Desiree: Two Breast Cancer Diagnoses But Very Different Experiences

At the age of 38, I had my annual screening mammogram (provided by my employer to all female employees, even those under 40) and it detected changes in the calcifications in my right breast. These changes were a red flag. I was referred for a biopsy, which came back positive for breast cancer. Since I believed that breast cancer was a disease that affected only older women, I was stunned by my diagnosis. The realization that I knew very little about breast cancer was also unsettling. I wanted to be informed, find out my options to make active treatment decisions and to form a partnership with my healthcare team.

My surgeon suggested a lumpectomy to remove the cancerous tissue. I agreed to the breast conserving operation. Yet when the surrounding tissue didn't have clean margins, I had to undergo a second lumpectomy. My adjuvant therapy included radiation. Since my cancer was caught early, I decided to do a hormonal treatment since my cancer cells were hormone receptor positive. It pushed me into menopause at age 39.

I got depressed due to my premature menopause. However, I decided I had to get my mind right. I had to put things into the proper perspective. I told myself at least I was still alive to experience the hot flashes. I could enjoy my family, which at the time included my 10-year-old son and a 16-year-old daughter, as well as my husband, parents, siblings, and extended family.

As I moved through my treatment and started to rebound physically, I became more conscious of my diet, the environment and exercise. I continued to get testing and reached my five-year post-diagnosis milestone, feeling good.

Nevertheless, after 8 ½ years and six months after my annual mammogram, I felt a lump after a voice told me to check my breast. I saw my surgeon, who ordered another mammogram and an ultrasound on the same day. After the ultrasound's findings, a biopsy was performed on the same day, too. My surgeon informed me the tumor was highly suspicious. Two days later, I heard the words, "The cancer is back."

A lumpectomy was no longer an option since it had already been performed on the same breast. I had made up my mind that I wanted to have a bilateral mastectomy. I also opted for reconstruction after learning I couldn't wait till later because the procedure had to be performed during the mastectomy. Since the diagnosis occurred late in the year, and I didn't want my family to have tainted memories of the holiday season, I asked my surgeon if the operation could wait until January.

January was the start of a major episode in my life that was very different from my first experience with breast cancer. The tumor had different characteristics from my first cancer. It was clear I would need to undergo chemotherapy.

First, I had surgery, which went well. However, one week later, I woke up to my left breast being massively distended and immediately went to urgent care. I was given morphine to control the pain and had a severe allergic reaction that brought me close to death. After I recovered from that scare, I had emergency surgery to figure out what was wrong. It was discovered that a blood vessel had ruptured. The problems continued even after this surgery, when the wound opened up and continued to widen. It turned out I was suffering from necrosis as a result of dead cells left behind from the radiation done to my breast several years prior.

Unfortunately, this wasn't the end of my troubles. When it came time to start chemotherapy, I had a bad experience with an oncologist during a consultation. I believed that her proposed treatment regimen was ill advised and she wasn't open to discussing it. Dissatisfied with the meeting, I opted to find another oncologist to work with and began treatment. However, I experienced an allergic reaction to both the chemotherapy and Herceptin. My oncologist then prescribed steroids and Benadryl to manage the allergy; these drugs created insomnia. Then, if that wasn't enough, six weeks into my Herceptin regimen, I began showing signs of heart failure. My oncologist proposed I take a break from Herceptin and wait for the heart to rebound in order to complete protocol, which is 52 treatments.

There were other problems, as well, including a blood clot in my neck due to a port, which was installed due to poor veins. To address this, I went on Coumadin, which involved daily bloodwork. This was exhausting. Eventually I was switched to Lovenox, which was an injection twice a day to prevent future clots. Thereafter, I developed cataracts from long-term steroid use. I was placed on Tamoxifen. However, I developed symptoms of uterine cancer. I had to have a biopsy to remove the polyps & confirm it was caused by Tamoxifen effect.

Despite managing so many health problems associated with treating breast cancer, I dedicated myself over the last several years to helping other women. After my first breast cancer diagnosis and treatment, I formed a team for the Revlon Run/Walk that my son named, "Les Marcheurs" (which translates into "the Walkers," a pun on my last name and the group's primary activity). We participated for over ten years as one of the top ten teams raising over $375,000 during that time period. I began volunteering with the Witness Project of Harlem (WPH) to educate on breast & cervical cancer with an emphasis on early detection. For three years, I spoke at Cancer Care's annual conference on Spirituality and Cancer. Later on, I began volunteering with Survivors In Spirit (SIS) to talk about life after adjuvant therapy. I was selected to participate in a DVD SIS produced that featured six African-American women talking about their experiences with breast cancer and ASCO's guidelines for survivorship.

In 2008, I first got involved with SHARE doing outreach and facilitating ovarian cancer programs. Soon after, I began working with the Side by Side program until my recurrence. In 2011, I joined SHARE at the NYS Lobby Day in Albany, NY. As a result of that trip, I later became a member of the National Breast Cancer Coalition (NBCC) and attended my first advocacy conference and lobbied in Washington, DC. Attending NBCC's conference sparked my interest and I applied to Project LEAD and was accepted. Later in the year, I was invited to become a member of SHARE's African-American Advisory Board. In early 2012, I was asked to be an outreach coordinator for Manhattan and the Bronx as part of SHARE's Ambassador program. The program sends breast cancer survivors to speak with organizations in underserved communities to raise awareness about breast and ovarian cancers. I was also asked to facilitate a support group for women of African, African-American and Caribbean heritage.

One of my main goals is to help people realize the importance of being educated and advocating for themselves. These two things have helped me immeasurably during my breast cancer journey, which has been long and complicated. Despite the widespread marketing of the pink ribbon for breast cancer awareness, I realize many people know very little about the disease, which lends itself to the health disparities. My desire is to reduce and/or aid in the elimination of the gap.

There's a real need for education around breast and ovarian cancer. I want to help make a difference so that people are informed, empowered, know their bodies and take care of themselves.

Author

Desiree


  • Teri

    Hi Renee,
    My name is Teri. I was diagnosed 1 year ago this week with Breast Cancer, in my right breast. I had a mastectomy Dec. 10, 2012 .Last week I had a full hysterectomy and when I recover from that, I am scheduled to have the same surgery as you. meaning, removal of my left breast and tummy tuck. I have been very uneasy about the procedure of the tummy tuck, and reconstruct with my own tissue. Not sure why, I keep second guessing my decision of the reconstruct, and just doing the mastectomy.
    I am sorry you are having so much pain. What have your doctors told you as far as recovery? I have wanted to talk to someone about the procedure to see what I might be up for.
    Any insight would be awesome.

  • Sandra Ferguson

    I was diagnosied first in 2000. I had a lumpectomy followed by radiation. The surgery went well and so did the radiation process. After learning that I would be alright I finally calmed down and let myself breathe. I armed myself with information from, doctors, nurses, researchers, genetic counselors, online info, and programs. I had articles written about me and my breast cancer three times. I participated in studies, and programs. I even started helping woman who were newly diagnosised on the "SHARE" hotline. I was a breast cancer survivor and I was proud of it. I completed my mammogram first every six months then yearly. Every year I received a clean mammogram I was elated. But then March 28, 2014 as I sat in the waiting area my heart began to pound so loud I thought for sure everyone in the waiting area could hear it. The mammo. tech. wanted me to take additonal pics. That's when it all started again. After a much needed cry I dusted myself off and began to go through all test needed to have
    a mastectomy of my right breat that had developed into a new cancer in the same breast. This time I had to put all of my past information to good use. I drew on my past strength, as well as my positive attitude that has brought me this far in life. The mastectomy was 5/22/2014. I feel great. The surgery went well and I'm doing good. All praises due to GOD. I am now a 2-time survivor. I think I can get used to that. I like the way 2-time suvivor sounds. To all the women reading my message know that you will get through this. This too shall past and you will be stronger afterwards. Remember you are a survivor who will be alright. Arm yourself with informatiom and think positive always. Never forget GOD'S got you covered.

  • Renee

    Your story was very helpful, I was diagnosed as BRCA positive in September of 2012 in my left breast and I was in total shock because I had just turn 40. I went through all the proper testing to make sure that their was no cancer anywhere else. So I decided to have a bilateral mastectomy and tummy tuck for reconstruction of my breast, the results were great but its been over a month ago since I had surgery and I feel like an insomniac. I haven't had a good nights sleep since before I had my surgery and I'm very exhausted. I can't lay on my stomach and when I lay on my back the tension in my stomach is overwhelming,and if I lay on either side to long my hips and thighs hurt any suggestions on how to get some sleep I'm totally wiped out.

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