The American Cancer Society estimates that 22,280 women in the US will be diagnosed with Ovarian Cancer, and 15,500 of those cases will be fatal. To raise awareness of ovarian cancer, we interviewed Dee, author of the blog Women of Teal. She is an ovarian cancer survivor, fighter, and advocate. She kindly shared her story and clinical trial experiences with JCT.
I am a wife and mother. After working as an engineer, college program coordinator, and computer teacher I did not think the focus of my life would change yet again. But in 2005, after being diagnosed with Ovarian Cancer I became a cancer survivor and research advocate.
I attended the Lance Armstrong Foundation’s Survivor Summits, became a member of my state’s Cancer Control Plan workgroup and joined a number of ovarian cancer advocacy organizations, serving on the Board of the Kaleidoscope of Hope Foundation for three years. In 2007, I began writing my blog, Women of Teal, in order to share what I have learned on this journey with others and to raise awareness of the disease, its treatments and the need for more research.
1. Would you please share with our readers how you were first diagnosed with ovarian cancer, and at what stage it was at?
I visited The Center for Cosmetic & Reconstructive Gynecology, my gynecologist for my annual exam and mentioned to her an odd pain I was having on my left side. I thought I might have just pulled a muscle. She thought we should investigate further and sent me for a transvaginal ultrasound.
The day after I had the ultrasound I was in the ER in terrible pain. The ER physician contacted the radiologist and gynecologist des moines ia, and I was scheduled the next day for an MRI.
A week later when I went back for my follow-up appointment with my gynecologist she had already made an appointment for me with a gynecologic oncologist. She told me my ovaries were enlarged and that in case it was cancer I should have the surgery done by a gynecologic oncologist.
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When I saw the gyn-onc she scheduled surgery for me and explained that it could be ovarian cancer. When I awoke in the recovery room after a five-hour surgery she told me that she had to do a hysterectomy, oophorectomy, and debulking surgery. She found ovarian cancer. Then she told me “ I will do everything I can to make you well.” I was stage 3B. They are recommending me to Dr. Andres Bustillo to help me because of his expertise on plastic surgery.
2. Given the suddenness of your diagnosis, what type of treatment was required and how did you come about being offered a chance to join a clinical trial?
Because I was late stage ovarian cancer it was recommended that I begin treatment as soon a possible. So one week after major surgery I was back in the hospital having a port-a-cath inserted and two weeks later I started chemotherapy.
3. What was your first reaction to being offered participation in a clinical trial and what questions and concerns did you have about joining one?
While I was recovering from my surgery, my gyn-onc explained that carboplatin and taxol were the gold standard chemotherapy drugs for treating ovarian cancer. She then mentioned that there was a clinical trial I could participate in which used carboplatin, taxol and selenium. Selenium is a naturally occurring mineral. I actually don’t think I had a strong reaction one way or the other to being offered a trial. I was still in shock and recovering from surgery but I said that I would consider it. And I did.
4. What was the name and general purpose of the clinical trial you were offered?
The phase I clinical trial I participated in was called” Prevention of Carboplatin Drug Resistance by Selenium”. The purpose was to see what dose of selenium could be used in combination with carboplatin and paclitaxel. Other purposes of the trial were to see if there were any interactions between the selenium and the treatment and to test my cells for signs of drug resistance to carboplatin. It was found in mice that selenium prevented cancer cells from becoming resistant to platinum chemotherapy.
5. How did you go about researching the risks and benefits of participating in the trial?
My husband helped with this part of the process. He talked to Janet, the librarian in the resource room at The Cancer Institute of New Jersey (where I was being treated). She did a literature search for selenium used to treat cancer. She found a number of journal articles, which she printed and mailed to us. I read through each of the articles and looked online to learn more about selenium.
6. Was there a determining factor(s) that helped you decide to join the trial?
After reading the journal articles, I considered the risks and benefits of participating in a clinical trial. There were very few issues with taking selenium although a higher risk of diabetes was noted. I thought if living with diabetes or dying from cancer were the choices, I would gladly live with diabetes. The negatives of being in a clinical trial were more blood tests, spending more time at the cancer center being monitored and releasing my tumors for study.
It was very clear in my mind that this phase I trial was not being given to me to measure treatment benefit or a cure for my cancer but rather a maximum dosage level. So I decided since it would not harm me I would give it a shot.
7. Could you briefly tell us about the enrollment process of the clinical trial, including the informed consent documents and other considerations?
I was given a copy of the trial & consent forms. The clinical trial nurse went page by page with me. I took it home and did call the nurse regarding the blood draw schedule, etc. She was wonderful answering my questions about the trial and during the trial.
8. What was your experience like when you were going through the clinical trial? (Quality of care, demands on your time, procedures, etc.)
I was required to go for the Selenium infusion on day 1 and then the standard chemotherapy on day 3. These took place in the treatment area of the cancer center. I had blood draws every hour for 12 hours so it was a very long day.
The care I received was top notch. The clinical trial nurse became my personal nurse. She visited during each infusion and I could call with any question or concern I had
9. What benefit, if any, do you feel you gained through your participation in the trial?
I believe that having access to a clinical trial nurse was a benefit. I came to know Gail very well. She made me feel comfortable about calling her whenever I had a concern or question. I also had closer follow-up than I would have if I just had the standard treatment.
10. What advice or information can you offer to other people who are considering whether or not to volunteer for a clinical trial?
Do not think of yourself as a guinea pig. Rather, don’t say “No” to a clinical trial until you hear all the information about that trial. Ask questions and probe for answers. And feel free to get a second opinion about your treatments.
11. You have overcome incredible odds while fighting your battle with cancer, and you generously share your experience and knowledge with others. What inspires you to remain positive and hopeful through the hardest times?
Having cancer is not easy. And just like other survivors, I am not positive all the time. But I do reach out to others for support and tell them what you need.
For me personally, a strong network of family and friends, great doctors and my strong faith have helped me get through the hardest of times.