A conversation you never want to have with your doctor is just the one Julie Schaffner had to endure.
Editor’s note: The staff at Make It Better was saddened by the news of Julie Schaffner’s passing on Dec. 31, 2010. Her interview here is an ongoing testament to her dedication to family, work and the fight to find a cure for ovarian cancer.
Schaffner, the COO and CNE at Lutheran General Hospital understands what it means to be at the top of her game. Yet even with both a nursing background and the best medical resources at her fingertips, her ovarian cancer went undetected. This North Shore mom shares her story with us in the hope other women will get diagnosed early.
An estimated 21,550 new cases of ovarian cancer are expected in the US in 2009 with about 1,000 in Illinois. Women diagnosed in the earliest stages have a five-year survival rate of nearly 93 percent according to the American Cancer Society (ACS).
Prior to her diagnosis, Julie Schaffner frequently experienced irritable bowel syndrome (IBS) and vague gastrointestinal (GI) symptoms. When she visited her doctor in January, she was told that IBS and GI are aggravated with stress. In February, she visited her gynecologist and her annual pap and pelvic exams were normal.
In April, she noticed persistent fatigue and bloating. Her clothes weren’t fitting and she talked with her doctors about pain and discomfort. Doctors prescribed medicine for IBS and GI symptoms and that helped. The pain, however, did not go away.
Finally, in May two weeks before her son’s New Trier high school graduation, a cat scan was ordered. The morning after her son’s graduation, she was called to the doctor’s office for the diagnosis – “adeno carcinoma cancer cells in great numbers” in her lymph nodes and a need for further tests to identify the source.
Maryann Rasmussen: How did you feel when you heard the news?
Julie Schaffner: Like a Mack Truck hit me, especially when they did not know what kind of cancer.
The diagnosis was ovarian cancer stage 3-C. She had surgery, began aggressive chemotherapy and entered a clinical trial for the drug Avastin. Avastin is the first drug in its class to stop tumor growth but it’s not yet approved for ovarian cancer.
MR: What do you think of clinical trials?
JS: I recommend them. All across the country, five thousand women with aggressive ovarian cancer are enrolled in Avastin clinical trials. It’s a blind trial-either you get the placebo or the drug. Neither the patient nor the doctor knows which one you have received.
MR: What do you think you are receiving?
JS: I don’t know, but since I don’t have side affects, I think I am getting a placebo.
According to the American Cancer Society, early stages of Ovarian Cancer tend to cause somewhat vague symptoms. These symptoms might include:
- Swelling of stomach (abdomen) or bloating caused by build-up of fluid or a tumor
- Increase of abdominal girth
- Pelvic pressure or stomach pain and or pain during intercourse
- Trouble eating or feeling full quickly
- Having to urinate often or feeling like you have to go right away
- A persistent lack of energy
- Low back pain
- Unexplained changes in bowel habits, such as constipation
- Changes in menstruation
MR: How did ovarian cancer affect your career as a top executive of a hospital?
JS: Lying in a hospital bed as a patient and feeling helpless offered me a different perspective. In a way it was a blessing in disguise because of my personal experience, I understand both the medical and the emotional perspective of cancer.
MR: How did ovarian cancer change your life?
JS: It is amazing how you cope. It is important to have a strong support network. I have my family, friends and hospital directors and they are all wonderful.
MR: And if you don’t have a strong support network?
JS: There are so many wonderful organizations for support, the American Cancer Society’s Patient Navigation Services, Ovations, the Cancer Treatment Center , and the Care Pages website. I started a blog on the Care Pages website. Now over 800 visitors from all over the US come together by word of mouth. It gives me great joy and many “cyber hugs”.
MR: What was the hardest part of your treatment?
JS: Losing my hair. It came out in clumps and when that happened, the cancer was real. I realized how important hair is to women.
MR: Taking into account the treatment and therapy what is different for you?
JS: I pray a lot – my faith has strengthened me; I exercise daily; eat smart more of a colorful Mediterranean diet; drink a lot of green tea, soy, and turmeric mixed with black pepper, and do one good deed a day.
MR: Turmeric mixed with black pepper?
JS: Yes, it’s been proven to have the same properties as the drug Avastin. This is also found in Indian and Asian diets where there is a lower incidence of cancer.
MR: What do you think of alternative healing methods?
JS: Alternative-healing in combination with conventional medicine is important.
MR: What type of alternative healing methods do you use?
JS: I do Visual Imaging, Music Therapy, Massage and Yiattis Yoga, which is a meditative Yoga. I also like to laugh a lot because laughing makes you feel good.
MR: Given your experience, do you think we are close to finding a cure for cancer?
JS: Advances are made in cancer treatment daily. In essence, we throw toxic poison at the patient and hope to kill the cancer. In the near future the treatment will be more molecular and more targeted. We will understand the tumor and treat it directly with less patient side effects.
MR: What will it take to turn the corner for this type of treatment? How long before we see it?
JS: A lot of research and clinical trials. Clinical trials lead to the cure. I think patients should join clinical trials, especially for breast cancer. In the next 5 – 7 years we will see a more targeted treatment for many cancer tumors.
MR: What do you hope the readers learn from your story?
JS: I hope that others can be diagnosed early by advocating for themselves and not taking “No” for an answer.
Julie Schaffner, 1954 – 2010
The American Cancer Society is funding $30 million in Ovarian Cancer research, with $820,000 of that occurring in Illinois. There are 28 clinical trials in effect in Illinois. To enroll in a cancer clinical trial visits the ACS clinical trial matching program at: http://www.cancer.org/docroot/ETO/content/ETO_6_1X_Clinical_Trials_Matching_Service.asp
Current clinical research trials in the Chicago area:
The University of Chicago
Rush University Medical Center
Loyola University Medical Center
Cancer Treatment Center of America
University of Illinois Cancer Center
Robert H. Lurie Comprehensive Cancer Center at Northwestern University
Hinsdale Hematology Oncology Associates
Data sources: Cancer Facts & Figures 2009, and Illinois State Cancer Registry, www.mayoclinic.com/health/ovarian-cancer.