10 Frequently Asked Questions About Ovarian Cancer

For newcomers to the disease, or those just seeking information, finding reliable ovarian cancer resources can be difficult and overwhelming. Here’s a list of a few ovarian cancer questions I frequently hear, with some answers and links to reputable sites.

Have any to add? Share below or start the discussion on our Facebook page!

What do the stages of ovarian cancer mean?

Terms like “stage III ovarian cancer” and “stage IIB ovarian cancer” are confusing and scary, even when explained by a doctor or nurse. A “stage” of ovarian cancer is defined by where the cancer currently is growing and if (and where) it has spread. For example, Stage IB ovarian cancer means the cancer is found in both ovaries, but has not yet spread to other organs (such as the fallopian tubes).

Stage progression is determined by how much the cancer has affected other organs. The later stages generally mean the cancer has gotten into the tissue outside of the reproductive tract. (This is the stage at which most women, including my mom, are diagnosed. I hate cancer!!)

How does ovarian cancer actually spread?

1. By being evil and just invading other tissue.
2. Through the lymphatic system.
3. Through the bloodstream.

Why does ovarian cause so much bloating?

The fluids that surround the ovarian tumor(s), plus the tumor itself, can cause bloating. That’s why bloating is so difficult to consider a symptom, since bloating can cause by so many other things (including stress).

Can ovarian cancer be detected by a Pap smear?

No, no, no, and a more emphatic NO. My mom was at the gynecologist just a few short months before her Stage III diagnosis. Please spread the word!

What did I do to deserve ovarian cancer? Was it because I took birth control? Is it because of something horrible I did at some point in life?

Nothing, and no one knows quite yet, and absolutely not.  There’s some thought that taking birth control actually lowers the risk of ovarian cancer (because it reduces the amount of times a woman ovulates) but there’s no for-sure answer yet. To be honest, my mother didn’t have a history of using hormonal birth control so I personally didn’t see a link. She was a great person who worked hard and was loved by many people, so no, you definitely didn’t do anything to deserve cancer. Ovarian cancer just sucks.

Why wasn’t I able to detect this any sooner?

Because there’s no confirmed screening test for this rampant killer, which is unfortunate, considering how many people are affected by this disease. There’s also chatter among ovarian cancer patients and survivors that their own doctors weren’t even aware of ovarian cancer – and never even suggested it as a possibility when women came to them with concerns.

Where can I go for support for ovarian cancer? I don’t know many other people who’ve had this…and the people I heard about having it all have died!

The last thing anyone newly diagnosed ever wants to hear from people who find out about their OC diagnosis is that “so and so had ovarian cancer, and they died from it”. Believe it or not, (well-meaning?) people seem to love to relate these tales of doom and gloom to current patients and their loved ones, for reasons I have yet to understand. It’s probably the first thing that pops into their minds and they lack the brain-to-mouth sensitivity filter.

Some GREAT resources for you can be found at the Ovarian Cancer National Alliance’s website and I’d personally recommend the discussion boards/online community at inspire.org. Even if you only check in once in a while, the members on the board are constantly sharing their news, their own troubles, and they do like to discuss the latest findings in the medical world, so I’d highly suggest at least checking out the site.

Though you may be tempted to gravitate toward the larger cancer awareness organizations for support (which is great!), don’t forget to do some extra legwork to find out about some of the smaller groups that may exist within your own community – I’m happy to help with this research. I’d also recommend checking out Meetup to see if any homegrown ovarian cancer support groups exist near you. If not, you could consider starting one, depending on the status of your health and energy.

As with anything in life, try not to expect anyone to diagnose you online (a reputable group will direct you to your doctor and care team), but do expect to find groups that are active, welcoming, and very positive. For many women and their families, online support groups become a place of refuge and a place to vent. Try it; you never know who you may meet.

I have children/a husband/a friend/etc. How can I make sure their needs are met?

Kudos to you for thinking of your loved ones, too. Caregivers are often forgotten about during this stressful time, and there’s lots of good resources designed specifically for these individuals. It’s important to take their needs as seriously as your own.

Some great caregiver resources can be found below:

1) Who is a Caregiver? from the National Cancer Institute
2) CancerCare.org provides workshops, online groups, telephone workshops, and face to face support for anyone who has been affected by cancer, including caregivers.
3) Being a Caregiver, from the American Society of Clinical Oncology.
4) Help for Cancer Caregivers, a slightly clunky site with good information.
5) For Caregivers and Families, from the Memorial Sloane-Kettering Cancer Center.
6) Caregiver Resources, from Penn Medicine.

I don’t want to talk about my cancer with anyone. When is the right time to announce my diagnosis? Should I tell my employer about my ovarian cancer diagnosis right away?

This is entirely up to you. Don’t ever feel pressured to share any news with anyone if you don’t have to, but if you’re working during your cancer diagnosis and treatment (or find it better to quit your job), check out some information on working and cancer below:

1) Cancer and Work
2) Cancer and Careers
3) Cancer Survivors at Work: A Generation of Survivors
4) Questions and answers about cancer in the workplace (and your rights), from the Equal Employment Opportunity Commission.

I want to make sure everyone knows about ovarian cancer and tell people to be proactive about their health. How can I get involved?

Check out the 6 Ways to Raise Ovarian Cancer on a budget post I recently published. You can also contact any of the major ovarian cancer organizations and request free information to pass out!

Again, if you felt I left anything out of this list, let me know and I’ll be happy to add to it! Feel free to let me know in the comments below, or start the discussion on the Take Back Teal Facebook page.