Nancy Romer

In 2001 I was diagnosed with stage IIIC ovarian cancer at the age of 32. My mom, the late Judge Judy West, died of breast cancer in 1991, at the age of 49. My maternal aunt also died of breast cancer early in life. If someone would have told me prior to 2001 that breast and ovarian cancer were genetically linked, it could have made a difference in my life today.

My diagnosis was a surprise. I was a wife, working mother of two (my second child was only seven months old), athletic and otherwise very healthy. After months of complaining that something was not feeling right. I found out that I had two very large bi-lateral cysts on my ovaries. My Ob/GYN eventually decided that I needed to have an outpatient laparoscopic procedure. This is when my life changed.

On October 1st, 2001, I woke up from what should have been a routine surgery to learn I had ovarian cancer. I had undergone a complete emergency hysterectomy and de-bulking surgery on my colon, bladder and diaphragm. In addition to this news, I was faced with a new doctor that was not my OB/GYN but a gynecologist oncologist.

As you can imagine, this was a complete shock to me and my family – my husband, my children (now ages 12 and 7) and my two older brothers. Before deciding on a treatment plan, my family and I sought and received second and third opinions. The time-line and geographic location of my treatment is as follows:

10/01 – started 6 cycles of standard chemotherapy-locally
11/29/01 – met with a Genetic Counselor at the Hereditary Cancer Program at Children’s Hospital in Cincinnati, OH. I was diagnosed with the BRCA 1 gene.
12/01 - both my brothers were tested and luckily they do not have the BRCA 1 gene.
2/02 - second-look surgery at MD Anderson Cancer Center-Houston, TX
3/02 - started high-dose chemotherapy stem-cell transplant using my own stem cells (3 months in Texas)
7/02 - back to TX for Radiation to my abdomen
8/03 - 6 to 8 months of chemotherapy – locally
8/04 - High Dose chemotherapy Bone-marrow transplant using a perfect match donor (4 to 4 ½ months in Texas)
10/05 to 2/06 – More chemotherapy at UK Medical Center in Lexington, KY every two weeks
8/06 – Radio-frequency Ablation to area near liver-outpatient procedure at UK Medical Center in Lexington, KY
10/06 – Found fracture in left hip-avascular necrosis routine scan with my Transplant Doctor that transferred to Hackensack Medical Center in New Jersey from M.D. Anderson.
10/06 - 3/07 – Started more chemotherapy; 5 to 6 months every 2 wks, locally at St. Elizabeth Cancer Center in Edgewood, Ky.
4/07 – complete hip replacement with local Orthopedic Oncologist in Ohio, to make sure the fracture was not caused by a metastasis to the bone
5/07 to 11/07 – weekly chemotherapy (Abraxane and Avastin) with one week off a month locally at St. Elizabeth Medical Center 
11/13/07 and 1/98 – Donor Leukocyte Infusions (infusion of white blood cells obtained from blood from original donor with transplant Doctor at Hackensack Medical Center
05/08  to present - cancer became active and started weekly chemotherapy at St. Elizabeth Medical Center (Abraxane and Avastin)               

In summary, I have had an unbelievable amount of chemotherapy and related medical treatment. The cost of these procedures is quickly approaching a million dollars. I am blessed to have quality health insurance; however, I believe the majority of these expenses would not have been incurred had I known my genetic predisposition.

Before I was diagnosed, I knew I had a strong family history of breast cancer but had no clue that ovarian cancer was linked. Unfortunately, no doctor or medical professional told me that a simple blood test could determine if I carried the genetic marker that significantly increases the risk of breast and ovarian cancer. If I had that information, I could have pursued effective medical options to prevent and/or reduce the risk of developing these deadly cancers. I at least may have caught this “silent killer” earlier.

Now, with this knowledge, I can teach my children about the importance of genetic testing, preventative measures and early detection. Now it is time to inform the public as well.

Sincerely,

Nancy Romer