This is a momentous day for me and for anyone who has suffered from cancer. Today marks the fifth anniversary since I finished treatment for advanced ovarian cancer – epithelial, stage IIIC. I was diagnosed in March of 2008 and received eight months of treatment involving two major laparotomies and nine cycles of both intravenous and intraperitoneal chemotherapy. I have been followed every six months since finishing treatment. For three years, this meant a CT scan, plus a CA 125 blood test, an internal exam and careful questioning about symptoms. At my three year anniversary, without signs of a recurrence of my cancer, I elected not to receive any more CT scans. From the time of diagnosis through my three year follow-up I had received a total of ten and had growing anxiety about hurting my apparent, and hard-won, good health by subjecting my body to pretty high doses of radiation with each CT scan. I discussed this with my oncologist who acquiesced to my decision as long as I watched and reported any symptoms and continued to be followed with blood tests. If symptoms occurred, or the CA 125 began to steadily rise, we would then do a CT scan to provide additional information.
I had my intravenous port taken out just last May, four and a half years after finishing treatment. Given my diagnosis, the chances of a recurrence were over 75 percent, I was urged to keep the port as an “insurance policy.” So, I did, faithfully getting it flushed every 1-2 months all those years. I paid out-of-pocket for these flushes as well as the CT scans since I had an individual insurance policy with a high deductible. My total out-of-pocket costs in a year amounted to $20,000 before finally getting on Medicare last December. What a relief!
I will travel to Johns Hopkins Hospital in Baltimore today to see the third gynecologic oncologist I have had since I began treatment, the other two have since left Hopkins for other venues. This doctor was part of the team that treated me in 2008, so he saw me in clinic at least once and dealt with an infection in my abdominal medi-port site. I don’t know if he will consider me “cancer free” at this five year mark without a CT scan, but I fervently hope so. I am hoping he will say I am discharged from the Kelly Gynecologic Oncology Service to the annual care of a local gynecologist. We will see.
This is a day for reflection. The first thoughts and feelings I have are extreme gratitude for my apparent good health. I have been able to truly push the anxieties of having had cancer into the deeper recesses of my psyche where it has only surfaced around my six month follow-up visits. Much more difficult has been dealing with the profound feelings of loss after my husband’s death from pancreatic cancer just six months after finishing my own treatment. He became ill the week before my last chemotherapy and had emergency surgery for a completely blocked gastrointestinal system the night before that last treatment. It took three weeks to get a definitive diagnosis, and the completely devastating news that he had advanced pancreatic cancer. That news was delivered to us in a room on the same floor, just steps down the hallway from where I saw my GYN- oncologist – my destination today. So my hope and feelings of gratitude are tinged with sadness for my husband who died in otherwise excellent health at age 59. Life, for sure, isn’t fair!
My gratitude goes first to the doctors and nurses and other members of my care team at Johns Hopkins who gave me top notch expert care. This article published in the New York Times last March explains why that expertise is so critical to a good outcome. The study featured in the piece involved more than 13,000 ovarian patients and found that two-thirds did not receive standard care recommended by the National Comprehensive Cancer Network. Dr. Bristow, the lead author on the study, used to head the Kelly Gynecologic Oncology Center at Johns Hopkins, and he was my gynecologic oncologist all during the active treatment phase of my care. I not only had excellent, expert “search and destroy” surgery, I also had aggressive chemotherapy involving both intravenous and intraperitoneal delivery of chemotherapy drugs which research has definitively shown significantly improves survival.
Two paragraphs from the article offer, I think, surprising and strong reasons for ovarian cancer sufferers to feel hopeful:
“Ovarian cancer has unusual traits that make it more treatable than some other cancers. It is less likely to spread through the bloodstream and lymph system to distant organs like the lungs and brain. The tumors do spread, but usually within the abdomen and pelvis, where they tend to coat other organs but not eat into them and destroy them, said Dr. Matthew A. Powell, a gynecologic oncologist and associate professor at Washington University School of Medicine in St. Louis.
And most ovarian cancers are extremely sensitive to chemotherapy, experts said.”
My gratitude goes secondly to my family and friends without whose steadfast support I could not have sustained the difficult journey of being diagnosed with a late-stage cancer, undergoing debilitating surgeries and chemotherapy, followed quickly and unbelievably by the illness and death of my closest best supporter, my husband. Without these people in my life, I believe my medical team would not have been able to succeed as well as it seems they have.
Today we will see if I am done with this nightmare and can finally truly and completely move on.