Rosalind’s Story (Stage 4 Breast Cancer)

My Cancer Journey

I found a lump as I was giving myself a breast examination before my shower in September of 2008, while I was seeking medical attention for my knees. At the time, I did not have health insurance. At the medical facility, there was a sign for free mammograms at Sibley Hospital in Washington, DC. I hadn’t had a mammogram in 8 years.

I was grateful for the opportunity for a free mammogram because I could not afford health insurance at my job. I did not make enough to afford it. I did have some financial assistance from JSSA and a few other organizations back then. It was still not enough. My spouse at the time worked 60 to 70 hours a week to keep a roof over our heads. I had built up vacation and sick time and I used my short-term disability.

I made an appointment in October of 2008. The radiologist was not comfortable with what they were seeing. Next, they wanted to do needle biopsy. In December of 2008, they performed a surgical biopsy and many other tests. I was diagnosed with ductal carcinoma in situ (DCIS) Stage 1, 2a. Then, I had 2 lumpectomies weeks apart from one another in January of 2009. My breast surgeon at the time told me that the margins were unclear, and that I needed a mastectomy or to go through chemo and radiation. So, we scheduled my mastectomy for the end of February 2009 with reconstruction.

Throughout the summer, they filled the expander with saline. And when it was filled to the limit, the reconstruction was finally finished in August 2009. They put me on Tamoxifen and I was on it for 1.5 years. I could not handle the side effects from it. Then, I was on Fareston for 2 months, and the side effects were even worse. I went off of the medication and my cancer was in remission. At least for 8 years.

My cancer came back in September of 2016. I was devastated because my breast surgeon told me that my cancer would not come back. I took it very hard. I am so grateful that my spouse, Sarah, was there for me along with some friends and extended family. Most of my blood family and my in-laws were not there at all for me.

Throughout the years, I could not afford the mammograms. I worked in retail and it did not pay very well. I was always tired. Even with my health insurance, my medical bills were getting out of hand and are still out of hand. I tried to avoid going to doctors for small things. In June of 2015, my legs were both swollen and I had no idea what was wrong. Even my primary care doctor did not recognize that I had cellulitis in my left leg and lymphedema in both legs. None of the other doctors that I saw in the emergency rooms at different hospitals, including orthopedic doctors, could correctly diagnose me.

I found another primary care doctor in September 2016 and during a routine physical, she found a lump on my right breast. I could not believe it, because my breast surgeon told me the cancer would not come back. It was a shocker to say the least.

I did a mammogram, then a sonogram of the right breast, and then a needle biopsy. My primary care doctor referred me to an oncologist, and they put me on an oral chemotherapy medication. They did not want to do the surgery right away and just wanted to try the oral chemo first. It was just as harsh as the chemo infusion.

In December 2016, the main tumor (which I named Congress) was attached to my implant and spread to my lungs (which I named Democrats, Republicans, and Independents). The oral chemo did work and shrunk the main tumor by 50% and then it was evicted in August 2017. The other tumors were evicted in 2018/2019. I just recently found out that my breast cancer is back in remission. I am still on the oral chemo until it stops working. I am also taking hormone blockers. Now I have chemo brain, and I have trouble remembering things. Also, it is sometimes hard to get my thoughts together.

I am now on full disability. I miss doing the things I used to do. It is not easy getting the help you need. It is not easy living in poverty. We are scraping by and its tough being on a very tight budget. I am very grateful for all of the help that we have gotten over the years. It has been rough, but I keep on discussing breast cancer in men and women. It does not care who you are, what race you are, what color you are, and it does not have to run in your family.

That’s my story!

Rosalind (Roz)

Surgeries I have had:

2002 Fibroids
2008 October – Needle & December – Surgical Biopsies
2009 2 lumpectomies – January, mastectomy & reconstruction –
February, Final implant surgery – August
2016 October – Needle Biopsy
2017 August – tumor removed and implant replaced
2018 Capsulectomy
2019 Explant, implant removal

MD
Submitted 05/15/2023

This story is intended to convey a personal experience and should not be relied upon as a substitute for professional medical advice.