Every woman lives her life in fear of the mammogram that comes back with an abnormality. In my case, that abnormal mammogram led to an MRI-guided biopsy and a diagnosis of Pseudoangiomatous Stromal Hyperplasia (PASH), an uncommon breast disease. Though benign, PASH tumors can mimic or obscure cancerous growths.
I had a lumpectomy and another biopsy that resulted in the discovery of an additional tumor, leaving no opportunity for reconstruction due to a high risk of tumor reoccurrence.
Because PASH is not breast cancer, doctors do not recommend mastectomy and insurance companies do not pay for mastectomy, so I continually live in fear of future developments.
During a visit to the breast center, while waiting outside of the mammogram exam room, I imagined the emotional pain of the other women there. On their faces was apprehension and fear. Whether it is your first experience with breast disease, or your last, you will always relive the terror of the day you were diagnosed. As I write, I’m dreading the results of my upcoming mammogram and MRI that will tell if another disfiguring surgery is in my future. Thankfully, I am not yet a breast cancer patient, though I feel a part of the tribe of “women warriors” I so identify with.
Before PASH, I was a confidant, 60 year old woman with a career as a fashion, glamour, and artist’s figure model. I couldn’t have imagined how this disease would destroy my confidence and joy. The disfigurement and emotional pain made me depressed and disconnected from the body that I was once so comfortable in.
With no chance for reconstruction, I had to manage the problem of one breast being a cup size smaller, and lacking in weight compared to the other breast. I was in a quandary, since my disease would be ongoing, with no insight of how much more tissue loss there might be. A prosthetic was not an option, since my breast would continue to change with future surgeries. I used a bra pad that was stiff, uncomfortable, and did not allow my clothes to fit properly. Often, I would stand in front of the mirror and cry, grieving the loss of my femininity and strength. I felt helpless and unattractive, even though my partner told me that he did not see the changes. He only saw the woman that he knew before surgery.
After two years of suffering this malady, my boyfriend noticed a mastectomy store had opened in Venice and he encouraged me to go in. I argued that I had not undergone a mastectomy, and a visit there might fuel more disappointment. Months later, I summoned the courage to walk into the store. It was at Beauty Plus (941-218-4163) that I met Charlene. She was compassionate and concerned as I described the dilemma of my disease. She introduced me to a product that had recently come on the market. It is a prosthetic breast that has a pocket in the back to stuff with poly fiber in the amount needed to fill any size void. Finally, an answer to my prayers!
Charlene spent much time fitting me with the right bras to make me feel beautiful and confident again. It is exciting to see myself in the mirror in a lacey, feminine, bra that gives me balance and cleavage. No more tears.
Still, I am reminded nightly, when I tuck my synthetic breast into its “cradle” that my dilemma is not over, but this time I will be ready!
It has been a long, lonely journey on this road with PASH, and no one to turn to for support. My experience with an American Cancer Society Volunteer turned into a travesty when my diagnosis was not cancer, though still terrifying to me. Her reply when I phoned with my results was “You aren’t very interested in good news are you?” She then told me that I was no longer a candidate for the breast cancer support group in my area. So I am spreading awareness, and reaching out to others, in hopes that I might help someone else in my situation.
Nancy Taylor is the author of “FACE THE FEAR TOUR….Finding Your Inner Strength Through Troubled Times,” a book documenting her cross-country motorcycle tour. It can be purchased at: www.gofundme.com-facethefeartour or by calling 941-350-6491.