Wednesday, August 28, 2013


Thirty-three years ago, I walked into my surgeon’s office and said, “WOW, I actually made it 5 years”.  I was referring to my breast cancer surgery which he had performed, very successfully I might add!  He was an excellent surgeon and a truly nice person.  He didn’t look very happy about my pronouncement!  He told me that new statistics now showed that the true marker of success was currently considered 10 years.  Talk about deflating your bubble!  Well, I made it to 10 and ultimately to 38 years – so I guess he did his job well – and I guess I beat the odds:) 

Last week I walked into another surgeon’s office – my current Guardian Angel – and said the same words.  Knowing that Ovarian Cancer is not famous for its long-term survival rate, I was just thrilled to be standing there.  After some discussion, I learned that it’s not always considered the automatic death sentence I had considered it.  In some situations and medical practices, it’s actually being treated as a chronic disease.  WOW, that was a shock – a very pleasant one for a change.  I decided to do some research and came up with some interesting facts I would like to share.  Bob Dylan said it first: “The times, they are a’changin” 

Before I run the risk of getting too serious, I must tell you that this 5-year milestone had another effect on me.  I once again began to look over my shoulder at the calendar pages flying by.  Good Lord, I’d made it 5 years – that big chariot has to be coming soon to pick me up.  I began to think of all the things I should be doing, but all I really wanted to do was stay in my ever-shrinking comfort zone.  Tim McGraw’s hit song “Live Like You Were Dying” asks what you would do if you thought this might really be the end.  His answer is “I went sky diving, I went Rocky Mountain climbing...”  I’m terrified of heights, so those were out.  But I thought that living a quiet, normal(?) life was somehow giving up and giving in to the cancer.  Fortunately for me, I have extremely supportive and very smart people around me.  My daughter is a psychologist who
always manages to think outside the box, my son constantly amazes me with his insight and thoughtful questions, my doctor and nurses deal with people like me every day and are more than willing to jump in and help – which they did, and my husband is a saint with 40 years of living with my ups and downs.  They have, once again, grounded me and made me realize that what I am doing is what’s best for me right now.  So I’m back to celebrating the 5 year anniversary and ignoring the calendar pages – I watch the waves roll in and I thank God for all the amazing and wonderful gifts in my life!

Speaking of gifts – let’s get back to this new (at least to me) chronic disease classification.  Often called the "disease that whispers" Ovarian cancer causes more deaths among women than any other type of reproductive cancer.  The symptoms are often vague and women and their doctors often blame them on more common conditions.  By the time the cancer is diagnosed, the tumor has often spread beyond the ovaries often leading to death.  By then, the disease is most likely in the later stages and the majority of women survive but a year or so.  But, as I’ve recently learned, many Oncologists are now treating Ovarian cancer as a chronic disease and, as a result, are extending the lives of many women fighting this cruel monster. 

Dr.  Method and Dr. Rodriguez, two Gynecologic Oncologists in Northern Indiana, explain that by treating the cancer as chronic rather than acute, they are extending the lives of their patients. They claim to have 50 percent of their patients surviving 5 years or longer and they believe it's because of appropriate surgery and aggressive chemotherapy. They treat their patients as if this disease is something they can live with, and live successfully with, for many years. 

The following is from an Abstract by the Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia: 

Ovarian cancer is the deadliest gynecologic malignancy in the United States. Evidence-based interventions for the prevention and early detection of ovarian cancer do not currently exist. However, several treatment guidelines, including the receipt of treatment from a gynecologic oncologist, have been shown to result in improved survival from ovarian cancer. 

Wow! “...the receipt of treatment from a gynecologic oncologist...”  I’ve always known I was blessed by finding my special Guardian Angel, Dr. M – I just never knew how very blessed.  My gynecologist of 20 years immediately sent me to him when my trans-vaginal ultrasound showed increasing fluid and my CA-125 was 475 – up from 2.1 the previous year!  

Turning ovarian cancer from a disease that whispers into one doctors can diagnose and treat before it's too late seems to be looming on the horizon.  Ironically, the “magic new screening test for ovarian cancer” seems to be the same CA-125 that I have been getting annually for many, many years.  Whenever we moved and I was forced to change doctors, I always had to fight for the annual blood test.  I was told it lacked sensitivity and specificity, it caused too many false positives, it was too expensive and too inconclusive.  I always fought and fortunately I always won.  Ironically, that test is now the “new test to screen for ovarian cancer” which appears to detect the disease in early stages, and if confirmed in clinical trials, the test could become a routine screening for women.

In the study, researchers tested the strategy on more than 4,000 women over an 11-year period. The women underwent yearly blood tests, and the researchers recorded the levels of a protein called CA-125, which is produced by the majority of ovarian tumors. Women who had sudden increases in CA-125 levels were referred to a gynecologist and were given an ultrasound. The new strategy is different because it tracks changes in each woman's levels of CA-125, instead of only looking for a CA-125 level that might be considered high based on the average of the entire population. It's more personalized, and it also incorporates age. 

Thank God they have found a new way to utilize this test.  It has always been an accurate and responsive marker for my cancer.  When it climbs consistently, the cancer is active again – when it drops steadily, the cancer is regressing.  
In order for this method to become a screening test, it has to pass the gold standard.  It has to show that in a large group of women who did the screening, there were fewer deaths from ovarian cancer compared to another group who didn't get screened.  The researchers are waiting for the results of a larger, randomized study currently being conducted in the United Kingdom that uses the same screening strategy. The results are scheduled to be released by 2015. 

Over 14,000 women die of Ovarian Cancer every year.  September is National Ovarian Cancer Awareness Month.  TEAL is the color – wear it proudly!  There are many organizations who work tirelessly to ensure that necessary treatments are covered by Medicare, that drugs and tests on the market are safe and effective, and that federal policy makers are aware of the importance of the ovarian cancer community.  Please do what you can to fight for women with ovarian cancer, and policies that help support them and their families.  May God bless you with good health!