CHICAGO (WOMENSENEWS)—Sen. Claire McCaskill, D-Mo., recently announced her breast cancer diagnosis. I can relate. My diagnosis was over two years ago, but breast cancer still impacts me.

The night before my last doctor’s appointment, I dreamt I was diagnosed with another cancer. Maybe that was why tears welled up in my eyes as I sat in the waiting room.

Reminders of breast cancer are everywhere. Advertisements for upcoming breast cancer fundraisers abound on the radio and on television. And of course, the pink ribbon has taken on a life of its own.

While there is much to celebrate for me and the more than 2.8 million breast cancer survivors in the United States, unseen side effects can linger for years. For example, breast cancer related post-traumatic stress impacts up to 58 percent of women. Being a breast cancer survivor is complicated.

One of my physician colleagues recently told me about the breast cancer Survivorship Care Guidelines published by the American Cancer Society and American Society of Clinical Oncology. This is a set of comprehensive, holistic recommendations for clinicians who care for breast cancer survivors.

This needed addition builds on existing guidelines, which either focus on treatment, provide general recommendations about post-treatment care (not specific to breast cancer) or focus on one issue like post-treatment testing or fatigue.

A Complex Business

The guidelines address areas such as surveillance for breast cancer recurrence, screening for secondary cancers, care coordination among providers and staying healthy. Overall, this comprehensive 24-page document describes 27 specific areas of recommendations. As I read through it, the extent to which breast cancer survivorship is a complex business became very clear.

I appreciated that the guidelines address rarely discussed topics such as sexual health, the topic of my last piece for Women’s eNews, and body image concerns. I learned what experts say about how often I should have labs sent and what kind of imaging studies are recommended.

But I was surprised by the lack of evidence supporting the recommendations. The majority (64 percent) of the evidence upon which these recommendations are based rely on expert opinion, observational studies or general clinical practice alone. Only 9 percent of the studies included for review were rated as “level I” or “level IA,” meaning they reflect information from randomized controlled studies, what many consider the ideal study.

I realize many recommendations don’t require a large scale study. We don’t need a randomized controlled study to advise a woman’s primary care doctor to communicate with her oncologist. I also appreciate how much breast cancer research exists. Almost daily there is new information about links to breast cancer. One recent study focused on dietary fiber intake. But more information is needed about preventing known side effects and managing detected problems in breast cancer survivors.

I also was dismayed that nothing in the new guidelines encourage clinicians to cultivate the positive impact of breast cancer. While I wish I never had breast cancer, I do think there are positives to the experience. I appreciate my life more. I have a more optimistic perspective on personal challenges. I think I’m more sensitive when I talk to my patients and their families. Perhaps I’m a better doctor.

I’m not alone. Researchers are also looking into positive psychological changes associated with surviving breast cancer. One study finds 87 percent of breast cancer survivors demonstrate post-traumatic growth.

More Needed

So while the survivorship care guidelines are a great step forward, they are also a reminder that more is needed.

We need more data-driven research about how to monitor and support women who have had breast cancer. Clinicians need better ways of staying on top of the latest research as well as practical approaches to implementing the recommendations. As a society, we also need to acknowledge the positive outcomes of survivorship, in part so that those newly diagnosed, like McCaskill, can cultivate hope as they begin their treatment process.

Finally, we need to find effective ways to disseminate these recommendations to women with breast cancer. Had my colleague not told me about the guidelines, I would not have been aware of them. Information enables women to better advocate for themselves. Knowledge is power.

I’m often asked, “Are you done with treatment?” I never know how to answer that question. If treatment equals surgery, chemotherapy and radiation, then yes, I’m done. But just as the doctor visits continue, so too do the side effects, both positive and negative. From that standpoint, I’m never done.