Sexual Health: All of Me — [PODCAST] EP 94

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Cancer and its treatment impact patients in many ways, beginning before a diagnosis and lasting long through survivorship. One, often overlooked, side effect of cancer—whether it be from surgical, medical, or radiation treatment—relates to patients’ sexual health. Hear how one Iowa-based program is addressing the sexual health gap in cancer care by supporting oncology professionals in having these conversations and referring patients to allied professionals as needed.

Guest:

Erin Sullivan-Wagner

A survivor of cancer, life coach for cancer survivors, and co-founder

All of Me

“Most of us are surviving our cancers but left with the side effects that cancer treatment gave us.… because most of us are surviving it [cancer], our new normal oftentimes is riddled with sexual health side effects that are difficult to navigate.”

Resources:

• All of Me: Bridging the Sexual Health Communication Gap in Cancer Care
• Fertility Preservation for Women with Cancer
• Pursuing Quality Cancer Care for Sexual and Gender Minority Patients
• Cancer Care Considerations for Sexual and Gender Minority Patients
• Improving Fertility Preservation Discussions for Adolescent and Young Adult Male Oncology Patients

Transcript

CANCER BUZZ: Welcome back to CANCER BUZZ. I'm your host summer Johnson. Today, why and how to address the sexual health of your patients while in treatment. Over 50% of patients with cancer are left with sexual health issues as a result of their cancer diagnosis and treatment, but less than 20% have these issues addressed. Our guest today says the combination of a patient's state of mind during treatment and the care team's apprehension, or sometimes inability, to address sexual health concerns makes the perfect storm for a communication and care gap that affects a patient's quality of life forever.

Erin Sullivan-Wagner is a cancer survivor and a professional coach for cancer professionals and survivors. Here's our conversation.

Erin Sullivan-Wagner: So I was a cancer patient in 2008. It was an anal cancer patient. I had chemo and radiation, but at the time I was 49 years old, but told that I would have no sexual health issues throughout my treatment because I was young, healthy, and sexually active—is what I was told after my treatment was completed. I was given the, go ahead, everything should be fine to go forward with resuming sexual activity again. And it wasn't okay. I had scar tissue that the radiation had caused that would prevent me from ever being able to have intercourse again.

At the time, I just sought every treatment that they would give me to help figure out what was wrong. And in the end of all of that, what they had determined is that I went too long, which was six months between treatment and it being addressed. And that it being the scar tissue from the radiation being addressed with estrogen cream, suppositories, dilator tools, all those things that I needed much sooner than I got.

CANCER BUZZ: So why isn't it being addressed?  

Erin Sullivan-Wagner: Oftentimes patients in a cancer clinic aren't alone, there isn't a lot of privacy. So there are all these reasons that it is easier to not address it. And from a patient perspective, patients aren't necessarily in the frame of mind to bring up sexual health issues or concerns while they're fighting for their life, so to speak. you know, when we're in the middle of a cancer battle, it really isn't maybe the last thing on our mind, but it's down there a-ways.  

So patients aren't necessarily bringing it up either. And there are a list of reasons why patients don't bring it up, but it really just contributes to the communication gap that's there today. So the NCCN has created guidelines for how to address this in practice that you need to ask questions about someone's sexual health in survivorship. And even though there are guidelines out there, this communication gap is still in place. What we learned providers needed was how can we address this quickly?

How can we give people information that they may need to know eventually, but not address it in an oncology clinic, when we really only have a few minutes with the patient for every visit? How do we bridge that?

CANCER BUZZ: Who's the best person on the cancer care team to address this with the patient?

Erin Sullivan-Wagner: So our target audience of this education is really the patient care team that makes up oncology, nursing navigators, advanced practice providers, radiation therapists, social workers, sometimes people that patient care team may have even medical assistance. And it's to learn how to give that 30-second message to alert their patients to these issues.

Best given when you talk about side effects of the treatment, this is a quality-of-life side effect we taught in the workshops, probably the best place to do this is whenever you talk about those sensitive topics related to quality of life issues, like maybe bowel function or incontinence. Good time to talk about sexual health side effects from their treatment as well.

CANCER BUZZ: Talk to cancer professionals around the country. Why is it so important to communicate about sexual health during treatment?

Erin Sullivan-Wagner: You know, the oncology community has done such a great job with cancer research and survivorship. Most of us are surviving our cancers but left with the side effects that cancer treatment gave us at the time a cancer diagnosis is given in the wake of that sexual health. Isn't on our mind. So as a patient, I'm just looking for guidance from my oncology provider on what I should care about, what I need to be thinking about, make me aware of what's coming, because I'm not thinking about that right now.  

What we do know is that people who survive their cancer eventually want to go back to normalizing their life. They want those same things they had before their cancers. And because most of us are surviving it. Our new normal oftentimes is riddled with sexual health side effects that are difficult to navigate when we weren't expecting didn't know, don't know who to turn to at the time.

And it's very true for me as a patient, but also for the patients that I coached that we didn't know to care about it at the time of treatment. Had we known to expect this to expect maybe not even just sexual function issues, but to expect the body image issues or the loss of libido. Had we known that we would've taken extra precaution in our own relationships.

CANCER BUZZ: For more on Ms. Sullivan Wagner’s story and the All of Me project, you can check out the latest oncology issues journal for the article entitled, All of Me: Bridging the Sexual Health Communication Gap in Cancer Care. That issue is now in your mailbox and online. Until next time, for the CANCER BUZZ team, this is Summer Johnson.

CANCER BUZZ: CANCER BUZZ is a resource of the Association of Community Cancer Centers (ACCC).