JOANN KALOGIANIS SPANEAS
Pictured above in the green dress, I was 30, celebrating my first child’s 2nd birthday in August of 2000 while we were away on vacation. Life was good. Four months later, I was diagnosed with Breast Cancer.
My husband at the time and I were hoping to have a second baby the following year. That autumn, a relative of my husband's in her 60’s was diagnosed with breast cancer. When she told me the news, she kept telling me to get a mammogram, just to be safe. I had recently turned 31, and it is certainly not the norm to have a mammogram at that age. However, my paternal grandmother had died of breast cancer when she was 54; she died when my father was just 9 years old. Therefore, I had some family history of breast cancer, yet none of my doctors had ever talked about doing any testing. I decided to heed the suggestion of my husband's relative; I saw my doctor; bucked the norm and asked for a mammogram at 31. My doctor said my insurance company would likely give her flack because of my age, but she said she would do it. This doctor actually saved my life. My mammogram was booked for March of 2001.
Part of my nature is to make things happen when I want them to be accomplished. I wanted to be pregnant by March, not waiting for a mammogram appointment. Therefore, I called the mammography center multiple times for an earlier appointment, and found a cancellation for a mammogram on December 22, 2000; I booked the appointment.
Expecting nothing bad to happen, I went to the hospital alone that day. I vividly remember the radiologist coming out of the x-ray reading room, asking me why I was there. I told him I had some family history of breast cancer, and was there to get a baseline mammogram for my file before I embarked on another pregnancy. He then told me the hair was standing up on the back of his neck, that 3 days before Christmas, I came in and found that I had breast cancer. I was STUNNED; my world turned upside down in that moment. He proceeded to show me the mere 4mm cluster of “pleomorphic” calcifications on my x-ray that were the telltale sign of cancer cells in that spot. It was not palpable to the touch, nor would it have been for YEARS. I was ever blessed to have caught it early.
The cancer team at this hospital met with me a few days later and dictated their recommendation without involving me in any discussion or explaining the odds of different outcomes considering my age; they just told me what to do: a lumpectomy in 10 days, followed by a course of radiation. I was not given any other options. I spoke up, and said "hold on", and told them I would not be rushed into signing up for what they suggested because I leave no stone unturned when faced with a decision as large as this. I subsequently decided to leave this hospital and pursue the matter in Boston.
As the next medical steps took time to schedule, the holidays that year were filled with worry, having no idea how badly I had cancer. I tried to enjoy Christmastime with my 2 year old, but could only think of surviving my cancer, and prayed that I would get to see him grow up. Mid January arrived and I went in for my needle core biopsy, where they lay you face down in a machine and drive a sample corer, the diameter of a pencil, into your cancer site; it oscillates, cutting samples while inserted in your breast. After waiting 14 long days, they called me with the results; I was driving. I pulled over as they told me they took extra time to review my pathology because of my age, and wanted to be sure of the diagnosis. I heard the confirmation: the cells were cancerous. They were intermediate to high grade, which are the nasty type that like to spread to other parts of your body; the type of cancer cells that would be hard to fight. Luckily, in my case, I caught it in time before the cancer had left its original location; but, my pathology showed the cells were getting closer to spreading. Hence, I was actually extra lucky. If I had proceeded to become pregnant not knowing this cancer was within me, the hormones associated with pregnancy would have promoted it to grow, which would have advanced my cancer and risked my life further.
So, instead of becoming pregnant that spring, I found myself interviewing multiple surgeons at different hospitals in Boston, to decide on the surgeon to perform my surgery. Somewhere along the line I was told that I had time to decide what I wanted to do for my surgery, since, in most cases, the cells grow very slowly; taking years to accumulate into a palpable tumor. I was told I could take up to 3 months to decide what I wanted to do.
I read the BREAST BOOK by Susan Love cover to cover. I made copious notes and even emailed with Dr. Love herself! I armed myself with knowledge. During the interviews I conducted with the surgeons, I found a glaring difference between the male surgeons and the female surgeons. The males recommended that I keep my healthy breast (one tried to stop me so much by attempting to enlist my husband to join his side). The females surgeons would agree with my concern of a new cancer likely happening to me later on in that breast, and my wanting to avoid that from happening. I wanted to stay alive for my son.
I was already of the mind to have a mastectomy on the affected breast, since I had been connected with a network of young breast cancer survivors and patients through Dana Farber's One to One program. I found myself immersed in a new world filled with young women with breast cancer, some of them mothers, and some of them literally fighting for their lives. I began to realize every day of the week there is a whole world out there of young women braving cancer, many with little ones in tow. I was grateful to hear their stories, and feel their support and their pain at the same time. Out of this networking, I decided I wanted to have a bilateral mastectomy (both sides) and reconstruction with implants. I found the one surgeon who supported my decision fully, Dr. Carolyn Kaylin, who was the director of the breast center at Brigham and Women’s.
Renown Dr. Kaylin herself, a few years later, survived young aged breast cancer, but passed away from a primary brain tumor (unrelated to her breast cancer).
On the morning of my surgery on April 2, 2001, I had my husband take a few polaroid pictures of my naked chest; a memento that I could keep tucked in a drawer, that I have looked at maybe four times in all these years, but keep it still. How I had loved being able to nurse my first born with these breasts; but would never nurse again. Preemptively, I had pre-mourned the loss of my breasts by working with Peggy Huggleston, well-known Boston author of the book, Prepare for Surgery and Heal Faster. I met with Peggy a few times, and she wisely encouraged me to write a goodbye letter to my breasts and outpour all my thanks and emotions in that letter; the letter remains sealed in an envelope all these years. This enabled me to walk into my surgery with closure, and ready for what lay ahead for my body.
I had opted to have a Sentinel Node Biopsy during my surgery, where they use a geiger counter to trace radioactive dye to your lymph nodes coming from your breast; they locate the Sentinel (first) node and a few around it, remove them during surgery to determine if any cancer had flowed there. To this day, I remain, there is nothing more painful than having a long needle of dye injected directly into your areola multiple times (with no numbing medicine, as it negatively affects the test). In contrast, a mastectomy is less painful than it sounds, because your nerves are cut with the procedure, so your breast/chest region is actually pretty numb for weeks, months, sometimes years, and in some areas, permanently.
With a picture of my 2 year old son taped to my walkman, while under anesthesia, I listened to Peggy Huddleston’s book Prepare for Surgery and Heal Faster on tape, over and over. I successfully made it through my 6 hour surgery, where my breast cancer surgeon removed both of my breasts. Then, the plastic surgeon came in and did his work: step 1 of my reconstruction; setting in the implant expanders under my pectoral muscle that I would need to see him for every few weeks thereafter to inject saline into the fill ports to “grow” a breast mounds on my chest. Months later, I went in for my finishing reconstructive surgery, where two regular implants were installed, and I felt put back together again. I have NO regrets for the surgery that I chose to have. Despite my having a gloriously persistent, long pink scar on each breast, I do not even see this as a negative; I have wholly accepted my new breasts, and feel as good about my body as if they were still real.
(A side note, all three survivors on this page .. myself, Kasha and Judy .. had the SAME reconstructive plastic surgeon, years apart; he just retired spring of 2020!)
Having removed both breasts put me in a very safe position to have more children (I went on to have two more), despite initially being nervous if any cancer was lurking in my body that could become troublesome for me. My breast surgeon knew of my ongoing concern, and one day called me out of the blue. She encouraged me there was a very minimal chance of recurrence, and that I should proceed to have more children if I wanted to; my surgeon’s caring phone call made a huge difference in my life. The next year, I became pregnant with my second child; I asked God to give me a sign that I made the right choice to become pregnant post-cancer and that I would remain healthy. My daughter was born two weeks early, at 1:31 AM on Christmas morning. I was given my sign. This Christmas was a joyous time with my family, and a time when my life moved forward into feeling normal again.
Some takeaways: Follow your instinct if you feel you should have a thorough breast exam including a mammogram, ultrasound or MRI. Seek a breast specialist at a breast center if you have any questions or concerns (primary care doctors and gynecologists are not thoroughly trained in breast cancer, let alone, young breast cancer). Do not take no for an answer if you want to have a test (in my case, two of my subsequent primary care doctors (who I did not stay with) admitted they would NOT have granted my request for a mammogram at 31 (just think how their view could have altered my life for the worse). I learned from a genetics specialist at Dana Farber that family history on the paternal side matters just as much as the maternal side (many non-breast cancer doctors are of the misnomer that paternal breast cancer history is irrelevant, and partly the reason why none of them had urged me to get tested early.) If you have any family history of breast cancer, seek the advice of a breast specialist at least 10 years earlier than the age your close relative was diagnosed. Finally, never, ever feel any less of a woman if you need to have surgery to remove your breasts.
According to the Susan B. Komen Foundation, in the U.S. alone, hundreds of thousands of women, many of them very young women, are diagnosed with breast cancer every year. As a breast cancer SURVIVOR nearly 20 years later, I am living proof that every advancement in medicine makes a difference for survival. I am ever grateful for our medical caregivers, and for the Susan B. Komen Foundation for supporting breast cancer survival.
Donate to Susan B. Komen and Land and Sea Real Estate will match all donations made in October.
I really don’t have time for any of this.” This was my response to the doctor after he told me that the biopsy I had the week prior confirmed it was cancer. I was 26, planning the wedding of my dreams. I had found the lump in the shower the same day we took our engagement photos. I should also mention that, to prepare for these photos, I spent the week prior relaxing in Cape Cod, getting sun-kissed. So when I felt the lump, cancer was not really a concern. I felt better than ever. My now almost 4 year old daughter, Alexa, was 8 months at the time of my diagnosis, and I was working full-time and taking care of her. So I stand by what I said: I didn’t have time for any of this.
Time is a funny thing, especially when you get the chance to look back. The weeks following my diagnosis seemed to go on forever, yet today I categorize them into three parts. Part One: the initial biopsy, the dreadful results, a second biopsy, 2 MRI’s, double mastectomy and a lymph node dissection. Part Two: 12 weeks of chemo, reconstruction surgery and 40 weekly visits for my adjuvant infusion. Part Three: happily ever after.
It wasn’t always so simple. I am fortunate to describe it in that way because I survived to tell you my story. When I was first diagnosed, I was annoyed, scared, and resentful. After braving my double mastectomy I thought the worst was over, so when I was given a 52 week treatment plan afterwards, I was defeated beyond belief. To make matters worse, that same day I was told I would probably be bald on my wedding day. Awesome. Piece by piece, so much was being taking away from me. But not everything. Soon after this notice, I was given the opportunity to be the first patient to try the new cold cap therapy at Dana Farber. It prevents you from losing your hair with the use of cold gel flowing through a cap that you wear on your head. By constricting the blood vessels, the chemotherapy is less likely to reach hair follicles, thus prevents hair loss. It is not a 100% guarantee, but I was grasping onto every bit of hope and really used this opportunity to take my prognosis into my own hands. I researched for weeks prior to and throughout my treatments for tips and tricks to cold capping, and I became a part of a community of women who had experienced this journey. In the end, I saved 75 % of my hair and had the long locks I imagined on my wedding day.
Having the opportunity to save my hair really empowered me to take charge of my prognosis, and I started to adopt a positive mindset. I realized that being annoyed and resentful only fueled the fear and anxiety. I faced each treatment head-on, and when it was terrible I told myself, “another one down.” With the support of my fiancé, family, and friends I was able to take back some of the control I felt was taken from me.
Today, I am so thankful for the experience; at 26, I was given the opportunity to learn that life really is so precious, and the only way to get through it is to appreciate every moment and to take care of yourself and your loved ones along the way.