recovery training. There
I met a room full of other women—who were just like me. All of them were breast cancer survivors. That day I heard
each of their stories, and from them I realized we were all very much alike in what we had been through, still each
one had a unique experience and story to tell. Breast cancer was not the same for everyone of us. We were of
different ages, our cancers had been discovered in a myriad of ways at various stages, and we had different
treatments, and distinct outcomes.
I don’t know if it was because of our similarities or our differences, but I was immediately drawn to these
women, to the organization and to the mission— of reaching out to newly diagnosed women. A couple of months
later, I also joined the Association of Breast Cancer Survivors, another group of thriving and happy women.
It was shortly after this that the idea of this book came to me. It was a combination realizations, the first one
being that my breast cancer was not the breast cancer story. Mine was only a tiny snap-shot of the picture of breast
cancer and I wanted to tell the whole breast cancer story. In order to do that I had to learn all I could and I had to meet
a lot of people. So I set out on a mission. I went to conferences and workshops. I read books and met Harriette
Grober, who had been on chemotherapy for nine years. What ultimately began to unfold for me was a rich and
powerful journey into the sisterhood of breast cancer.
Amazingly, over the next two years, four other courageous people besides Harriette Grober, including one man, allowed me into their personal lives as well. I chose these five people for their uniqueness and diversity, so as to provide a more broad and true picture of what breast cancer encompasses. Through them, my eyes were opened to the complexities of this disease. I found there was much more to breast cancer than the emotional and physical impact it has on us individually. There are historical, economic, political, and environmental layers that make it a social issue too. These layers unfolded to me most dramatically as I became friends with Harriette.
In the sisterhood we are all in one boat together, but as my friendship with Harriette developed, I found myself hanging unexpectedly onto her single raft as we sailed over and through the rapids of her harried and intense cancer journey. I was able to witness a life force that keeps people with cancer moving forward, even as options for treatment run out.
I like to say that I write books that are informative, engaging, and inspirational. This book is a testament of people’s courage, when they are faced with cancer. People who knew Harriette admired her spirit and her dogged determination, which I have tried to bring to life on these pages. I wrote this book in the hope that it brings something worthwhile to others who are dealing with cancer themselves, or for those who have friends or loved ones who are.
Book by Diane Lane Chambers
Hearing the Stream, A Survivor's Journey into the Sisterhood of Breast Cancer
Diane Lane Chambers