My Story

We all have a story, it is my hope that you will learn something from mine. I would like to introduce myself to you. I think it is important to feel a connection to the people you encounter, so as I tell you about myself, I hope you find where you and I share some common ground.

My name is Nancy Buongiorno Clemente. I am a daughter, sister, wife, mother of two sons and mother figure to many others, an aunt, cousin, friend, healthcare professional (Occupational Therapist specializing in the hand and upper extremity), an active community member, exercise enthusiast, integrative therapies recipient, and a TWO-TIME BREAST CANCER "THRIVER"! I prefer this term instead of survivor, as I think "thriver" has a more positive connotation and I pride myself on having a positive outlook.

 Thinking back, it's October 1997, and yes it's breast cancer awareness month . . . We hear all about that through the media and we see all the merchandise in stores and online. So I thought to myself, even though there is no history of breast cancer in my family I should really do my breast self-exams more often. In December, same year, I felt a small lump on my left breast . . . well that wasn't there before! Hmmm, maybe it's a cyst. So I waited until the next month to see if any changes occured. Nope, that lump was still there. I went to see the nurse practitioner at my gynecologist's office. The mammogram showed nothing. I have dense tissue! The ultrasound showed a nodule - a cyst? A fibroadenoma? The needle biopsy was not conclusive.

 In March 1998, my cancer diagnosis was confirmed after a lumpectomy. A second excision was done because the margins were not clear. Much to everyone's surprise, two more tumors were found. In May 1998 a left mastectomy was performed on the advice of three oncologists from three different states! Yes, I did my homework. I opted for reconstruction with tissue expansion and a saline implant. Remember this was 1998 . . . silicone implants were controversial then. Also back then sentinel node biopsy was very new in my area. My surgeon had not yet done this procedure, so she and I agreed to the removal of five axillary lymph nodes for testing. The results: Stage I, multifocal, intraductal carcinoma in situ, negative nodes, ER/PR positive and borderline Her2Nu. Wow!

 The summer of 1998 was "chemo summer" for me . . . four cycles of AC. This was protocol at that time. The second stage of breast reconstruction followed in late fall and even later a small implant to my right breast was done for 'matching' to my left side. Unfortunately, I developed an infection and that implant had to be removed. The procedure was repeated three months later with success. I tried tamoxifen for almost a year, but I chose to stop it. After the chemo and surgical medications I just didn't want to put any more chemicals into my body.

 Overall, I did well. I had lots of support from family and friends as well as a strong faith in God. I eventually got back into a "normal" routine as wife and mom and occupational therapist, interspersed with my regular oncology and surgical follow-ups.

 After I got over the fear of touching my breasts again I started to do self-exams, of course on my right side, with the small implant, the non-cancer side. Now, being the curious health professional I am, I was intrigued with the way the breast tissue felt around the edges of the implant, how the scar looked and felt and with the lack of sensation in certain areas. I began to check out the left side, the mastectomy side. No one actually advised me to do this and I never read this in books. The edges of this implant felt different. So did the skin under my arm - in the axilla. I could feel the lymph nodes and other lumps and bumps. I know what scar tissue on the arm and hand feels like because of my experience as a hand therapist but, what about here? I discussed these concerns with my various doctors and was assured all was within expectations.

 Fast forward to April 2006 - eight years had passed - I went to scratch an itch and felt a small lump on the left side of my chest, my mastectomy side. Yikes! How can that be? I knew that lump was not there before because I had been doing my self-exams! At that point in my cancer career I had become an assertive patient so I suggested a biopsy after an ultrasound confirmed a 5mm mass. In May the mass was removed and the diagnosis made -- Yes, cancer again! The recommendation this time, radiation, 35 treatments and a three year course of tamoxifen. Another summer spent in cancer treatment. I received verbal and written information on the effects of radiation to the skin during the course of treatment. But as time passed, I realized I did not know what to expect beyond that. Did I really know how the radiated tissue would look or feel after many years? Did I have an increased risk of lymphedema even though eight years had passed since my diagnosis in 1998? What would be the long-term effects on my saline implant? I wanted to know! Any information I found in books, online or in seminars seemed vague. Me, the detail oriented person I am . . . I wanted to know more.

 As a person who has been on both the giving and receiving ends of healthcare, I am compelled to share the important information I feel is lacking in the area of patient education. That is . . . what to expect after breast cancer surgery and treatment including radiation - especially with regard to breast self-exam. Most women have seen monthly breast self-exam information at our doctor's office or in magazines but, my fellow cancer "thrivers", have you seen any information specific to the changes that occur after a breast cancer diagnostic procedure and/or treatment? I have seen very little . . . no real details seem to be out there.

 The treatment story doesn't stop there. In 2009 I underwent an oophorectomy and hysterectomy to prevent a third recurrence. A month after that, which included a few airplane trips, I developed lymphedema in my left forearm with axillary webbing. Months later I tried taking Femara and then Arimidex after three successful years on the Tamoxifen. That didn't last long. Not fun!

 Wow, was I getting an education on the long-term effects of living with breast cancer! As I still am. This is a life-long journey of Thrivership!