Personal Stories

Barbara's Story

At the age of 54, I was diagnosed with breast cancer in my right breast. My cancer, DCIS plus a small invasion, was discovered by mammogram. I had an excisional biopsy, then a wide excision to get clean margins. However, the margins didn't come back clean. My breast surgeon suggested trying a second wide excision, but warned me that if clean margins still weren't obtained, I'd be facing a mastectomy. I had to wait several weeks between surgeries and during that time I tried to mentally prepare myself for the possibility of a mastectomy. I was quite sure I didn't want reconstruction. I've always favored a natural approach to things and didn't think I'd be comfortable with a reconstructed ("artificial") breast. As it turned out, clean margins were obtained, so I kept my breast and followed up with radiation.

Three years later, I was diagnosed with DCIS in my left breast, again by mammogram. This time, the DCIS was very extensive and two wide excisions didn't result in clean margins. A mastectomy was recommended. Given that this was my second diagnosis of cancer, I felt uneasy about what might be going on in my already-treated right breast, so I decided to have a bilateral mastectomy. My doctors supported this decision. I briefly considered reconstruction and even visited a plastic surgeon to learn about my options. None of them seemed appealing. I had a gut feeling that reconstruction wasn't right for me.

I discussed the issue with my breast surgeon and she gave me very helpful advice. "If you know for sure that you want reconstruction, you should do it at the same time as the mastectomy," she said. "But, if you have any doubts, I suggest that you have the mastectomy now and postpone any decision about reconstruction until later." She went on to say that the most unhappy patients she'd had were those who went ahead with immediate reconstruction even though they were ambivalent and then regretted it later.

I told my breast surgeon that I didn't want reconstruction. I also asked her to give me the best cosmetic result possible — no extra skin, symmetrical incisions. I knew that if I had unsightly folds of skin, I might get depressed about that and regret not having reconstruction. To give non-reconstruction a fair chance, I wanted to look as good as possible with no breasts. Since delayed reconstruction is almost always possible, even without skin-sparing mastectomies (where extra skin would be left), I felt confident going forward, knowing I wasn't foreclosing my options.

I had surgery in October, 2006. The surgery went well, took about four hours, and I had no complications. I stayed in the hospital overnight. I had four drains, two on each side. They were uncomfortable, but not really painful. Fortunately, they were removed after only four days. After their removal, some fluid accumulated on both sides. My surgeon said this was normal. The fluid was never painful and was gradually reabsorbed without requiring aspiration. Other than discomfort from the drains, the pain from the surgery was minimal and I was off painkillers, other than Tylenol, after a few days. About a week after surgery, I did develop extreme skin sensitivity that lasted for several weeks. This was probably due to a combination of a delayed allergic reaction to surgical tape and to regenerating nerves. During that time, I could hardly bear to have clothes against my skin. Wearing silk or satin camisoles or tees helped. Thankfully, the sensitivity died down after a few weeks. I now have no sensitivity and most of the feeling has come back to my chest and underarms.

I never worried about seeing myself naked. I had viewed pictures of women with mastectomies, so I knew what to expect. When I took my first look, shortly after surgery, I was pleasantly surprised. I appeared more petite, which I liked, and symmetrical. And, of course, I felt relieved that I had done what I could to prevent a recurrence of breast cancer.

I was helped tremendously in my journey by two people. The first was my mother-in-law, who was diagnosed with breast cancer at the age of 31. She had a single mastectomy at that time. Fifteen years later, she developed cancer in her other breast, so that breast was removed as well. A vibrant, upbeat woman, she lived life to the fullest and died at 82, of non-breast-cancer-related causes. She became a pioneer in the field of breast cancer during the 1970's when, working with Dr. Irv Yalom at Stanford University, she started the first post-mastectomy support groups. Because of her life and work, the idea of mastectomy wasn't new and frightening to me, or to my husband and two sons, who supported my decision not to have reconstruction.

I was also helped by a woman I met shortly before my surgery. She'd had a bilateral mastectomy eight years earlier. At that time, she had wanted immediate reconstruction but, due to medical concerns, was told she'd have to wait for a year. Six months after her mastectomy surgery, she realized that she felt very comfortable without reconstruction and had no desire to pursue it. She took a somewhat unorthodox approach to prostheses, having found unweighted foam forms to be the most comfortable option for her. An attractive and beautifully-dressed woman, she conveyed a real joie de vivre. I never would have guessed she didn't have breasts. Her positive attitude inspired me and convinced me that I, too, could live happily without breasts. And her creative approach to finding what worked for her, rather than simply accepting the conventional belief that silicone breast forms are best, encouraged me to explore post-mastectomy options with an open mind.

Before my surgery, I expected that I would quickly figure out what worked for me in terms of breast forms, clothing, and bathing suits. It turned out that finding good solutions involved more trial and error than I expected. And I'm continuing to learn about new options every day. But now that I'm fully healed, I feel confident in clothes and happy to be breast-free.