We caught up with Doreen Puglisi, founder of the Pink Ribbon Program, a Pilates-based rehabilitation program for post-operative breast cancer survivors, who explained why Pilates is such an effective form of exercise for this group. Doreen, a survivor herself, holds a master’s in exercise science, and is a Pilates instructor, certified personal trainer and chairperson of the health and exercise science department at Morris County College. Read on for a closer look at what Pink Ribbon provides—for the Pilates community and for breast cancer patients—and a taste of what’s ahead for the program.

Doreen PuglisiHow did you create the Pink Ribbon Program?
I started working with breast cancer patients around 2002. At the time I owned a small wellness studio, and when clients filled out a health history form, I would check the contraindications for programming. That’s when I found out there was no true rehabilitation program for breast cancer patients. Because I’m a physiologist, I looked at the research and at the time, there was nothing. Really, it was astonishing.

Then, in 2004 I was diagnosed with breast cancer myself, and I used my program for my own rehabilitation after a mastectomy. I did have a Pilates background before I was diagnosed. (I was actually trained through Stott.) I truly do feel lucky–I was diagnosed early and had this knowledge base before. It was so scary. None of my surgeons asked me if I needed physical therapy. I thought ‘How am I going to get my range of motion back?’ I had a dorky revelation moment [about creating the Pink Ribbon Program]. I realized that I needed to do something to reach more survivors. I realized I needed to get this out there, and help women who don’t have a rehab or movement background. If it’s hard for me, what are they doing?

Pilates was a great fit for this population: it worked in terms of full range of motion, integrated movement, proper breathing. A lot of what we work with is scapular stability and shoulder range of motion. And in the Pilates world, this was very welcome.

How does Pink Ribbon work?
Well, there are two programs really, for survivors/patients and for instructors. The first is designed as a six-week rehabilitative movement program. The goal is to get them to move beyond Pink Ribbon to a mainstream form of exercise and move forward.  

Modified child’s pose IThe six-week program includes a full health history and a functional assessment. We take that information and create a program specific for the patient. It can be done privately or in small groups, though the assessment is private. It goes in three phases:  In Phase 1, the goal is regaining range of motion and moving pain free. In Phase 2, we’re still focusing on the affected area, but incorporating more integrated full body movement. We want [patients] to feel like a whole person. Phase 3 looks more like Pilates—there’s a strength component. It’s a gradual process, but patients should gain a lot of range of motion after the six weeks, should have a reduced amount of pain, and feel like they’re getting back to who they were before.

The six-week program is with mats and props. Afterward, we start to move the patient onto Pilates equipment. So they might start out as a Pink Ribbon client but then instructors can retain them as a Pilates client. That’s a nice thing for Pilates studios; it’s a client base they wouldn’t have had before.

And how does it work as a certification program?
For the certification program, we usually have a mix of Pilates instructors, physical and occupational therapists, and more recently, oncology nurses. It’s two days long and we travel around the country and do the program in different places—last year we did 15. A good five hours of the workshop is spent on medical background, on staging (cancer is diagnosed in stages 0 to 4), and on the different kinds of surgery. Then we go over exercises and how to segue to regular fitness. I say right from the start, ‘This is a rehab program based on Pilates. It doesn’t matter where you trained. We’re all here to help patients…” 

Modified child’s pose IIWhat are some key things instructors should know when working with breast cancer survivors?
We talk a lot about lymphedema. Lymphedema is the biggest ongoing chronic issue that these patients have to deal with. Not all survivors get it, but about a half-million breast cancer survivors experience chronic lymphedema on a daily basis, according to statistics. They have to be diagnosed properly, which a lot aren’t, so there are probably more. Lymphedema is a buildup of lymphatic fluid due to removal or damage of lymph nodes. So if the lymph nodes are removed, the affected arm has risk of developing lymphedma. And if it doesn’t drain properly or isn’t diagnosed, eventually it can lead to disability. If a patient is at risk for lymphedema, she is at risk for rest of her life. Patients need to be aware of symptoms, so we educate the instructors about them.

Also, muscle is the key to the way that lymph vessels move fluid—muscle massages lymph node, that helps lymphatic system drain and that’s what prevents lymphedema. The best kind of movement is gentle, gradual movement and Pilates is just that. It’s about control and it’s rhythmic and not super strenuous…that’s one of the key reasons why I chose Pilates.

The Pink Ribbon Program focuses a lot on scapular stability, which is very much impacted. There is a lot of soft tissue manipulation in surgery that has an impact on nerve enervation so that impacts movement.

You know, [Pilates elder] Eve Gentry was a breast cancer survivor—apparently there’s footage of Joe training her after her mastectomy. Back then surgeries were brutal, they removed chest muscles…and she regained full movement. So there it is: Pilates works.

What kind of psychological elements are involved in working with breast cancer survivors?
Here in the U.S., there’s not a lot of focus on aftercare and the patient is left on her own to rehabilitate. Cancer beats you up, both physically and psychologically, so the physical filters directly into the emotional and psychological well-being of the patient. There’s a huge psychological component to recovery. There’s research out there that shows that if you’re proactive in your recovery quality of life improves more quickly. You have more control, you have better outcome. It’s a physical, mental and emotional process.

Mermaid with resistanceIt’s complicated…patients usually have more than one surgery, first removal and then reconstruction—and rehabilitation is often harder after reconstruction—then there’s radiation, chemotherapy. All of this has a huge impact. If patient feels well enough, we can work with them as long as the surgeon says it’s okay. It’s up to them take the step; the doctor’s not there saying you need to do it. Chemotherapy and radiation are a catch-22 after surgery, because they wear patients out, but the earlier we get them [post-surgery], the more beneficial [Pink Ribbon] is.

When you are a survivor it’s a different perspective. We have no control over surgeries, chemotherapy, radiation. You’re part of a group you didn’t choose to become part of. Surgery, radiation, chemo doesn’t feel good. So with this, the patient has control over doing something positive, and can gain control over some portion of their recovery. Literally, the Pink Ribbon Program can make you feel better and improve your quality of life. I didn’t realize that until I went through it. When you go through it, the diagnosis consumes part of your life for awhile, so to be able to have something positive in the mix of all that…I can’t begin to explain how good that feels.

Pilates instructors in the program often ask: “How do I know how far to push the client?” We do spend time talking about how to handle that.

What’s on the horizon for the Pink Ribbon Program?
We’ve started to pick up momentum. We’re now in our fourth year, and to date have 350 certified instructors, mostly within the U.S., but a few internationally. We haven’t moved away from Pilates world, but we are starting to incorporate more physical therapists, and we’re getting more hospitals involved. There’s been a lot of new research about the need for rehab for breast cancer patients and hospitals are starting to incorporate breast cancer health centers, which are about treating the whole patient. We’re in several hospitals now and our goal is to expand that. Then when a patient graduates and wants to move on, they can find Pink Ribbon-trained instructors as a segway. It’s been a really great journey. I’ve gone with the flow—wherever this takes me, I go.

Have you done anything special this October for Breast Cancer Awareness Month?
Because it’s our focus all the time, we don’t really do anything special. National Breast Cancer Awareness Month has been a tremendous help. Because of the amount of funds raised, the advancements that have been made in treatment,  I’m sure, have saved millions of lives. I don’t know…last October we did a 14-day breast cancer awareness program throughout Australia. There are all of these women out there who, luckily, through technological advancement, are alive and getting their lives back together. I’ve been doing this for four years and I still feel emotionally moved by stories I hear.

as told to Lauren Charlip, Pilates-Pro.com Managing Editor
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