I’ve noted before that ovarian cancer is like the poor sister of prostate cancer, with only half the research funds directed its way. Even though ovarian and breast cancer can share a similar pathway via some genetic cancers, breast cancer outshines both ovarian and prostate cancers in federal funding. Perhaps that gap explains the significant decline in mortality for breast cancer patients.

Yeah, I’m going to go on about cancer again because it’s Ovarian Cancer Awareness Month (September) in the US. Sept. 4 is “wear teal day” to help raise awareness of ovarian cancer (OC). I’m taking the concept of awareness seriously, because I wasn’t aware, and even though I’m pretty good at advocating for myself, I had no clue what I should be paying attention to.

That lack of attention to OC might be excused to a degree: it only affects biological women and only about 1.1% of women will be diagnosed with it, according to the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program. It’s estimated that about 21,000 US women will receive the diagnosis in 2026, and 12,450 of us will die from it.

Staying Alive

Ovarian cancer is considered one of the deadliest cancers, up there with pancreatic (which has had some good news recently).

It doesn’t have to be so deadly. Really. And survival has improved significantly over the decades. In 1975 the 5-year relative survival rate was only 34% and more recently that’s improved to 52%. In 2023, when I was diagnosed, 254,621 women were living with OC in the US.

But this survival rate depends on stage. Cancers that have metastasized have only a 31.5% rate of 5-year survival. Most OCs, 54%, are discovered after they’ve metastasized. I’m 3.5 years into that 5-year sentence with high grade serous ovarian cancer. Technically, 70% of OCs and many peritoneal cancers are thought to actually start in the fallopian tubes.

The issue is symptoms and how we respond to them. The symptoms tend to resemble other issues, and are often described as “vague.”  Which means, by the time a woman approaches her doctor, it’s often well advanced.

I’m going to repeat this more than once: there are things we could do, right now, that would improve the outcomes of OC patients. A cancer marker test (e.g. CA125, or Cancerguard) is a fairly cheap and easy first indicator that should be part of routine care for peri- and post-menopausal women, whether they present with symptoms or not, much as we conduct regular mammograms and routine bloodwork with physicals.

And cancer research needs to include funding. The federal government has cut funding by something like $500 million for cancer research, stalling projects and potentially costing lives.

The “cancer moonshot” started more than a decade ago under Obama and continued under Biden, has made dramatic progress against cancer. But research projects take time, staffing, and an incredible amount of money.

Risk

Factors that can increase your risk of ovarian cancer include:

• Age: onset usually occurs around or post-menopause.
• Inherited gene mutations, such as BRCA1, BRCA2, or Lynch syndrome
• Starting menstrual cycle before 12 years old
• Starting menopause after 52 years old
• No personal history of giving birth
• Endometriosis (abnormal growth of tissue that lines the inside of the uterus)
• Radiation exposure to the pelvis
• Tobacco use
• Obesity
• Inflammation: As people get older, our bodies can become more inflammatory, even without an infection. This may raise the risk of cancer.
• *History of using talc powders in genital areas*

I added the last item to this list, though it remains controversial. If you used cosmetic talc like baby powder or talc-based body sprays prior to 2020, you may have an increased risk of developing OC. Some talc sources contain asbestos. Studies have had mixed results, but overall, “genital talc use was associated with … a trend for increasing risk” over time. One study reported that some endometrial cancers, like mine, can be associated with talc. Regular use of talc powders was “associated with a 33% increase in ovarian cancer risk overall while no apparent risk was associated with talc used only in nongenital areas.”

Bottles of Johnson & Johnson baby powder line a drugstore shelf in New York October 15, 2015. REUTERS/Lucas Jackson

A 2025 Journal of Clinical Medicine article notes, “The use of talc-containing powders in the genital area has long been suspected to contribute to the development of OC through inflammatory and irritative pathways; however, the association remains controversial.” Analysis revealed that genital powders were associated with a 30–32% increase in the risk of OC. The analysis finds that the talc particles found in commercial brands are “nearly identical to those retrieved from pelvic tissues in OC patients, supporting the hypothesis of migration” and “[t]he collective evidence supports the biological plausibility that talc from genital powders can migrate to pelvic tissues and potentially foster oncogenic inflammation.”

In other evidence, Johnson & Johnson’s decision to pull baby powder products containing talc from commercial sale indicated its acknowledgement of the issue, according to an editorial comment in the journal Gynecology & Pelvic Medicine.  In 1974, J&J, told the FDA that, “…if the results of any scientific studies show any question of safety of talc, Johnson & Johnson will not hesitate to take it off the market.” A research study in 2020 reported statistically significant ovarian cancer risk in women using talc products. On May 19, 2020, J&J stopped selling talc containing baby powder in the United States and Canada.

There are so many potential environmental contributors to the formation of any cancer. For example, scientists want to know how microplastics might be damaging the ovaries, making it difficult for some women to get pregnant.

Damage to the ovaries, and resulting inflammation, can be contributing factors to mutations that could lead to cancer.

Is my cancer the result of a figurative bath of chemicals that we didn’t know could harm us? Was it those ag chemicals that were in our shallow wells, or when we chased the crop dusters on our horses? Was it the plastic pen caps and aluminum pop can tabs I chewed with the kind of nervous energy that could have gone into a fidget spinner? Was it all those dyes and preservatives that wound me up, like the red dye in my favorite Shasta strawberry soda, or the yellow dye in the 12 pack of Mountain Dew I drank a week?

Was it the baby powder my spouse and I used liberally on our bodies on hot summer days before we had air conditioning?

My cancer isn’t genetic; and felt so random. No one expects this diagnosis when there isn’t a family history of cancer. Was it something my mother was exposed to?

We can spin out chasing it all. The fact is, once it’s there, it often grows silently, making itself at home for months before symptoms begin.

Symptoms

The thing about OC is that not only do symptoms not emerge right away, those symptoms often are attributed to other, more common conditions.

Signs and symptoms of ovarian cancer may include:

• Abdominal bloating or swelling
• Quickly feeling full when eating
• Weight loss
• Discomfort in the pelvic area
• Fatigue
• Back pain
• Changes in bowel habits, such as constipation
• A frequent need to urinate
• Loss of appetite

The first symptom I had was back pain, which I assumed was related to arthritis and sure enough both an MRI and X-ray showed narrowing in the vertebrae that would also explain the numbness running down my leg, probably from a compressed nerve. So, let’s do a spinal injection and see if that helps. It made no difference. (What helped was removing the tumors).

Then came the random stomach pain and increasing episodes of constipation. It started to hurt more and more to pass the poo. My doctor’s office said, let’s try Pepcid. When that didn’t help they offered Prilosec. When that didn’t help they suggested FODMAPS.

I felt bloated. I felt like I had to pee, urgently, when there was nothing there. And intense pain came with using the toilet. I felt tired, falling asleep hours before my normal bed time. I felt full after eating only a few bites and had little appetite.

At least eight months passed before, in agony, I demanded a stop to all the experimental dietary trials. At last, a CT was ordered (expensive) and they took blood looking for two cancer markers (inexpensive). The test for colon cancer markers came back negative. The CA125, which can indicate OC if it is scores above 35, came in at well over 800. The CT confirmed my gut was full of now metastasized cancer, my ovaries swallowed by tumors.

I was advocating for myself, that whole time. But I didn’t know what I should be advocating for.

After three rounds of chemo and debulking surgery, they couldn’t get it all. With three more rounds of chemo and a radiation series on the unreachable tumor, I went into remission.

It lasted 9 months. Ovarian cancer is not one to give up and once metastasized is devilishly difficult to beat.

Awareness

We talk about cancer awareness. It’s understanding that one of the issues is also not taking women seriously when we voice complaints about pain or discomfort. There have been mixed ideas about whether women or men are more reactive to pain or tolerant of chronic pain.

Even though most of my doctors, PAs and nurses have been female, the protocols they follow seem dismissive of the worst-case scenario: throw everything at the wall before we bother looking deeper. If you’re overweight, the focus will be on diet, whether diet is connected or not. (Back pain? Lose weight. Stomach pain? Don’t eat so much. Constipated? You aren’t drinking enough water. Bloated? You’re not eating appropriate foods, etc. etc.)

Explaining pain is another issue. Sometimes we naturally diminish our discomfort. On a scale of 1-10 how bad is it? I don’t know, what’s a 10? What’s a 5? Right now, this might be the worst pain I can imagine, but tomorrow that might change. If I describe a stabbing pain, is that a knife? A stick? Sharp? Dull? By the time I try to explain myself I find myself lowering that number. Well, maybe this is a 3-4. I don’t KNOW. It hurts.

Image from J. Clin. Med. 2025, 14(16), 5746; https://doi.org/10.3390/jcm14165746 found at https://www.mdpi.com/2077-0383/14/16/5746

We’ve made medicine so much of an assembly line to meet insurance provider requirements that few doctors have time to really listen to what we’re saying, and most of us don’t know which symptoms may be relevant. In my case, fatigue was relevant. That didn’t seem connected (to me) to my stomach pain. I didn’t mention it when I should have.

Advocate

Cancer awareness is also about advocating for change.

Hundreds of millions in research dollars have been held hostage by the federal government. The cost of a study is incredible. It requires years to test hypotheses, plan and implement initial research, before making it available for lengthy and staged human testing, which takes even more years.

The recent Moderna/Merck breakthrough in melanoma treatment has taken decades.

The CA125 and/or Cancerguard tests should be part of the standard of care for menopausal women, like mammograms for breast cancer, Cologuard for colon cancer detection, cholesterol testing, or other standard preventive care measures. It’s not an expensive test, and it’s not definitive. But it can reveal an issue that requires more evaluation.

Stop with the fat shaming. It ends up masking real issues that may actually be contributing. I assure you, women who are overweight know it as few people have let them believe otherwise. They know the health risks. They’ve been nagged like a dog on a bone from that first ounce over the line.

It’s not easy losing a pound, even with the GLP-1s out there that have their own suite of side effects. To assume women just aren’t trying hard enough to take care of themselves is insulting. There are many confounding factors for weight gain, from endocrine disruptors that might include food dyes to PFAS.

I’ve lost more than 70 pounds in the last 9 months. How? Starvation. I can’t eat, and nutrition is critical to keeping the immune system in a state that can fight disease, and cancer. My nutrition is suffering, which makes it even harder to endure cancer treatment as the return of fatigue has me flailing to get anything done. I’m consuming often less than 300 calories per day. And yet, I’m still likely over someone’s arbitrary weight meter, while simultaneously experiencing malnutrition and under the guidance of an oncology nutritionist. I literally can’t eat much due to tumors that are inoperable and compressing my colon. We have to hope chemo will eat those tumors. But in the meantime, I need to be strong enough to survive the chemo intended to do that work.

Stop judging. Stop acting like something in our lifestyle caused this. Stop acting like it’s something God delivered for some higher purpose. How insulting to tell a good person that somehow they deserved this! (There are plenty of people I’d wish it on who deserve it more, trust me). Don’t tell me God won’t give more than I can handle. If God delivered this sentence, I’m not a fan. Good people, who try to do everything expected of them, die of this: clearly this is more than we can handle.

Quit telling us that all we need to do is “X.” Not every cancer is the same, as not every person is the same. There are multiple types of ovarian cancer, multiple types of gynecological cancers, multiple cancers, period, multiple stages. The age of the patient, their comorbidities, their health at diagnosis and the onset of treatment: all of this goes into it. I know some people comment out of a lack of knowing what to say or do because they feel helpless. Just like we do. The best thing is stop being judgy. Your anecdotes and treatment suggestions aren’t going to cure my cancer. But they could hurt me.

The Bottom Line

Cancer awareness is remembering statistics are people with families, friends, dreams, hopes, unfulfilled goals and real fear. We’re afraid for those we’ll leave behind, for our futures, for all the unknown discomfort.

What we need is advocacy: people to stand up and demand funding for cancer research be restored, for more investment in mRNA vaccine technology for cancer treatment.

All these recent breakthroughs: there’s hope, but not when we’re the last one through the line with the most fatal diagnosis.

It’s Ovarian Cancer Awareness Month. I hope you feel more aware.

Cover photo Meg Turville-Heitz, Rock Creek, Lake Mills WI, 2026.

Interested in hearing when there’s a new blog post, author event, publication becomes available or even a free snippet now and then?   Sign up for periodic news updates.

There’s always hope, even when it feels like it’s fading. Photo by Meg Turville-Heitz, 2026