3 Takeaways From the Ovarian Cancer Research Alliance 2023 Annual Conference
Recently I attended the Ovarian Cancer Research Alliance’s 2023 Annual Conference, Uniting for Hope. To say the conference was impressive is an understatement. There was a multitude of topics covered over the three days that impacted not only ovarian cancer patients and survivors but other cancer patient and survivors as well. One of the highlights was the closing session, the heartfelt interview with “Life, Interrupted,” NY Times columnist and author of “Between Two Kingdoms,” fellow cancer survivor, Suleika Jaouad. It was impossible not to be wowed by Suleika’s strength and vulnerability as she shares her journey with the world.
On to my takeaways. While I found great value in all the sessions I attended, these three takeaways are vitally important to ovarian and other cancer survivors and the public. They have the potential to decrease the risk of cancer, increase early diagnosis, ensure that cancer patients have the medications and information needed to treat their disease, and ultimately save lives. Here’s what you need to know.
Genetic Testing
While inherited genetic mutations account for only approximately 10% of all cancers, genetic testing is underutilized as a preventative tool. This is one area where we can do better. Why is it so important? In life, as in the cancer world, once you know you are at risk for something you can take steps to mitigate that risk. While genetic testing won’t prevent you from getting cancer, as far as I know there is nothing that can prevent you from getting cancer, if you are at risk due to an inherited genetic mutation there may be steps that you can take to reduce your risk. This includes knowing the signs and symptoms of the cancer you may be at risk for. This knowledge provides you the opportunity to recognize the symptoms and seek medical advice and treatment while the disease is at an early stage. The earlier cancer is detected, the better chance there is to successfully treat it.
The second benefit to genetic testing is that if you know your risk and you do develop cancer, it gives your medical team information so that they may be able to tailor your treatment and options specifically to you. There may be treatment protocols that apply to your specific genetic mutation, or a clinical trial addressing your situation, possibly providing you with the chance for a better outcome or at least more treatment options.
The third benefit to genetic testing is knowledge for your family. If you have an inherited genetic mutation, you received it from either your mother, your father, or both. That means that they have increased risk for cancer, as well as your siblings, children and grandchildren. There also may be a risk to your second-degree relatives, like aunts, uncles, cousins, nieces and nephews. If you have a known inherited genetic mutation, you can communicate that risk to your family member so that they too can take steps to reduce their risk of cancer. Genetic counselors can help if you have concerns about how to talk to your family. You may be saving the lives of the people you love. Talk to your doctor or a genetic specialist about testing. Check out OCRA’s genetic testing, free for qualified individuals.
Lowering the Risk of Ovarian Cancer
Ovarian cancer is particularly difficult to treat as there are no screenings and the symptoms are often subtle until the disease is at an advanced stage. This has led ovarian cancer to be known as the silent killer. Like all cancers, ovarian cancer is not preventable but there is now a powerful recommendation for women to lower their risk of ovarian cancer.
Studies show that most ovarian cancers (70%), start in the fallopian tubes. As far as we know, the fallopian tubes provide no other function than for childbearing. A recently released recommendation asks women who are finished having children, are having another pelvic surgery for a benign condition, or at high risk to talk to their medical provider about preventatively removing their fallopian tubes to reduce their risk of ovarian cancer.
The important thing here is to get the word out and get women talking to their physicians to see if this is right for them. We may not be able to prevent ovarian cancer, but now there is something we can do to potentially lower the risk.
Chemotherapy Shortage
The third takeaway is about the chemotherapy shortage that started about a year ago. If you are not aware, there was a critical shortage of 15 of the most common drugs used to treat cancer patients. This shortage impacted an astounding number of cancer patients. As a result of the shortage, providers had to adjust the doses that were being administered, extend the time between the chemotherapy doses, or change a patient’s treatment plan to a different more readily available chemotherapy drug. In speaking with providers that I know, I learned that some of these available chemotherapy drugs, while similar in effectiveness also lead to more side effects. This impacts a cancer patient’s recovery from both a physical and emotional standpoint. And I can tell you as someone who was not going through chemotherapy during the shortage, as a cancer survivor my anxiety increased as I not only worried about a recurrence, but I was now also worried if there would be medication to treat it.
Drug shortages are not a new problem, but they are becoming more frequent. What I learned at the conference is that these medications that are vital to the life of so many cancer patients are not listed on the FDA’s List of Essential Medicines. The goal of the Essential Medicines List is to have medically necessary medicines available at all times and in an adequate amount to serve patient needs, to ensure production of these medicines, and to minimize potential shortages. Chemotherapy drugs are medically necessary drugs needed to save the lives of cancer patients. They need to be on the list of Essential Medicines.
Shortages are also complex in their origin and solution. For instance, some of the disruptions are due to supply chain issues. Others have to do with manufacturing as there is little incentive for the manufacturers to continue production as many of the drugs are generic, manufactured out of the country, and/or provide a very low profit margin. And when shortages do occur, there is no Federal agency designated to intervene and assist. A clear change needs to happen in this area so that manufacturers have an incentive to continue manufacturing these drugs, and to ensure there is an agency responsible to immediately address the shortage so that cancer patients can receive the lifesaving chemotherapy they need. Lives depend on it.
To find out more visit the End Shortages Alliance at www.enddrugshortages.com and view the Society for Gynecologic Oncology’s webinars on the chemotherapy drug shortage found on their website, www.sgo.org under the News and Resources tab.