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A young Duluth cancer survivor shares her story

I was 30 years old when I found a large, painful lump in my breast. I went to see my doctor and she said, "You're too young to have cancer." When she felt the lump she reassuringly told me, "This is not cancer. You have fibrocystic changes." Fibr...

I was 30 years old when I found a large, painful lump in my breast. I went to see my doctor and she said, "You're too young to have cancer." When she felt the lump she reassuringly told me, "This is not cancer. You have fibrocystic changes." Fibrocystic changes are common benign lumps in breast tissue. For treatment my doctor told me to lower my caffeine intake and take some Vitamin E supplements.

I went home from my appointment and did exactly as the doctor prescribed. No caffeine made mornings pretty difficult with my 5-year-old son and 6-year-old daughter. Unfortunately, the lump never went away. It changed a little during my menstrual cycle, but it was still there exactly one year later when I went to see my doctor for my annual checkup. I told her the lump was still there and she seemed bothered that she hadn't taken better notes the year before. Still, she reassured me that it was not cancer.

A little over a week later I was taking a shower and felt a large swollen lump in my armpit. I knew that it was an inflamed lymph node. I immediately got an appointment with a doctor to have a needle biopsy. As soon as I went to see this new doctor I knew I was in trouble. She was visibly upset when I told her what my doctor had said to me. She said: "Fibrocystic changes happen in both breasts like mirror images. Yours is only in one." She couldn't believe I hadn't had any testing. Within minutes I found out I had breast cancer. And it wasn't just in my breast. It was in the lymph node under my arm.

I was 31. I had no family history of breast cancer. I had no risk factors. I ate right, exercised every day and did not smoke. We were only two weeks into summer vacation 1999. I spent the next week dazed and rushing to appointments with a surgeon, an oncologist and a radiation oncologist. Every single person I met wondered why I hadn't been diagnosed sooner. From the looks on their faces, I felt like I had already died.

I had my surgery after the Fourth of July. Beforehand, I remember sitting on the grass with friends, looking at the colors exploding across the sky and crying for all of the easy enjoyment that I would never have again. I checked into the hospital for a Modified Radical Mastectomy. Once the cancer was removed, I learned that my tumor was 5.5 cms in size and I had three lymph nodes that tested positive for cancer. In breast cancer terminology, I was branded Stage 3, which is just one step away from incurable.

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I remember that I held myself together in the waiting room before surgery. But when I was in the pre-op room, I began to cry. Hard. I remember that it took me awhile to fall asleep, and I remember that I woke up sobbing. There is a special place in heaven for the recovery room nurse who soothed me during my semi-conscious sadness.

If I was sad while I was half-asleep, you couldn't tell after I'd woken up. I felt elated. I was so happy that the cancer was out of me that I was smiling and laughing. I was in such good spirits that after the first day the nurses came into my room and said: "You seem to be doing so well. Would you mind talking to another woman who isn't doing as well?"

That is how I met the only other young woman I would know with breast cancer. Bonnita had found her lump when she was breast-feeding her 6-month-old son. Like me, she was 31. She was married and had three kids, including the baby. Unlike me, Bonnita was black and I would soon learn that breast cancer is often more aggressive in black women. By then we both knew that breast cancer was more aggressive and more deadly in young women. Bonnita and I talked on the phone all the time, all the way through treatment and beyond. She would always comment that my positive energy was going to save me. I think she believed she was going to die. I am overjoyed to say that she was wrong and is alive and happy in Texas.

Overall, I had eight treatments of chemotherapy, lost all of my hair including my eyelashes, had one of the lowest white blood cell counts in the cancer ward, received shots from my husband every morning to boost my white cell count, suffered with tremendous bone pain due to the shots, had a couple more minor surgeries, and went through 36 harrowing rounds of radiation treatment during which I suffered from escalating panic attacks.

I remained positive that, though my chances at long-term survival were about 50/50, I had always been "above average" and therefore had nothing to worry about. I kept active, my hair grew back, and I worked to regain the strength in my arm. My family started to laugh again and eventually, cancer was not the first thing that came into my mind when I woke up in the morning. A couple of years after my cancer diagnosis, I discovered a Web site for the Young Survival Coalition. I was overwhelmed by the fact that there were women all over the world who had breast cancer just like me. They were young (some still in their teens), and they were bright, lively, enthusiastic and strong. It was truly like regaining consciousness. There were thousands of women I could talk with over the Internet who had been told: "You are too young to have cancer." And the best part was that they were fighting back by educating people: medical professionals, breast cancer advocates, young women and drug companies. Those women were taking the senselessness of being diagnosed with breast cancer and turning it into a tool to teach others about the risks associated with getting breast cancer as a young woman.

In 2002, we moved to Duluth. Shortly after moving here I met another young breast cancer survivor. We had both come to know the Young Survival Coalition and she had actually been to the Annual Conference for Young Women Affected by Breast Cancer. It wasn't long before we decided that we needed a group here in Duluth. I had met three more young women with breast cancer in my first year of living here. We started out by meeting once a month at At Sara's Table, a restaurant in the Chester Park area. We would meet after dinner and order a beer or pie a la mode and talk about treatment, infertility, fear and baldness.

In early 2003, I was diagnosed with a recurrence of my breast cancer. It had grown back under my arm around a surgical staple that marked where the large lymph node had been. I had more surgery, telling the surgeon beforehand to cut off my arm if he had to, in order to make sure that the cancer was gone. I was very lucky. After many tests including bone scans, PET scans, and CAT scans, no evidence of cancer having spread anywhere else in my body was found. I was elated to be given yet another chance at life, but incredibly depressed to find myself unable to free myself from the specter of the disease forever. I found that I needed, and was getting, more out of the support meetings than the women who were coming, looking to me for help.

There weren't a lot of people coming to those meetings, and after a while, I knew we needed to work harder and make the group a legitimate part of the local breast cancer community if we were going to keep it alive. Around that time in response to repeated inquiries, I was contacted by the Young Survival Coalition's affiliate manager about starting a YSC group here. She offered us the tools we needed to get our group going. We started delivering brochures to both St. Mary's and St. Luke's hospitals. Later, we began regular scheduled "Connections Meetings" at the Duluth Clinic Cancer Center in the Caring Ways Resource Center.

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It has been almost two years since we became an affiliate of the Young Survival Coalition. In that time we have worked to raise awareness about breast cancer in young women, advocated on behalf of young breast cancer patients in our community, and we have raised money through a variety of fundraisers to implement some very special programs. We continue to meet with women every month who have been newly diagnosed, are just finding the need for an outlet for there experience, or who return regularly to help others with their knowledge and experience of the breast cancer journey. The largest program we have planned is the Newly Diagnosed Kit Program. We have raised the funds to provide a kit full of educational and support materials to every newly diagnosed young woman within the entire St. Luke's and SMDC hospital systems. Besides these kits, we are pleased to be able to provide two scholarships to the Annual Conference for Young Women Affected by Breast Cancer. Our scholarships are named for one of our first Duluth YSC members, Tricia Schaefer, who died this past December at the age of 34 from metastatic breast cancer. Each year hundreds of young breast cancer survivors attend the Conference to learn about new medical treatments, diagnostic tools, longevity issues and infertility treatments. Even with all of these wonderful opportunities, in my mind the most important reason to go to the conference is the powerful feeling each woman must get when she walks into the ballroom and learns that she is not alone.

Alane Davis is chairwoman of Young Survival Coalition -- Duluth Community Volunteer Group. You can reach her at yscduluthcvg@youngsurvival.org and visit the national group's Web site at www.youngsurvival.org .

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