Gayle’s Story

In February, 1991, I was diagnosed with lobular invasive carcinoma. At the time, I was 38 years old with no family history of breast cancer and no reason to believe my life was about to change dramatically. I discovered a hard lump about the size of a small bean, just above my right breast, and I worried about it for almost three weeks before I realized it wasn't going away and I should consult a doctor. I was very apprehensive. I knew this lump might mean something was terribly wrong.

The first doctor I saw diagnosed it as a subcutaneous cyst and declared it was nothing to worry about. I was flooded with relief. She gave me a choice---leave it alone or have it surgically removed, if I was uncomfortable with it. Fortunately for me, I didn't want to have a lump on my chest, so I opted to have it removed. The biopsy report showed that it was a malignant tumour. The surgeon who removed it told me he recommended a radical mastectomy and a partial mastectomy of the unaffected breast, as a preventive measure because lobular invasive carcinoma has a higher risk of being bilateral and/or recurrent. I was shocked and numb. I left the doctor's office with very little information about the disease and no idea what I was gong to do about it. I felt like I had just been given a death sentence.

It's hard to imagine, until it happens to you, what if feels like to be told you have a malignant tumour growing inside you. I imagined the worst. I immediately pictured a black, spongy substance like mould creeping around inside me where healthy pink tissue should be instead. It was particularly hard for me to hear this diagnosis and the recommended treatment because my father and brother-in-law were having chemotherapy treatments at the time for aggressive lung and brain cancers. Their prognosis was not good and I felt mine would be just as bleak.
My husband was a blessing and the Rock of Gibraltar. Without his love and support, I know I would have been an emotional wreck. He immediately sought second opinions about treatment options and helped me get through those first few weeks of anxious decision-making. We decided to learn as much as we could about the nature of my particular kind of breast cancer. We went to the library, did some research and talked it over thoroughly before deciding what was the best course of action.

It was difficult for me because the treatment options were so disfiguring. I felt my femininity was being threatened, as much as my life. My husband reassured me that he would love me with or without breasts, but I was suspicious of such an invasive procedure and the lack of guarantee that a surgeon would even be able to remove all the breast tissue. Everything I read about survival rates and treatment options for my particular situation led me to the decision to have a modified lumpectomy and radiation. I scheduled the re-excision and removal of lymph nodes in order to "stage" the cancer since the original biopsy did not have clear margins. We wanted to be sure that the tumour had been entirely removed and see if the cancer had migrated. I began radiation treatments about a month later, after the scar tissue had healed. Chemotherapy was not recommended, but the oncologist left that choice up to me. All he could do was describe my options, explain the benefits and risk involved and leave the choice up to me. Since my tumour was not larger than 1 centimetre, I chose to decline chemotherapy. The negative side-effects of chemotherapy did not hold much appeal for me and the benefit seemed slim, just a marginal 10% boost in my statistical chance or preventing recurrence.

At the time of my treatment, our daughter was a junior in high school. I tried to keep a lot of the stress of the situation away from her because I knew she had a lot going on in her young life without having to worry that her mother might be getting seriously ill. She was told about it, or course, but I tried to keep my attitude light and breezy with her so she wouldn't be unnecessarily alarmed about it. I think it helped me to feel more positive just trying to give her the impression I was not falling apart at the seams.

Looking back, I was very fortunate, although it didn't feel like it at the time. My tumour was small, just 1 centimetre, and I had no lymph node involvement. In my case, even though it was early detection, it was "accidental detection." I had mammograms beginning at age 35 at two year intervals, but the tumour was above the area which can be filmed so it would not have been detected if it didn't present itself so close to the surface. They said lobular invasive carcinoma is usually found deep inside the breast tissue where it is more difficult to notice or feel it.
I have gradually begun to believe that I will survive this. For at least two years after my treatment, I still had doubts about cancer and read almost obsessively about recurrent cancer. My father and brother-in-law both died within two years of their cancer diagnosis and of course I read about women who die with breast cancer, but I have changed my attitude about a lot of things; about death and about health in general. I became vegetarian. I give myself a break and don't worry so much anymore about things that used to seem so important. I have a more positive outlook on life, and I don't visualize a black, insidious cancer inside me anymore. I still pay attention to my regular check-ups, but I don't obsess about them anymore.

I think I was lucky, but I was also assertive about my treatment. I didn't just let doctors tell me what to do and suffer the consequences. I was proactive and I got involved. It was the most difficult thing I've had to do, but I had a lot of support, from my husband, my daughter, my extended family and friends, even my co-workers and my boss helped to make my treatment a positive force for getting healthy again.

Realistically, I'm probably healthier today than I was ten years ago! I would encourage anyone facing the difficulty of breast cancer to reach out for the support that is available. There are a number of women's cancer resource centers and even though I didn't participate in a post-operative cancer support group, there are support groups that are right for any individual, no matter what your situation. And there are women who survive breast cancer and go on with their lives.