We implore women and the men who love them to read this article: it might save your life or the life of someone you love.
Ovarian Cancer Symptoms
For many years, ovarian cancer has been known as “the silent killer.” Experts now believe that there are some identifiable symptoms. Ruth Davis, our beloved Mother, had several of these symptoms. Because this disease is so difficult to diagnose her symptoms were misperceived and misinterpreted despite the best efforts of the medical staff. In spite of her own discomfort and frustration while undergoing countless diagnostic procedures, Mom remained courageous, gracious and upbeat. Her quips earned her the family title of "the lay-down comedian". Once she was given the diagnosis of ovarian cancer, she asked that we do everything possible to spread awareness in the hope that others might be spared what she experienced.
Mom was nearly 98 when ovarian cancer was diagnosed. It may seem strange to be making a fuss over the passing of a woman who had been blessed to live such a long and full life, but if you had known her, you would understand the fuss. She was vital, kind, wise and her connecton to countless individuals around the globe enriched their lives. Before September, she was an otherwise amazingly healthy, vibrant woman in love with life, and happily on the road to becoming a centenarian. She even traveled across country on her own to greet her great-great-granddaughter last spring. In addition, she wrote many articles for this publication. Our goal in telling her story is to raise awareness, to reduce unnecessary diagnostic and surgical procedures, and hopefully to save lives.
More than 21,000 women in the United States are diagnosed with ovarian cancer each year, and approximately 15,000 women die annually from the disease. Unfortunately, most cases are diagnosed in their later stages when the prognosis is poor. However, if diagnosed and treated early, when the cancer is confined to the ovary, the five-year survival rate is over 90 percent! The problem is that the disease presents in so many different ways, it is nearly impossible to pin down and currently no reliable screening approach exists.
According to http://www.ovariancancer.org/about-ovarian-cancer/statistics/ the mortality rates for ovarian cancer have not improved in forty years since the “War on Cancer” was declared. Other cancers have shown a marked reduction in mortality, due to early detection tests and improved treatments. Unfortunately, this is not the case with ovarian cancer, and it remains the deadliest of all gynecologic cancers. Some gains in extending the lives of patients have been made.
Before telling Mom’s story, here are some important points to note:
- Digestive difficulties, ESPECIALLY when accompanied by unexplained abdominal bloat that lasts longer than 2 weeks, is reason for a doctor's visit.
- In fact, the bloating, burping, difficulty eating and diminishing energy Mom was experiencing were easily interpreted as gastric, and are also CLASSIC symptoms of ovarian cancer. Among the suspected conditions were GERD; her long-standing (never very symptomatic) hiatal hernia; an esophageal stricture or gall badder problems. Focusing on gastrointestinal causes can lead to a delay in diagnosis or failure to diagnose, and certain death.
- For some, though this was not the case with Mom, unexplained hip and back pain as well as many other vague symptoms can be an indication of ovarian cancer. A woman we knew was told her hip pain was “all in her head” until ovarian cancer was discovered – by then it was stage 4. After three years of treatment, this proved fatal for her.
- With no effective screening tools at this time, personal awareness and being informed is exceedingly important.
A Google search for “Ovarian Cancer” will reveal a wealth of pertinent information (see resources at the end of this article). When searching the web for help with digestive problelms, we found no mention of this possible connection. If you are not aware of the connection between what appears to be a digestive disorder and what might be ovarian cancer, the risk of diagnostic delay increases.
Sharon L. Rocklin, a close family friend and an Ovarian Cancer survivor says, quite poignantly, “Ovarian Cancer is not a “silent killer.” It whispers, it shouts, it asks for attention. Women are dying because no one is really listening. It can be treated - but only if it is found early.”
And this is the operative term: FOUND EARLY. As indicated above, finding it early is profoundly challenging – primarily because its' symptoms suggest so many other diseases. Research continues in an effort to develop a reliable screening approach. A pre-screening form can be found at: http://ovariancancer.com/app/index.php?pid=27
Sharon was lucky. In her case, the cancer’s discovery was a fortunate fluke. At 28, having just delivered a baby, she was experiencing strange symptoms that brought doctors to the correct part of her anatomy. Thankfully, she has lived to tell the tale, a survivor of nearly 50 years!
No female of any age is immune to this disease ( including women who have had hysterectomies): it has been found in girls as young as eight years old. But it is important to know that, according to the Mayo Clinic Site: The risk of ovarian cancer increases as you age and most often develops after menopause.
“Remember - that the energy you use in bemoaning a situation, you can use to such wonderful advantage in solving it.” Our mother, Ruth, wrote these words when she was around 30 in a letter to a sister-in-law going off to college. It is one among many nuggets of wisdom by which she lived her life. With that in mind, please read the following cautionary tale and take it to heart. If even one woman can be spared the unnecessary trauma Mom endured, if even one life might be saved as a result of her death, there is little doubt that she herself would be the first to say that what she experienced was all worth it in the end!
Ruth’s Story – A Cautionary Tale
This is an abbreviated account of the last few months of our mother’s life.
Beginning in early September, Mom returned from an outing with friends complaining that dinner hadn't agreed with her. Her belly was noteably distended and she was belching frequently. It was easy to chalk it up to simple indigestion. We became concerned when her symptoms didn't seem to let up and scheduled an appointment with her primary physician. He took a full range of tests: blood, urine, EKG, etc. and unable to determine any cause, prescribed a PPI (proton pump or acid inhibitor).
When Mom's symptoms persisted in spite of the medication and when she began to have increasing difficulty taking in nourishment and, of course, was losing weight, she was referred to a GI (gastroenterology) specialist. On the night before her scheduled appointment she was taken to the ER and ultimately admitted. An additional symptom appeared: after ingesting tiny bits of food, she would often wretch up phlegm. She was examined, tested, questioned, hydrated, and ultimately released without a clear explanation for her continuing symptoms.
About two and a half weeks later, she was back in the ER, and was readmitted. During the following two and a half weeks she experienced more trips through the hospital corridors for more and more tests and procedures. Among them were:
A barium swallow and more X-rays, to provide a way of tracking the function of her esophagus. This only revealed the noteably slow descent of her intake, and the size of her hiatal hernia while providing no information to explain the continuing symptoms;
An endoscopy (a tiny camera lowered into the stomach) was performed in hopes of discovering a stricture or some other problem that might explain her difficulty eating;
A feeding tube was installed that would presumably allow Mom to take in nutrients, bypassing the perceived blockage that she felt rested in her midchest area. Ultimately this was in vain, as her body rejected that, as well.
The aspiration of belly fluid (an Ultra-sound-guided withdrawal of fluid through a syringe) was performed and the fluid was tested for infection.
A PICC line (Peripherally Inserted Central Catheter) was installed for the delivery of TPN (Total Parenteral Nutrition), in a final attempt to compensate for her diminished intake by sending nutrients directly into her blood stream;
A CT scan was done of the abdominal region;
A Pelvic Exam was performed by a gynecological oncologist.
She continued to withstand it all with humor and grace.
It was after the CT scan that the notion of a malignancy was first mentioned. The doctor reported, a mass in the area of the large intestine, something irregular in the pancreas and some fluid in the lungs. The next evening when a gynecological oncologist showed up in Mom's room, it was like being hit with a ton of bricks. He explained that the suspicion was that Mom had cancer that had started in her ovaries. The results that no one had been looking for were revealed. By then even simple hydration had to be discontinued. Her body was unable to appropriately use fluids causing swelling in her limbs and fluid in her lungs. Had she been younger and less frail, perhaps a course of treatment that included surgery and chemo might have helped, but this was not an option for her. In retrospect we would wish that the diagnosis had come earlier allowing her to be at home for her final weeks and spared the many tests and procedures.
Thirty-six hours after her diagnosis we brought Mom home with hospice support. Her deterioration over the next 8 days was stunningly rapid, particularly during the second half of the week. By one week after her return home, she was unable to talk. Less than 48 hours after that, in the early morning hours of November 21, 2011, she breathed her last peaceful breaths, surrounded by her adoring and beloved children, one son-in-law, and a great-granddaughter.
Break the Silence!
The term “the silent killer,” has been given to ovarian cancer. We certainly had never heard about it.
Dr. Mehmet Oz "Dr. Oz" has made valiant efforts both on his TV show and on the web to spread awareness and advocacy about ovarian cancer. Numerous other organizations with the same goal exist, and their websites are filled with important information (see below). Pink, the color symbol of breast cancer has become a well-known icon. We hope to see more and more teal, the color symbol for ovarian cancer.
It is our heartfelt desire to spare others the shock, confusion and grief we experienced in our Mother’s situation. Please, won’t you help us break the silence?
Here are resources and information we hope you will find helpful:
Survivors Teaching Students®, a program of the Ovarian Cancer National Alliance. STS brings ovarian cancer survivors into health professionals’ classrooms to share their stories and key information about the disease. The program has grown to include 98 medical schools around the country, as well as 40 nurse practitioner, nursing, and physician assistant training programs. (To learn more about bringing the Survivors Teaching Students® program to your local health professional school, please contact the Ovarian Cancer National Alliance at: (202) 331-1332 or email Linda John at [email protected].)
Ovarian Cancer National Alliance also offers this free App, a tool to help women track the symptoms of ovarian cancer. It is their hope that this app will help women be diagnosed as early as possible, potentially saving their lives. Your help is needed to spread the word. The App asks a woman a few questions about her risk factors. She can then log in and record symptoms that research has shown are common for this disease:
- pelvic or abdominal pain
- difficulty eating or feeling full quickly
- urinary symptoms (urgency or frequency)
A woman using the Ovarian Cancer Symptom Diary App can email herself a report summarizing her risk profile and recorded symptoms--a useful tool when visiting her doctor to discuss ovarian cancer.
National Ovarian Cancer Coalition - http://www.ovarian.org. Download the very valuable worksheet by Dr. Oz - Break the Silence on Ovarian Cancer; Learn how Ovarian Cancer is Diagnosed? http://www.ovarian.org/detection.php ; Read about NOCC’s Mission Statement- http://www.ovarian.org/about_us.php
September is National Ovarian Cancer Awareness Month. Join the walks and other activities held around the country.
Ovations for the Cure of Ovarian Cancer http://www.ovationsforthecure.org/indexAwareness.php – a very compelling site -“supporting research, awareness & patient outreach programs”
The Ovarian Cancer Program at Mayo Clinic - http://www.mayoclinic.com/health/ovarian-cancer/DS00293
National Cancer Institute - http://www.cancer.gov/cancertopics/types/ovarian See the online booklet What You Need To Know About™ Ovarian Cancer to learn about ovarian cancer symptoms, diagnosis, treatment, and questions to ask the doctor.
Ovarian Cancer National Alliance - http://www.ovariancancer.org/ "Advancing the Interests of Women with Ovarian Cancer"
Take a quiz to see what you know about Ovarian Cancer at:http://www.ovariancancer.org/quiz/
Johns Hopkins Pathology - http://ovariancancer.jhmi.edu/menu_understanding.cfm Ovarian Cancer- Information, Inspiration & Community: Ovarian cancer is a serious and under-recognized threat to women's health
Gilda's Club - http://www.gildasclub.org/res_ovarian.asp Publisher of Conversations! The International Newsletter for Those Fighting Ovarian Cancer, a free monthly newsletter providing hope, humor, support and information about treatment options and coping tips. Survivor-to-fighter matching service available. (806) 355-2565
Looking to early detection and cure: http://www.marsharivkin.org/
There is a shortage of medication to treat Ovarian Cancer. Please help by signing this petition http://www.ipetitions.com/petition/ovariandrugshortage/
Photos: Family collection