We’re Treating the Cancer but Ignoring the Woman

You know what I don't think we talk about enough in medicine?

Women's health.

I feel like we are just skimming the surface for the biological differences the fairer sex and men. What's worse, we are completely ignoring the changes in women's health in women with metastatic breast cancer (MBC).

Women's health is generally quiet but with MBC, it's completely forgotten.

MBC effects around 170,000 women in the U.S. Out of the tens of thousands of new cases every year, at least 20,000 will be first diagnosed with stage 4, de novo MBC. A third of women with MBC have lived with this disease for 5 or more years.

MBC is a chronic, life-limiting condition carrying unique implications to women's health that continue long after treatment is finished. There are chronic metabolic conditions, neuropathy, fatigue from the hormones, anxiety, depression, a complete change in how a woman views her body, and adjusting to the new normals with family roles, social activities, and sexuality.

Medicine routinely focuses on the physical presentation and often gets lost treating the source to alleviate the symptoms. When mental health is involved, it truly is best practice to rule out medical first. But just because the physical has been treated doesn't mean that the mental should be forgotten. This article intends to explore the disparities between women with MBC and ALL of the wellness including the mental and sexual health needs that are often minimized or overlooked.

It's easy to exclude this patient population from women's health conversations. When a woman is diagnosed, we're focusing on early detection and treatment. These women are placed in a category of their own given its incurable status. They report feeling left out of conversations and funding is dedicated to early detection and awareness. On my recent trip to San Antonio for the San Antonio Breast Cancer Symposia, I was struggling to find posters regarding women's health. I was about to count on one hand the number of studies I found and all of them were surveys or reviews.

As a woman struggling to understand how funding for women's health research in general has been cut so dramatically, I cannot fathom the loneliness one must feel to hear the silence coming from the other end of science.

One study on women's health and breast cancer looked specifically at women with MBC. The poster wasn't even standing at the board when I found it to ask questions but I was oh so happy to see it. The study surveyed the women, asking them for their insights on sexual health. There were over 1700 responses.

This study found critical gaps in communication and women hungry to talk about getting a piece of normalcy back in their permanently altered futures.

Remember, these are women on treatment for long periods of time, creating uncomfortable hormonal changes. They experience a loss of interest and a desire to have that interest back, dryness, pain, and difficulty with arousal. They see themselves different, with concerns for their body image. And when these issues are overcome, it's questionable on whether an orgasm will happen and a healthy risk for a UTI.

A consistent theme with 64% of these women surveyed: treatment to help wasn't discussed, not even vaginal hormones.

What's more concerning, most of these women felt more comfortable asking Google for help instead of talking to their doctor.

Looking deeper, these are very intimate issues and we are in a healthcare era where men's sexual health is normalized while women's health is minimized.

Side bar: my inner-feminist says this because it's just like a man to not know how to rev up the engine and then act like it's not a big deal when a woman says things are working right... yes, I understand that implies the research is male-led. I said what I said. Put a woman in charge and we'll have the gap closed and decent-sized pockets in all of our pants. And none of those removable paddings in our sports bras. Who did that anyway???

Women have a biological need for sex, too. Women have a right to be well-researched, better-treated, validated, and the right to have the best orgasm of her life - with or without metastatic breast cancer (sorry, not sorry, Mum).

And let's normalize not minimizing women's mental needs. The mentality of "it's normal to be anxious/depressed when dealing with a chronic illness" is a disservice to the patient. Yes, it is normal but it isn't normal to just live with the discomfort. Especially when we have medications to help cope.

Providers need to speak up and not hesitate to ask about mental health and sex. Women deserve it, and women with MBC have earned it. Providers need guidelines, more research on common problems and what's helped, and a general playbook for MBC post-treatment. What we currently have isn't covering the whole patient. Quality of life is more than just the physical symptoms.

Treat the depression and anxiety, ask about self-image, screen for the obstacles she doesn't know all the other women experience, too. Researchers, ask the questions and make the science happen.

No one should be written off because of a diagnosis. Palliative care doesn't equal hospice. If our research doesn't cover the whole picture, our care won't, either.

About the Author

Stephanie Pilkinton, RN, MSN, FNP-C, PMHNP-BC

Founder of Sweet Tea & Science | Nurse Practitioner | Writer | Wellness Advocate

Stephanie is a dual-certified nurse practitioner with a passion for blending evidence-based medicine with everyday life. She believes wellness should feel approachable, not overwhelming — and that a little Southern comfort and curiosity go a long way.

Follow her journey and join the conversation at Sweet Tea & Science.