Newly Diagnosed with Ovarian Cancer? Start Here.
by Cancer Connect- Dr. Krishnansu S. Tewari M.D.
For many years ovarian cancer has been referred to as “the silent killer” due to its vague, ignored, or misdiagnosed symptoms. Because of this and the lack of early-detection tools, ovarian cancer often goes undiagnosed until it has reached the later stages, when it is harder to treat. Information and support and are key to being an empowered patient and optimizing your treatment outcomes. The following tips will help you navigate a new diagnosis, understand your treatment options and be your own advocate. Have other tips to share? Join the conversation on CancerConnect here.
Q: I have just been diagnosed with ovarian cancer. What steps should I take to ensure that I receive the best possible treatment?
A: Perhaps the single most important thing you can do is seek care at a cancer center where providers have experience treating ovarian cancer. These centers, often referred to as “high-volume” centers because they treat many patients with the disease, are staffed with physicians who have extensive experience in treating ovarian cancer and provide the expertise you need.
- High-volume hospitals and high volume surgeons are more likely to practice and adhere to National Comprehensive Cancer Network (NCCN) Ovarian Cancer Treatment Guidelines; improved survival rates have been associated with patients treated according to NCCN guidelines.
- Seeking care with a high-volume provider will also help ensure that you receive an accurate diagnosis, which is incredibly important. In some cases, advanced cancers of the gastrointestinal tract (gastric cancer, colorectal cancer, hepatobiliary cancer, pancreatic cancer) can mimic ovarian cancer, so receiving an accurate diagnosis that will lead to the most appropriate treatment is key.
Q: Are there current advances in treatment or research that I should be aware of as I review my treatment options?
A: Absolutely. New and important advances include the development of precision cancer medicines, neoadjuvant therapy and maintenance treatment. Be aware that, ideally, chemotherapy should be administered at an NCI-designated comprehensive cancer center. Cancer centers designated by the National Cancer Institute (NCI) are at the forefront of cancer research, so you will have access to the latest clinical trials of novel drugs, including anti-angiogenesis inhibitors and PARP inhibitors.
Q: What steps can I take throughout treatment to help maintain overall health and combat side effects?
A: Some steps you can take include the following.
- Maintain adequate caloric and protein intake. A dietitian who has experience working with cancer patients can help ensure that you are eating the best foods to meet your nutritional needs; inquire at your cancer center if there is a dietitian on staff to assist you, or seek a professional in your community.
- Exercise regularly, according to your ability.
- Maintain regular work hours as much as possible during chemotherapy, as this can help you retain a valuable sense of normalcy and productivity.
- Create a support network of friends and family; also, consider participating in an organized support group to connect with other patients.
- Laugh! The restorative power of laughter cannot be overemphasized; laughing can help you maintain a positive frame of mind, which may just boost your immune system.
Q: What steps can I take to optimize my time with my physician and make sure I am communicating effectively with my care team throughout this journey?
A: Preparing in advance for your appointment can help: write down any questions you want to remember to ask, and consider bringing a close friend or family member to each appointment, even when things are going well, to record the details of your conversation with your doctor.
1) Seek Care from a Gynecologic Oncologist
Perhaps the single most important thing you can do is seek care at a cancer center where providers have experience treating ovarian cancer. These centers, often referred to as “high-volume” centers because they treat many patients with the disease, are staffed with physicians who have extensive experience in treating ovarian cancer and provide the expertise you need.
High-volume hospitals and high volume surgeons are more likely to practice and adhere to National Comprehensive Cancer Network (NCCN) Ovarian Cancer Treatment Guidelines; improved survival rates have been associated with patients treated according to NCCN guidelines.
Seeking care with a high-volume provider will also help ensure that you receive an accurate diagnosis, which is incredibly important. In some cases, advanced cancers of the gastrointestinal tract (gastric cancer, colorectal cancer, hepatobiliary cancer, pancreatic cancer) can mimic ovarian cancer, so receiving an accurate diagnosis that will lead to the most appropriate treatment is key.
A gynecologic oncologist is the only specialist/subspecialist trained to diagnose and treat patients with ovarian cancer.
2) Be Your Own Advocate
If possible, it’s a good idea to spend a bit of time researching your doctor’s expertise and your diagnosis. Make sure you understand your stage, range of treatment options, and role of precision medicine. All treatment is discussed based on stage and testing for precision medicines.
When searching online, always be sure you are getting information from official, reputable medical websites, university sites, or government sites. You can begin to learn about ovarian cancer here and keep up-to-date with research news and helpful tips by signing up for the CancerConnect ovarian cancer newsletter here.
An online support community can be a great resource to help find a doctor as well as to share information and learn about treatment choices with other individuals in your situation. The CancerConnect Ovarian Cancer online support community is safe, private and fully moderated. Join the conversation here. CancerConnect will link you to ovarian cancer patients being treated at leading cancer centers.
4) Be Prepared for Your Appointments
Preparing in advance for your appointment can help: write down any questions you want to remember to ask, and consider bringing a close friend or family member to each appointment to take notes from your conversation with your doctor. Consider using a recorder during your appointment-being able to “replay” the conversation is very helpful. Studies have shown that most patients retain only about 10 percent of what is told to them during an appointment.
5) Be Organized
It’s not unusual for patients to be treated by multiple doctors. To stay on top of the treatment routine, it’s critical to record notes from doctor appointments, questions/answers for your physician, dates of appointments, test results blood cell counts, medications and dosing schedules, prescription refills and other information.
6) Make Sure You Understand the Risks and Benefits of Your Treatment Options
Understanding the risks and benefits of your treatment options is critical to making an informed treatment decision. Your doctor should be able to tell you what your chance of survival/cure is if you elect to receive no treatment and explain how each treatment option improves upon that outcome.
7) Ask about the Role of Precision Medicines
Unlike traditional chemotherapy, which attacks any cell in the body that is rapidly dividing, precision cancer medicine aims to target specific genetic alterations that allow cancer cells to grow. Most or all ovarian cancers result from abnormal genes or gene regulation. The strategy of precision cancer medicine is to define abnormalities at the most basic genetic level. These abnormalities in the DNA are called genomic alterations and they are responsible for driving cancer cell growth. Once the abnormality is identified, genomic tests are created to measure the specific genes in ovarian cancer that are abnormal or are not working properly. By identifying the genomic changes and knowing which genes are altered in a patient, cancer drugs that specifically attack that gene (or the later consequences of that gene) can be used to precisely target the cancer and avoid affecting healthy cells.
A new class of drugs call PARP inhibitors have recently become available for the treatment of ovarian cancer-learn more here.
8) Ask about Clinical Trials
Ongoing research is being conducted to find new treatments for ovarian cancer. By learning about clinical trials you can identify opportunities that advance the treatment of ovarian cancer and possibly benefit your personal prognosis. Learn more about clinical trials.
9) Get a Second Opinion
The more you can learn about your diagnosis and your treatment options, the better chance you have of receiving the best treatment. Getting a second opinion will help you understand ALL available treatment options, and provide reassurance to you and your family that you are receiving the most appropriate therapy. Learn more about why getting a second opinion may be the most important decision you make.
10) Make Sure You Have an Overall Care Coordinator
Everyone needs a single point of contact who is responsible for your overall care. This is typically your gynecologic oncologist. Without a “quarterback” the potential for miscommunication, and frustration is considerable. Make sure you have one primary care coordinator that you can contact with follow-up questions and concerns during the course of your treatment.
Symptoms of Ovarian Cancer
From Ovarian Cancer National Alliance
- Pelvic or abdominal pain
- Difficulty eating or feeling full quickly
- Urinary frequency or urgency
- Additional symptoms include fatigue, indigestion, back pain, pain with intercourse, constipation, and menstrual irregularities.
(These symptoms are not as useful in identifying ovarian cancer because they are also found as often in women who do not have the disease.)
If you have these symptoms more than 12 times during the course of one month and the symptoms are new or unusual for you, see your doctor, preferably a gynecologist. Experts suggest a combination pelvic/ rectal exam, a CA-125 blood test, and a transvaginal ultrasound.