If you’ve been diagnosed with ovarian cancer, you probably have a lot of questions. You’re likely also wondering what ovarian cancer resources are available to you, such as clinical trials and support groups. Below we discuss what questions you may want to ask your doctor, where to find current and compatible clinical trials and registries, links to possible support groups, and suggestions on how to cope.
Helpful Ovarian Cancer Resources
Knowing that this is not an easy time for you, we wanted to help by offering you a “one-stop-shop” for resources and information about ovarian cancer. Check out our full article on Ovarian Cancer to learn more about the disease, causes, genetic links, and treatments available.
Tips for talking with your doctor
If you have symptoms and/or risk factors and want to discuss screening or diagnostic tests with your doctor:
- Write down all your symptoms, when you began experiencing them, if they’ve increased in frequency or severity, and if there are other things in your life that could affect these symptoms (life or diet change, illness, menopause, birth control, pregnancy, fertility treatments, etc). Be as thorough as possible!
- Write out your personal and family histories of cancers or reproductive-related diseases or issues. Breast, colorectal, and ovarian cancers and endometriosis are the most important ones to include. If you know if your family members have any history of mutations in cancer susceptibility genes (especially BRCA1 and BRCA2), include these as well.
- Write down any and all questions you have. For example:
- What are the possible causes of my symptoms?
- Am I at high risk for ovarian cancer?
- What screening procedures are there?
- Do I need to do any further testing?
- What is my next step?
- (If your doctor is not concerned) In the future, are there specific symptoms that I would need to see you right away for?
If you have been newly diagnosed with ovarian cancer, here are some questions you may want to ask your doctor:
- What grade and stage is my cancer at right now? What does that mean for my treatment?
- Has the cancer spread, and if so, where is it located?
- What are my treatment options?
- What are the side effects of these treatments? Are there ways to decrease the side effects, and will those side effects linger after treatment has ended?
- Are there clinical trials available that you think I would be a good candidate for?
- How does treatment fit in with my everyday life? Can I continue working/parenting like normal?
- Are there any dietary or lifestyle restrictions that you would suggest?
- How much will treatment cost? Are there foundations or organizations that could help me pay?
- Will my insurance cover some of the cost of treatment?
- Will I need to set up some sort of payment plan?
- How often would treatments occur, and for how long do I need to participate?
- Can I receive treatment at a location near where I live, or do I need to travel somewhere else?
- Will any treatments require me to stay overnight in a hospital?
- Do you have any suggestions for how to break the news to my family? Are there certain things that I should ask for help with?
- (If you still are considering pregnancy) Will I be able to conceive after this treatment?
- (If you are close to menopause) Will this cause menopause to start earlier or later than expected?
- (If you’ve already been through menopause) Will I need any hormone replacement therapy after treatment?
There are definitely a lot of questions, so don’t feel bad asking even more than this. Your doctors and treatment team are here for YOU! You deserve as many answers as they can give and the best quality of care.
If you’re unsure about a diagnosis or treatment plan, you do have the ability and freedom to obtain a second or third opinion.
What are clinical trials and how can I enroll in one?
Clinical trials are research studies that help a researcher determine the safety and effectiveness of a new process or medicine. A clinical trial can fit into quite a few categories: prevention, screening, diagnosis, treatment, supportive care, and genetics. Clinical trials are organized in phases in which each phase (the first 3 of 4), a higher number of patients are treated/tested. All drugs that currently are used to treat ovarian cancer have come about through clinical trials. The biggest thing to understand about clinical trials is that they are NOT just for women who have not found success with any other treatment regimen – it is open to those currently undergoing treatment and for those with a new diagnosis too!
Most of the costs associated with clinical trials will be covered by the study. Other things such as routine doctor’s visits and tests that may or may not have to do with the trial may be on your own tab. If you’re worried about the cost of clinical trials, you may be able to get your insurance company to cover those costs. If you can get documentation that the trial may be “medically necessary,” that it is potentially beneficial to your health, letters from advocates, and medical information from the researchers involved, this may help speed the approval process along.
It is important to note that you may not be eligible for all or any clinical trials. Different studies may have specific age requirements or treatment background requirements, or they may only be looking for patients with a specific genetic mutation in a cancer susceptibility gene. This is why it is necessary to talk to your doctor and learn about the specifics of your situation.
There are quite often clinical trials available for ovarian cancer-related therapies. To learn more about what clinical trials might look like or mean for you, visit the National Ovarian Cancer Coalition’s (NOCC) page on what to expect. Check out what might be available to you here:
- The American Cancer Society’s clinical matching service at 1-800-303-5691 or visit their website here.
- Through the National Institutes of Health (NIH), you can search for active clinical trials related to ovarian cancer here.
- The National Cancer Institute (NCI) has a search tool for their supported clinical trials here.
- Search the NIH’s Clinical Research Studies database of current trials here.
- You can join a registry that gets you on a list for any studies or trials that come available. Have your information out there and ready. One such general registry is Research Match, and you can learn more at ResearchMatch.org.
Keep in mind that not all clinical trials will be a match for you or be successful in treating cancer. This is especially true if you are pregnant at the time of diagnosis and treatment. It is crucial that you speak with your doctor if you would like to pursue clinical trials.
I’ve been diagnosed with ovarian cancer. Where can I find help & support?
First, let us be one of the first to say that we are sorry to hear about your diagnosis. We hope that you are able to get connected with the best doctors, hospitals, support groups, and treatments out there. Our mission statement includes supporting reproductive wellness, and so we are here for you too.
There are support groups, peer support, informational organizations, research groups, and much more available all throughout the nation. Here are some resources you can check out to find support near you:
- Ovarian Cancer Research Fund Alliance (OCRFA): Visit their Resources for Patients page to find community groups, peer-to-peer support, informational webinars, and more.
- The American Cancer Society (ACS) has a 24/7 support line providing a safe place to talk and/or receive resources available to you at 1-800-227-2345. Visit their Support Programs and Services page to find a wide variety of resources available to you.
- The National Ovarian Cancer Coalition (NOCC) has local chapters you can reach out to for support by searching here, or you can give them a call at 1-888-OVARIAN (682-7426) to connect with other available resources.
Suggestions on How to Cope
- Take care of yourself! Don’t think just about cancer – remember that the more you take care of the rest of your body by eating healthily and staying active (follow your doctor’s orders), the lower your stress and the more your body has to work with. Take time to relax and soak in life with friends and family.
- Confide in someone. You’ve heard the saying that “no man is an island;” well, no woman is either! Let it out – leaving this burden only on your shoulders is not going to do any good. Find someone you trust to talk with about how you’re feeling. This is where the support groups above come in too; you can share how you’re doing, your worries, and your triumphs with others battling the same disease. For some, this might mean pursuing spiritual help, which can be very powerful and comforting.
- Ask for or allow help. Again, this does not mean that you are burdening others. It’s very often that your family and friends really want to help! If people are asking how they can help, try not to let it stress you out. Come up with a list of things that people can do for you, such as:
- Cooking you and/or your family a meal & drop it off without much excitement.
- Taking your kids for a few hours so that you can get some extra rest/other things done.
- Taking you to lunch for casual, non-serious conversation.
- Sending you an encouraging note.
- Seeing if anyone will accompany you to a chemotherapy appointment.
Whatever your situation, know that you are not alone! There are a plethora of resources out there to support you. Don’t be afraid to reach out for help!
Compiled using information from the following sources:
1. Ovarian Cancer Research Fund Alliance (OCRFA): Clinical Trials.
2. American Cancer Society (ACS): Treating Ovarian Cancer.
3. National Ovarian Cancer Coalition: Clinical Trials.
4. Mayo Clinic: Ovarian Cancer – Coping and Support.
5. Centers for Disease Control and Prevention (CDC): How is Ovarian Cancer Treated?
