Helping Patients Find a Bosom Buddy

An interview with Sharon Henifin, co-founder and executive director of Breast Friends™, an online, one-to-one breast cancer support network.

Why are patient education resources about breast cancer so important?

Patient resources are important to a person newly diagnosed because I don’t think anyone thinks that they are going to be the one who’s diagnosed with breast cancer. You probably don’t know a lot about breast cancer until it hits you. Unless it’s been in your family and you’ve lived with it through somebody else, it pretty much blindsides you. It’s important to have resources available for women and their families and friends so they have a better sense of what they’re going through, whether it’s just the surgeries or adjunct therapies, like chemotherapy or radiation, or any of the hormonal treatments later on. It’s just really important to be able to have resources available, both medical and emotional, which is what Breast Friends offers.

How did the idea to create Breast Friends come about?

I was diagnosed in 1993, and my friend, Becky Olson, was diagnosed three years later. I was one of the first people in my circle of friends to go through breast cancer. People were really wonderful at first; I had an outpouring of cards and letters, plants and flowers, and well-wishers in the hospital. Afterward, people got busy in their own lives and they didn’t really understand that what I was going through I would be going through for several months. I was out of work for 11 months, so I was out of my normal element and my social circle. People would say things like, “Call me if you need something,” I guess believing that I would do that, but of course most women don’t pick up the phone when they need something like that.

When Becky was diagnosed in 1996, we were work friends, and I understood how difficult that time would be. Becky’s a very social person, so I knew that the isolation from being sick, going through surgery, and going through chemotherapy would be really hard on her, physically of course, but also socially and emotionally. I tried to do little things to help her out. We were going to school at the time, so I would go over to her home and we would do homework together, I would bring her a milkshake on chemotherapy days because I knew her stomach would be upset, or I would e-mail our work friends on a regular basis just giving them updates on what might be going on. In 2000, she had a scare and we sat together in the hospital waiting for the results of her biopsy; luckily, it wasn’t anything serious, but of course you never know until you go through that process. During lunch that day, we had a discussion about what was missing in the whole breast cancer arena, why both of us had lived through breast cancer, and what we could do with that information. Right then over that lunch, we decided that we were going to create an organization. We came up with a name, decided on a general idea of what we wanted to do, and went back to our offices where I registered the URL and she registered the name with the state; the rest is history.

What is the message you want to convey through Breast Friends?

There are a couple of primary messages that we’re trying to get across. Probably the major one is that no woman should go through breast cancer alone. We have resources available for the women going through breast cancer and also have resources for their friends and family, because as I mentioned earlier, some people will say, “Call me if I can be of any help or if I can do something for you.” Women just nod and say, “Okay,” and then of course don’t follow up and call that person. Women are very amazing creatures; we can do it all most of the time, but when faced with a breast cancer diagnosis like this, it really pulls you up short both physically and emotionally, and we do need help from others. We need our families and friends to rally around us and help without actually being told what to do. We created a list of lots of ideas on our website—things that friends and family can do to help, again without having to be asked or told. It’s important to be able to take that initiative.

What programs does Breast Friends offer?

We have a program called “First I Cry.” It’s a sealed envelope with a welcome-to-the-sisterhood message on the front, and inside is a handkerchief with our logo on it. We have a customized support group piece, so when women are ready to go out into the community, they know where all of the local support groups are. Another piece has some of the ideas I mentioned earlier on ways that family and friends can help in another sealed envelope that says “Give this to somebody who cares,” so women would give that to their main support system. That packet has been called a lifeline by some of the oncology nurses in our area. People see that handkerchief for instance, and they just hold it and cry. When women go through this kind of diagnosis, that is one of the first things they do; they are very emotional. Having the resources all in one place is very helpful for people, especially if they’re in a more rural area where there’s not necessarily a lot of the great opportunities of a metro area.

There are additional programs that we have, which are more appropriate for nationwide support. One is our Volunteer Match program. We get volunteers from all over the country who want to help a woman through her diagnosis. Many times we will get a contact from a woman who’s in a particular area who just needs an e-mail buddy and telephone buddy. We go into our database and see if we have someone who’s had a similar diagnosis or is in an area where they can connect with someone. When a woman is going through this, it’s really helpful to be able to talk to somebody who’s “been there, done that” and come out on the other side as a healthy, vibrant woman who can give back to the community.

We also have the HATS Project. HATS is an acronym for “Healthy Attitude to Survive,” and we believe that keeping a sense of humor through this whole process is extremely important. If women are going through a chemotherapy regiment, many will lose their hair, and women have often told me that is as difficult, and sometimes even more difficult, than losing a breast. They say that it signals to the world that they are going through cancer and that they are going through some horrible thing. Every time a woman sees herself in a mirror, the reflection reminds her that she could be dying. With breast surgery, she can hide that a little bit easier with her clothes. The HATS Project features cute, little baseball caps with embroidered clever, artistic pieces on the front, and we give these to women who are going through the hair loss. We would be happy to have the oncology nurses either refer those people to us directly or have the patient contact us directly.

Why should oncology nurses tell their patients to visit the website?

I believe oncology nurses are able learners; there’s no question about it. Those women and men who work with patients who are going through the cancer diagnosis can use all of the website’s resources at their fingertips. Again, we try to make our website as easy as possible for people to navigate the stories and opportunities and for people to give us feedback. It’s a great place for the nurses to find resources for themselves and also to pass on to their patients.