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Getting health care right

Making a Difference: Breast Cancer Survivor and Activist Helen Michener

At 67, Highmark Freedom Blue member Helen Michener was diagnosed with breast cancer. Now 73, Helen beat her own cancer — and has been an advocate and fundraiser in the fight for a cure ever since.

Her inspiring work as a survivor has inspiring roots. A nurse for decades, including on an oncology floor, Helen had completed three 60-mile breast cancer research fundraising walks before her diagnosis. In 2014, less than a year after being diagnosed, she completed another 60-mile fundraising walk in Seattle. Around the same time, in collaboration with kindred spirit Laraine Forry, she began organizing an annual “Toasting a Cure” fundraiser at a central Pennsylvania winery. In 2015, she added a “Drive Out Breast Cancer” program where auto dealerships throughout the region donate a portion of their sales proceeds during Breast Cancer Awareness Month (October). In both cases, the beneficiary is the Pennsylvania Breast Cancer Coalition (PBCC).

Helen and the “message” backpack for her week-long walk

Helen and the “message” backpack for her week-long walk.

In 2016, Highmark Inc. proudly supported another of Helen’s projects for PBCC: “Freedom from Breast Cancer: A Survivor’s Walk.” During her week-long walk from Philadelphia’s Liberty Bell to the state capitol in Harrisburg, Helen used Highmark’s “Nudge Kit” to gently nudge people to get the kinds of cancer screenings that saved her life.

Before the walk, Helen kindly took time to share her story and insights with strategic communications advisor Wendy Morphew (who inspired and coordinated Highmark’s support of the walk) and me.

Cancer Screening: “Not Knowing Won’t Save You, But Knowing Might”

Wendy Morphew (WM): How did you find out that you had breast cancer? Was it a routine screening?

Helen Michener (HM): Let me backtrack a little. In 1988, I found a lump doing a self-check. I worked as a nurse at PinnacleHealth at the time, and they got me in for a mammogram right away, and then I had a biopsy. The lump was benign. But after that, I very religiously got mammograms.

Coming forward to 2013, at the place I go for mammograms, the doctors read them right away. The doctor saw something he wasn’t comfortable with, so he asked the tech to take more pictures. That’s when I started to get anxious, even though I had no lumps, and nothing on my physical exam was abnormal.

After more pictures, the doctor and I went into this tiny room, and he says, “Do you want to sit down?” I thought, “No, I am not going to be sitting here with him towering over me.” That felt like such a negative for me. So I stood, and the doctor sat down; he told me he saw an area of calcification, and about 80 percent of the time that was normal, but he recommended a biopsy. If it turned out to be abnormal, he said we should still be in good shape because we were catching it in the early stages. He was very good and very positive.

WM: Did you schedule the biopsy right away?

HM: I made the appointment before I left their office. My gynecologist, who always ordered my mammograms, called me the next day to make sure I’d made the biopsy appointment. I appreciated that, because I thought, “Good, they’re not going to let me fall through the cracks.”

At first, I thought, “OK, 80 percent; I have a pretty good chance.” But at the biopsy, the doctor said there were actually two areas they needed to look at, and I just all of a sudden didn’t feel like it was going to be right anymore.

At this place — a radiology group owned by PinnacleHealth — they get you the results in 24 hours, which is great. They said they could call me with the results, or I could come back in. For me, personally, hearing news like this on the phone wouldn’t work, so my husband and I drove back down the next day.

They talk so much about facial expressions and stuff — it was very clear that things weren’t right. I remember saying to my husband even before anyone spoke, “This is not good.” Sure enough, the doctor said, “Yes, we found cancer cells.”

It was too late to call the surgeon’s office that day, but I called them the next morning, which was a Friday, and I got in for an initial appointment on Monday. A week later, I had my mastectomy. So everything went boom, boom, boom as soon as we got rolling.

Don Bertschman (DB): In a speech you gave at a breast cancer fundraising event, you emphasized that “these health care decisions are personal for each survivor.” Did you feel good about the information you were given on treatment options — did you feel like there was shared decision making?

HM: This is a case where my being a nurse changes the story a bit. When our kids were going through college, I worked extra hours on an oncology floor to help pay their expenses. From that experience, I had always thought, if I get breast cancer, I want a mastectomy. I wanted the cancer gone.

So I had kind of already made that decision. As a nurse, I would always say to patients, “You don’t want to have any regrets — you need to feel like you’re doing the best you can with what you know.” I don’t know that we ever think we know enough, and I’m not sure medical professionals think they can ever tell you enough. That’s why I say it’s very personal. I made the decision for a mastectomy, and everyone was supportive — my gynecologist, the surgeon, my family doctor. I would hope that every woman or man facing something like this gets the same. You should get the best information you can, and then when you make your decision, your team should be behind you 100 percent.

WM: So your commitment to screenings really comes from personal experience.

HM: Sure, I often say, “Not knowing won’t save you, but knowing might.” The annual mammogram saved my life. If I had waited an extra year or more to get it, the cancer could have been all throughout my body. There was no lump — there was no way we would have caught it so early without that mammogram.

WM: Why do you think people don’t get screenings? Is it fear or lack of awareness?

HM: Well, thinking about women and mammograms — our whole society is body image. Depending on your age, maybe you’re already worried about your body. Maybe you’re having trouble in your relationship — and you think, I don’t want to add this to it. When you’re talking about a preventive screening where there is no symptom like a breast lump, people may not feel that sense of urgency and it doesn’t get prioritized.

Breast Cancer Fundraising and Activism: Giving Back

WM: You became an advocate as well as a survivor. It’s very visible. I was asking myself if I would do that — and I don’t think I would. In a way, you’re keeping breast cancer front and center in your life.

HM: I come from a family where the idea is that whatever you’re involved in, if there’s something that needs somebody to give back, then you should step up to the plate. That said, my first reaction after having breast cancer was that I didn’t want too many people to know. I didn’t want people to think about breast cancer when they saw me. But I soon realized that I couldn’t go back to the person who’d never had breast cancer. So the way I approached it was to try to integrate the breast cancer into me and make it part of who I was and what I did, and that is giving back to the community that I was now part of. But there are times I don’t tell people I’m a breast cancer survivor, because sometimes I just want to be a regular person.

DB: Even embracing a role as part of the breast cancer community, there are many different things you could do — could you talk a little about your choices in that respect?

HM: Well, first, I feel so good about the fact that PBCC uses their money wisely. So I met with them, and initially, I was thinking more about person-to-person volunteering. But the reality is they needed people to raise money. PBCC has a very small staff, and they have a grassroots partners program where they get volunteers and companies to do the work of raising money, so they’re not taking that out of the dollars raised — and I realized, “OK, that’s how I can help.”

So I made a choice to do volunteer work, but then the choice evolved with the need that was there. My friend Laraine has a brother who owns a winery — and I said, “Hey, maybe we could do a breast cancer fundraiser at the winery.” That was the first one we did on our own.

DB: It makes sense that someone who has the kind of commitment that leads them into nursing would go on to become an advocate — it continues the work of supporting people’s health and providing help. Do you still get some of the one-on-one connections you were talking about as part of your work?

HM: Yes, just from talking with people. As nurses, we’re good listeners — so I feel like people will tell me stuff because I’m a nurse and a listener. Once people hear I’m a retired nurse, they might ask me questions or tell me something where I might be able to help them.

DB: When people find out you’re a survivor, does that lead to people sharing their stories of being a survivor or going through treatment?

HM: Oh, very much so. I remember the first conference I went to, about a year after I was diagnosed. I found out that a woman I’d known was a 20-year survivor. My first question to her was, “Do you ever get over worrying about it?” And she said, “Kind of, but not really.” That gave me permission to be OK with worrying about it! When survivors hear what each other has gone through — even the bad stuff — it helps. The support groups function on that model — it’s helpful to hear how others have managed something, and to tell your stories to someone who really gets it.

DB: You’ve been a nurse, including in an oncology department, and a breast cancer patient, and an advocate who gets to hear many stories from others. Having seen the health care system for cancer from those different angles, what thoughts do you have on how cancer care could be improved?

HM: I’ll say something applicable to many things, not just cancer care, but it’s probably twice as important with cancer care and can impact whether people survive or not: The key is improving how well people can navigate the system.

The system is good at knowing what to do, but it’s not good at supporting the things day to day that get in people’s way and keep them from being compliant with what needs to be done. Transportation, family issues, work issues — someone has a boss who won’t let them take off, so they say they can’t take care of a test or they put off treatment and days or weeks go by. Those things happen and they impact the outcomes. So the patient navigator or case manager aspect of health care is very important. Many people are overwhelmed just trying to survive and then they have to make all these decisions. Somebody has to be there to pick up the pieces. If they don’t have a great support system to do that, it impacts their health and even survival rate. There needs to be a commitment that providing that kind of support is the right thing to do, and at the end of the day, it’ll make a difference in outcomes.

Helen standing outside the capitol in Harrisburg

Helen standing outside the capitol in Harrisburg — the ending point of her week-long fundraising walk.

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