Meet Mary Killian. Her story hits so very close to home as we were both new moms when we were diagnosed. But, what I love about Mary’s journey is that it truly does give me – and I hope all of you – the belief that long term survival is possible and that there is life after a stage IV diagnoses. Read and share.
My only child, a son, was nine months old, and I was at a routine gynecologic appointment when my doctor detected my lump. I was just 30 years old and had never had a mammogram, so my doctor immediately ordered one. The mammogram revealed a 2.5cm mass in my lower right breast. I can remember lying in an examining room after the test while the radiologist did a follow-up ultrasound. All of the doctors were looking at my mammography films and the ultrasound screen and speaking in hushed tones. At the time, of course, I didn’t realize that this was all very abnormal. I was told not to worry but that I should have the lump removed due to its size. My doctor recommended a surgeon, and I went into the hospital for a lumpectomy on my fourth wedding anniversary, August 12, 1993.
During that surgery, the pathology indicated that the tumor was cancerous, and I also had 15 lymph nodes removed from under my right arm. (Sentinel node biopsy was not yet used.) When I woke up after the operation, the doctor said to me, “You have cancer, but it’s not a death sentence.” I would think of those words often as I went through treatment throughout the next year. Follow-up testing revealed that eight of those lymph nodes had tested positive for cancer and my tumor was ER/PR+. (The HER-2 test had not yet been developed.)
The following week, I had a CT Scan (no PET scan technology back then) that showed three spots on my liver. There was some initial confusion about whether these spots were metastases; a follow-up MRI and needle biopsy revealed that they were. My life’s story was about to be rewritten.
A stage IV diagnosis sounds pretty devastating, especially with an infant child. Do you remember your reaction?
My primary reactions were shock and fear. My husband and I were a young couple with growing careers. This was the furthest thing from our minds. No one in my family had breast cancer; at the time, I thought it was a disease for old people! My greatest concerns were that my son would grow up without a mother and that I would die and leave my husband with a baby to raise alone. Really, all I could think of was that I wanted to live to see my infant grow up.
I was diagnosed in 1993 and there was no internet to search and not much discussion about young women with breast cancer, let alone Stage IV breast cancer. As soon as I was able, my sister and I, went to the local book store and bought every book we could about breast cancer and its treatments. The next several weeks became a whirlwind of doctor visits and insurance coverage review. I saw five doctors in nearby Manhattan to seek their opinions and my surgeon had recommended that I meet with a young oncologist.
Even today, there isn’t a clear cut way to treat young breast cancer patients. What kind of treatment options were presented to you in 1993?
I chose to work with that young, local oncologist and met with him several weeks after my surgery to discuss my treatment. He told me that standard chemotherapy would not cure me and that I should consider a newer clinical trial that involved extremely high doses of chemotherapy culminating in an autologous bone-marrow transplant. I remember leaving his office in tears. I didn’t know much about bone marrow transplants, but I knew this treatment would be risky. My doctor had suggested several hospitals where this protocol was used but recommended Duke University Medical Center since the head of their program had developed the clinical trial. My youngest sister had worked as a nurse at Duke and encouraged me to have my treatment done there as well.
Almost one month to the day from my lumpectomy, I was admitted to the North Carolina hospital for the first of five cycles of high dose Adriamycin, 5FU and Methotrexate. The following three cycles were completed in New Jersey under the supervision of my local oncologist. Blood work, Neupogen shots and anti-nausea meds were the norm. My hair fell out in clumps and the hand and mouth sores were debilitating.
In early 1994, I traveled back to Duke where I was admitted to the hospital for continuous intravenous chemo. Five days later, I was released to the care of my sister who became my caregiver for the next three weeks. We lived in a local Hampton Inn and walked back and forth to an outpatient clinic for follow-up treatment. I became friends with the other women who were in treatment with me, and we were each other’s support system. Who else really understood what we were going through? I learned from that experience that there were situations that were, believe it or not, worse than mine.
On January 15, 1994 I was infused with my own bone marrow and stem cells. Then began the waiting for blood counts to rise: lots of blood work, days of nausea and vomiting from the chemo, more Neupogen, and many transfusions. In 1994 there weren’t drugs available to raise red blood cells and platelets. Twelve days after my infusion, we went back to New Jersey to continue my recovery.
The high dose chemo cycles and a bone marrow transplant are hard to even imagine. Who cared for your little boy during all that?
During all of this treatment, I was fortunate to have the support of family and friends. My sister was able to come live with us in New Jersey during all of my chemo. She helped take care of my son and me while my husband worked. My husband sacrificed his career path at the time to take a less demanding job within his company so he could be around more during the week. We were the beneficiary of many home-cooked meals and free babysitting from our local friends. My company gave us a medical allowance, which we used for travel expenses and to rent two apartments in North Carolina during my treatment. My husband and other family stayed in those apartments during my three weeks in North Carolina and shared responsibility for childcare.
Throughout my treatment, I met with a psychologist on a weekly basis when I could. While I was never really a “why me?” cancer patient, it was often so hard being in a situation where no one really understood what I was going through. I tried local support groups, but most of the women were much older than I was and I felt that I really couldn’t relate to them.
One of the most difficult things for me was not being able to see my son during the time that my immune system was the most compromised. My family would bring him to the hotel where I recovered, and I would discreetly watch him run around outside from a window in the hotel lobby with tears in my eyes. Seeing him gave me the strength to keep fighting, but it was also very difficult for me because I wasn’t able to care for him. I prayed every day that I would live to see him reach his 18th birthday and graduate from high school.
I can absolutely relate. What happened after the bone marrow transplant?
After recuperating from the BMT, I had six weeks of radiation, beginning in May, 1994. That summer, my husband and I traveled to Bermuda, where we had honeymooned, to celebrate our fifth anniversary. My hair had just begun to regrow.
I also began taking Tamoxifen. The normal course of Tamoxifen treatment was five years at the time. Since there was limited long-term survival data on young Stage IV patients (I was a guinea pig, I think!), my doctor suggested that I remain on this drug for as long as it was keeping me in remission. I took Tamoxifen for fourteen years. At that time, research indicated a possible reverse effect so I ended that treatment. Interestingly, Tamoxifen treatment is now recommended for ten years.
Four years after my original treatment, it was recommended that I not have any more biological children due to the increased risk of recurrence and was told I should have a prophylactic oophorectomy to remove most of the remaining estrogen from my body. I grappled with fertility loss at that time. While it was difficult to see many of my friends have two and three children, my focus needed to remain on my health and staying alive to raise my young son. I was willing to do what it took to remain disease-free. Early menopause was a struggle, both physically and emotionally, as I couldn’t (and still can’t) take hormone replacement.
How has having breast cancer affected your wellness today?
Fortunately, I am in generally good health. I am able walk nearly four miles every weekday and have even reversed some bone-density loss by doing so. But I still deal with the long term emotional and physical effects of premature menopause and some nerve damage, hearing loss and tinnitus from the chemotherapy, as well as a compromised immune system. And sleep issues. I could write a book about that!
So, it’s been nearly 20 years since your diagnosis?
I still can’t believe it’s been twenty years. I use the date of my bone marrow reinfusion as my official anniversary date, so my 20th anniversary will take place early next year. Also, next August will be our 25th wedding anniversary, so we will mark both of these milestones in 2014! I would be lying if I said that I don’t worry about cancer anymore. Unfortunately, you hear stories about recurrences 20 or 30 years after the original diagnosis. I guess that thought will always in the back of my mind. I am grateful to have lived as long as I have.
I’ve always taken my “survivorship” one day and one year at a time. I try to look for something positive in each day; I am truly grateful. That being said, I often have “survivor’s guilt” as I know most in my situation have not had my success. I’ve lost several close friends to cancer over the last few years. It’s heartbreaking for me, and I see how devastating it is for their families.
Ironically, the “pink ribbon” breast cancer awareness campaign began shortly after my diagnosis. My family and I participated in one of the first Susan G. Komen Race for the Cures. While we are all more ‘aware’ today, I often wonder if we are really any closer to a cure?
And your little boy?
I am one of the lucky ones. I have been able to see my baby son grow into a young man…an almost 21-year-old college junior and a Division 1 ice hockey player for Yale University. Four years after my diagnosis, just before my hysterectomy, we decided we wanted another child and began to navigate our adoption journey. Our love for our niece and nephew who had been adopted several years earlier made this a logical leap for us, and we were thrilled to have this option. Although the agency wanted me to be in remission for five years before we adopted, we were able to go through the pre-adoption counseling and paperwork while we waited. After three long years of hoping for a baby, we were ecstatic to receive a phone call from our adoption agency to tell us that our son’s birthparents had chosen us to parent their newborn child. Our older son was seven at the time and was thrilled to become a big brother. Our second son is now thirteen and in the eighth grade. He has a great sense of humor, loves basketball and technology, and has brought us immeasurable joy.
Do you foresee any future challenges?
I just recently had my annual oncology appointment. My blood counts remain in the normal range. I continue to be monitored for the long-term consequences of my treatment, including developing MDS and premature heart disease.
I think it’s so important to show the readers that there are young breast cancer patients living with 20+ years with no recurrences.
People often ask what I did to have such long-term survival. I wish I knew and could bottle it for other Stage IV patients. I guess I am just one of life’s miracles!
An interesting note: the Bone Marrow transplant trial that Mary underwent at Duke University was determined that it did not result in a longer disease-free period for most patients and was eventually discontinued.