Phyllis Lang

May 2014

I am 62 years old and married with two daughters (one who is 39 and one 20) and four grandchildren. Because of my family history I have always been very “body conscious” and kept up with my Pap smears and mammograms every year, without fail.

Funny I chose October for my yearly mammograms before October became known as “the pink month.” You see, my mother had breast cancer, twice in her early 30’s, and was a 44-year survivor. She had a great surgeon who insisted that she have an oophorectomy, too. My mother’s mom, however, was not as fortunate. She too had breast cancer at 30 but also had ovarian cancer, and passed away when my mom was only 12.

In 1996, my youngest daughter was 3. I was 45 and was a stay-at-home mom for the first time in my life. I was also in the best shape of my life, spending three to four days a week at the gym, biking, walking and generally trying to keep up with my little person. In September (only 4 months after my last Pap and GYN exam) I felt a lump in my lower abdomen. The lump was accompanied by bloating and gas that just didn’t go away no matter what I did. I called my gynecologist to schedule an appointment. After doing a physical exam he had the nurse do a trans-vaginal ultra sound. There they saw a growth on one of my ovaries. The doctor (he happened to be a fairly new one for me as we had just moved a year prior) said he thought it was probably just a cyst, “Let’s wait,” he said. I looked at him and said, “Have you read my file, do you see my history?” He still thought I should wait.

At this point my older daughter called her doctor on my behalf. This doctor saw me the next day and had me scheduled with a gynecologic surgeon two days later. While I was in surgery they came out and told my husband what they had found — Stage III Ovarian Cancer. I had a full hysterectomy and oophorectomy.

Since we had just bought a small business and were in the process of moving to Oregon, I went through the first Taxol and Carboplatin treatments in Florida and then had the next four treatments in Oregon.

Immediately after I was diagnosed, my mother went in for genetic testing. She was BRCA1 positive. She convinced me to do the testing (which I did in Florida just before we moved). When I called for the results, I was told they were not in the system; when they found them, the results were negative. The decision to do a prophylactic mastectomy was put on the back burner. My mom never believed the results.

In March 2004 (7 years later!), I went to my primary care physician for a urinary tract infection. After the course of antibiotics, the infection was gone but the pain remained. This nagging pain, bloating and burning went on so I was referred to an urologist who put me on anti-depressants. After a month of this, the urologist wanted me to have a colonoscopy. At that point I got my brains back and said no I think we need to a CT scan. A scan was done the next day which showed a tumor on the bowel as well as many tumors in the abdominal cavity. Additionally, My CA125 had risen to 201. I had surgery by a gynecologic oncologist, including bowel reconstruction. This was followed by another six courses of Carboplatin and Taxol.

In October of 2005 (18 months later), my CA125 rose to 20 when it had been under 10. When I went for my yearly mammogram they found evidence of an abnormality in the left axilla, or armpit. After more tests and a rise to 54 of my CA125 by November, I went in for surgery to remove the lump and 15 lymph nodes. Seven of the 15 nodes were positive with ovarian cancer.

I had a choice at this point — wait and see or do a prophylactic course of Carboplatin and Taxol. I choose the treatments as I am not a sit-around-and-wait kind of person. I finished my four treatments in March of 2006.

From the very beginning of my cancer journey, I have worked full-time with my husband in our family business. Keeping my mind and body active was important. But, I felt it was time to start working on my “to-do-now” list. One of the things on top of that list was going back to my love of children’s theater. I have been fortunate enough to be cast in six shows (all fun character roles) and have, over the past two years, gotten involved in the production end of the shows doing props.

In October of 2011, I went in for my annual mammogram and was told that they found a lump in the left breast. A needle biopsy revealed that it was positive for breast cancer, not ovarian cancer. I was in the midst of a show so I underwent six rounds of chemotherapy starting in January 2012.

In February 2012 I went in and had the genetic testing done again. This time the results came back positive for BRCA 1. I had a double mastectomy with the start of reconstruction in April 2012 and my final surgery in October 2012.

Right now, I continue to have good CA125 numbers and am active in theater both working and volunteering. I am also involved in the Survivors Teaching Students® program with the Ovarian Cancer Alliance of Oregon and SW Washington, and volunteer with the Sherrie Hildreth Ovarian Cancer (SHOC) Foundation. On top of that, I am still working and have added belly dancing lessons to my “to-do-now” list.

I guess a moving target is harder to bring down!