Personal Stories

Susan's Story

I first found a lump in my breast while doing a self exam. Since I was only 36 at the time, I had never had a mammogram. My gynecologist told me that, given my age, it was very unlikely it would be anything to worry about. The radiologist said the same thing, but after a core needle biopsy, I was told the cells were malignant. I felt my world crashing in around me. I had two young children, ages six and two. How could I possibly leave them?

I had a lumpectomy and sentinel node biopsy. After the operation, I was overjoyed to hear that all of the malignant cells were encased in the milk ducts. This is called ductal carcinoma in situ, or DCIS. Since no cancer had invaded beyond the milk ducts, I did not need to undergo chemotherapy. Radiation was recommended, but I was against the idea. My odds of survival were very good — why mess with something that might cause another kind of cancer in the future?

To help me with my decision, I sought a second opinion. The clinic I went to for the second opinion had a much stronger review process. A tumor board reviewed my slides and pathology reports and determined that I did not have wide enough clean margins, so should have more tissue removed. I went forward with this second excision.

Then, six years later, more DCIS was discovered in the same breast. After my two previous surgeries, there wasn't much breast tissue left, so I decided to have a mastectomy. Both my oncologist and my plastic surgeon assured me that I could have my breast reconstructed immediately. I never considered not having reconstruction, nor was non-reconstruction even mentioned as a viable alternative. I had a "state of the art" skin-sparing, nipple-sparing mastectomy. Reconstruction was done with a saline implant. AlloDerm (donated human tissue) was used to adequately cover the lower part of the implant not covered by my chest muscle.

Things quickly started to go wrong. My nipple turned black and then fell off. The hole where the nipple used to be wouldn't close up and yellow fluid kept leaking out of it. My breast became swollen and red. All told, I underwent seven operations, including two implant exchanges. I also needed intravenous antibiotics for an infection. My wound just wouldn't heal and fluid continued building up and leaking out of the open wound.

Finally, I decided to throw in the towel. No fake breast was worth this. For nine months, my activities had been limited. I had been in and out of the hospital too many times. Plus, the implant was very uncomfortable. I do a lot of yoga. Unlike a real breast, the implant stuck out on my chest like a softball whenever I did even a mild back bend.

It felt great to finally have the implant removed. My wound healed for the first time. I purchased a prosthesis. That first one felt heavy and uncomfortable, but I found a different one that sticks to my chest and is lighter. Now, I don't even notice that I'm wearing a prosthesis. Strangely enough, it feels more like a part of my body than the implant ever did. Best of all, I'm back to my active lifestyle.

In some ways, I'm glad I went through the reconstruction process. Before my mastectomy, my breast was a very important part of my self image and my sexuality. If I hadn't tried reconstruction, perhaps I would have always wondered whether I should have done it. Of course, it would have been easier if I could have avoided those seven operations and nine months of convalescence. But I gained a valuable insight — an implant doesn't feel or look like a real breast. Moreover, since removing my implant, I've discovered that I can be happy and sexy and confident without my breast. I sometimes bemoan the limits on my wardrobe choices, particularly during the summer and for evening wear, but that's a small price to pay for being healthy and active.