The Courage of Touch
Massage & Cancer Story

By Kieran McConnellogue

 

Like most attorneys, Jo Anne Adlerstein is a fiend for the kind of research that can make or break a case. So when she was diagnosed with breast cancer in the summer of 1998, she used her research skills to find out all she could about how to fight the disease that invaded her body.

" What I found is that despite the fact that I live near New York City and have been to the top doctors throughout, each doctor - the surgeon, the hematologist, oncologist and the radiation therapist - is concerned with getting rid of your cancer cells," Adlerstein said. "The other parts of your body and the other parts of healing are not necessarily part of their agenda."

It was a big part of the agenda for a woman Adlerstein's research led her to - massage therapist Cheryl Chapman. What research didn't tell Adlerstein was that many bodyworkers, even as recently as a decade ago, would have turned her away. For years, massage and bodywork was contraindicated for cancer patients. Massage schools, mostly fearing that bodywork could spread cancer, largely taught their students to avoid working with cancer patients. The notion is still pervasive in the bodywork community.

"I think it's very common to hear this idea that it's absolutely contraindicated," said Dr. Christopher Quinn, D.C., president of the Boulder College of Massage Therapy in Colorado. "There is such a variety in the levels of massage therapy training in the country that we're a long way off from not only the information being standardized, but the competence and the level of training being standardized as well."

Quinn likens the misinformation over contraindication to the old days of sports coaches, who not only advised athletes not to drink water during activity, but also gave them salt tablets. It's similar with massage therapists.

"Unless it's something therapists do or specialize in, they may not retain that knowledge base," he said.

But as the field of massage therapy matures, its knowledge base expands. And thanks to schools such as Quinn's and therapists/teachers such as Chapman and others, the notion that massage is contraindicated for cancer patients is changing. There are still hurdles to overcome. How massage therapy fits into traditional insurance or managed care coverage is a gray area. And old attitudes about contraindication die hard.

But massage and bodywork are increasingly important weapons in the fight against one of the most prevalent diseases in America today. Therapists seeing clients with cancer tout the many benefits. It reduces stress and relaxes patients. It bolsters the immune system and helps remove toxins from the body. It helps with circulation and restores energy. It reduces pain and minimizes the effects of radiation and chemotherapy treatments. It enhances a patient's body awareness and allows them to direct energy toward healing. And in cancer patients who will die from the disease, it can help ease their final days and hours. Massage therapy is becoming an important arrow in the quiver of those treating cancer patients. The evidence covers a wide spectrum of massage therapists and bodyworkers.

Hospitals are integrating massage therapists into teams of doctors and health professionals. Therapists in private practice are getting the training they need to be able to see patients recovering from cancer or in treatment. In hospice settings, bodyworkers are providing comfort to terminally ill patients and their families. Schools are rethinking the blanket statement that massage is contraindicated for cancer patients and are developing programs to give bodyworkers the specialized training they need.

Researchers are beginning to explore the relationship between massage and cancer patients. And books such as Gayle MacDonald's Medicine Hands: Massage Therapy for People with Cancer are helping guide bodyworkers into previously uncharted territory.

These are positive trends, both for cancer patients and the bodywork community, for the need is great. Cancer is the second most prevalent killer of Americans, behind heart disease. The American Cancer Society estimates that 563,100 Americans are expected to die of cancer this year, more than 1,500 per day. Nearly 5 million Americans have died from cancer this decade. The statistics are grim, but there is a silver lining. An increase in early detection and improved treatment means that cancer is no longer a death sentence. More people are surviving and living with cancer, about 8 million in the United States today, which means a greater role for bodyworkers.

That role is getting the approval of organizations such as the American Cancer Society, which now views massage therapy as an important complementary therapy for cancer patients, although not one to specifically treat the cancer, said Terri Ades, RN, the society's director of health content.

"We know that massage therapy makes everyone feel better, whether they're ill or whether they're healthy," Ades said. "It is becoming more prevalent in the health professional community.

"There are more people surviving cancer than ever before. I see the complementary therapies as an important component of helping the person improve their quality of life. Oncologists are becoming much more aware of the importance of complementary therapies."

A personal experience
Name Withheld by Request

I have been a massage therapist for over a decade. What a shock it was to be diagnosed with breast cancer, Stage III and growing. Some friends who are also massage therapists offered Swedish or similar types of massage. I declined. My rationale was that even though I had Stage III cancer, there were no indications, from the tests, that it had spread. With the theory being that massage aids the circulatory and lymphatic systems, and I wanting them to stay status quo at that moment, I declined bodywork. Another reason I did not want massage was that I felt very nauseous and "gross" (for lack of a better word). The concept of "touch," at that time, was beyond me. I opted for four sessions of chemotherapy, after which the tumor was totally gone, and a lumpectomy. I did not have lymph removal. Please keep in mind that cancer is a complex disease and what works for one individual will not necessarily work for another. I eventually allowed some massage treatment due to severe pain in the shoulder of my affected side. I had 20 minutes of focused work to my shoulder, a Thai massage and a Trager session. These were all toward the end of the four chemotherapy sessions when the tumor was well under control and either extremely small or gone. Post-surgery was a different story. As I slowly started to feel better, I engaged assistance. The first person to work on the "iv" arm did not know that the lightest touch made me cry silently in pain. Touch needed to be slow, conscious and more superficial with attention paid to the fact that my body was still detoxifying and easily overwhelmed. I felt traumatized and fragile. Any touch that seemed inappropriate (ie. too much pressure or work to an area not ready to be touched) added trauma as opposed to healing. After seven months there are still tender areas. I've added chiropractic care, walking and yoga. I welcome touch now. I need the therapist to honor my readiness (ie. she wants to work around the breast tissue and rib case and I'm not ready for that yet). I will be ready at some point and that will be another step in the healing process. I recommend you speak with your client. Follow her wishes. Allow her wisdom and circumstance to determine whether to have massage therapy while she has cancer. Cancer and conventional treatments are painful, harsh and toxic. It takes a year or more to clear the chemicals from the body. That does not take into account the pain memories or traumatic experiences she might have had. Do not judge her choices. She has to live with them, not you, and there are no guarantees from complementary or conventional medicine. Be patient and tolerant. Hormonal and chemical changes can affect her mood and mental condition, concentration, and her ability to speak or remember things for a considerable amount of time. If you can, offer her a discount. Many women lose part or all of their income or have considerable medical bills or special needs bills. Your gift is the honor of assisting someone to integrate and heal a powerful life experience.

Despite the evolution in knowledge and attitudes, the blanket contraindication is deep-seated among bodyworkers. No one is quite sure from where it came. Most guess it had to do with the mistaken idea that massage could either cause cells to break off from tumors and migrate to other parts of the body, or that increased lymphatic activity - resulting from bodywork - promotes the spread of cancer cells. Bodyworkers are cautioned against working the sites of tumors, but as MacDonald writes in Medicine Hands, "The more the medical profession understands how cancer spreads, the more apparent it is that previous fears about massaging people with cancer are unfounded."

Although researchers are still looking at how cancer occurs, most evidence points to a combination of genetics and environmental factors. These same factors heavily influence how cancer cells spread. Malignant cells spread in two ways - they migrate directly to the adjoining site of tumors or metastasize and spread to distant sites. The potential for metastasis in any individual is similar to how cancer occurs in the first place - it is driven by genetic factors that are inherited or environmental factors that are acquired.

While cancer cells do travel via the lymphatic system, MacDonald writes that "many oncologists fail to see how comfort-oriented massage would contribute to the spread of cancer." Massage does not increase lymphatic circulation any more than any of a number of day-to-day activities. If increased circulation led to increased spread of cancer cells, doctors would warn patients against any activity at all, which they clearly do not.

The pendulum that is swinging away from contraindication toward working with cancer patients travels with a variety of cautionary notes. It is not a simple matter of what was once discouraged is now fine. The process of metastasis, or how cancer cells travel through the lymph or blood vessels, is not completely understood. As with any foray into relatively uncharted territory, it is wise for bodyworkers to learn from those who came before.

Cheryl Chapman of Springfield, N.J., is one of the pathfinders in massage for cancer patients. A fourth-generation nurse, she burned out a decade ago on her job as a RN working with oncology patients, which she had done since the mid-1960s. She decided on a career change to massage. In massage school, she was told not to work on people with cancer, which went against her training and experience.

"I had been touching people with cancer my whole career and I said, ‘This is ridiculous'," Chapman said. "I would give them back rubs, I would rub their feet. I don't think I spread anyone's cancer."

Shortly after she opened her massage practice 11 years ago, a friend was diagnosed with breast cancer. Her treatment caused nausea, which Chapman tried to relieve with Shiatsu.

"It didn't take her nausea away completely, but what I found that it did was give her a little more quality of life," she said.

After her friend's mastectomy, Chapman continued massaging her. When the friend later went to a hospice, Chapman massaged her and her visiting family up until her death. The hospice nurses asked Chapman to show them how to massage patients, and her second career suddenly took a different tack.

"It changed my practice and changed my life," she said.

For the past six years, Chapman has been teaching bodyworkers how to work with cancer patients. She is a frequent presenter at conferences and conventions and said demand is such that she could give workshops every weekend. She's spent as many as 30 weekends a year teaching.

" The students who come to me are searching for something and they want to touch people with cancer, just as I did," Chapman said. "But they've always been afraid because they weren't sure how to go about it or what was safe. Or they were taught the same thing - you can't touch people with cancer.

"They're still teaching - and they should teach - that you don't massage someone with cancer," she said. "I agree with that and they're right in teaching that, but what I think they should say is that unless you understand cancer or take some kind of instruction, then you're better off not to do Swedish massage. However, touch is always appropriate - there isn't anyone who is untouchable."

It's also important to work with doctors to gain an understanding of patients' needs and to educate physicians about the benefits of massage, she said.

"I don't take anyone without a doctor's order. They know it's not going to spread the cancer and they know I'm not going to hurt their patient," she said. "But they often don't know what massage is to begin with. They think Helga from the old country is going to come in and beat the living daylights out of them."

Swedish massage is usually not the best for patients in active treatment. But with the proper instruction, bodyworkers, who are far more sophisticated these days than Helga from the old country, can make a significant difference in the lives of people living with cancer. Jo Anne Adlerstein began seeing Chapman shortly after her lumpectomy and axial node dissection to fight her breast cancer.

" Aside from the general benefits of massage and suggestions about other herbal remedies and meditation, I discovered that there are four very clear benefits from me having weekly massages," Adlerstein said. "I took them for granted, but as I visited each of the different medical doctors for return visits and they made comments about these areas, I realized that they were kind of in the dark about what massage could do."

For Adlerstein, the four areas were a minimization in the formation of scar tissue, help in preventing lymphedema (a painful swelling of the limbs common in breast cancer patients), improved range of motion, and the survival of her skin during radiation therapy, which she attributes to herbal moisturizers.

"I had one doctor saying ‘Your scar looks great,' another one saying, ‘Your lymph looks great,' another saying, ‘Your skin is great.' Meanwhile, nobody quite focuses on why it's so great."

Chapman said it can be great when massage therapists do with cancer patients what they do with the rest of their clients - treat them as individuals with distinct needs.

"There is appropriate touch and modalities that you can use that are comforting," Chapman said. "You always have to keep in the back of your mind exactly what your intent is with this person. And the intent for doing massage with cancer is not to heal them or cure them; the intent is to touch them with love and to provide as much quality of life as you can without doing any harm."

Meredith Biegel of Shorthills, N.J., another of Chapman's clients, dismisses the idea that the massages she received as she battled breast cancer caused the disease to spread.

"I think that if massage caused cancer to spread, I wouldn't be here today," she said. "When I would leave Cheryl's, I felt like I was going to live, I was going to make it, I was going to be okay. It gave me a sense of well-being. I felt I was doing something positive for me."

Biegel said she felt so strongly about the benefits of massage that she has accompanied Chapman to training sessions and conferences. At one, in Washington, D.C., Biegel showed her mastectomy scars to more than 200 therapists who had gathered to learn about massage, cancer and its effects. And although she has been cancer-free for two years, she remains wary of its return.

Increasing numbers of cancer survivors like Adlerstein and Biegel means that those who work with them must look at things"through a different set of lenses," said Dr. Cad Dennehy, co-director of the Rocky Mountain Cancer Rehabilitation Institute at the University of Northern Colorado. The institute promotes exercise and dietary intervention to help recovering cancer patients deal with the fatigue which often accompanies radiation, chemotherapy and surgery.

"The scenario given to most cancer patients is to proceed with caution. Clinicians often don't look beyond the scope of what they do," she said.

The institute commonly refers patients for massage as part of a broad program dealing with the fatigue of cancer treatments, which affects between 72% and 95% of patients, depending on the therapy, Dennehy said. Combined with appropriate exercise and dietary changes, massage is an important part of starting patients on a road to returned health.

"If you take the multiplicity approach, there are lots of ways to get at the return to quality of life or to improve beyond that," she said. "Massage helps create the conditions for success, both physiologically and in mind-set. "If you feel better, you exude that to your body," she said.

One of the hurdles for the institute, as well as for many bodyworkers, is convincing doctors of the benefits of massage, exercise and alternative therapies for cancer patients. It is a wide, two-way street which must be traveled. Doctors and other health care professionals must be educated about the benefits of bodywork for cancer patients, just as bodyworkers must be educated about how to work with patients and doctors.

The literature in the bodywork community is helping to bridge the gap. Research studies are appearing in prestigious medical journals and are funded by entities such as the National Institutes of Health. Increasingly, medical publishing houses are recognizing the growing connection between massage and cancer recovery and printing books to meet the interest.

One of the better-received books recently has been MacDonald's Medicine Hands. It takes a comprehensive look at all aspects of the debate over massage and cancer, tackling subjects such as metastasis, recent literature on cancer and massage, how bodyworkers can serve cancer patients, and working in the hospital setting, among others. The idea for the book came from bodyworkers who contacted MacDonald with their fears about working with patients with cancer. She gained experience working with cancer patients and training massage therapists for several years at the Oregon Health Sciences University's Oncology Unit.

"I think the book decided to write me," she said. "Intuitively, I knew it was okay to massage people with cancer, especially after we were asked to massage oncology patients at Oregon Health Sciences University. I started reading immediately about metastasis and I read about it very intently for a couple of years, and wrote about it and kept refining it. The more I read the more I could see that massage could be adapted for people with cancer.

"It just broke my heart to hear cancer patients tell stories about being turned away from massage when I knew that if it was adapted properly, it could be okay and it could be healing," MacDonald said.

The book took four years to research and write, and since its release last May has received a positive response from bodyworkers, cancer patients and health care professionals. MacDonald said one of her primary goals was to give bodyworkers the knowledge and confidence they need to work with cancer patients. It also aimed to dispel the myth that massage is always contraindicated for cancer patients.

"I think it's become a myth that the bodywork community has not looked at deeply," she said. "They've just accepted it, and myths get passed down from one generation to the next, and everybody just assumes it's true."

MacDonald, like every massage therapist who works with cancer patients, advocates a careful consultation with the patient's physician before any massage. If patients have been in remission for more than a year, she generally does not consult the physician. If they are recently diagnosed or in active treatment, she always consults the physician or asks for a note. In turn, she provides doctors with a form that explains massage is just for comfort and relaxation. While she completes an intake with patients on their first visit, just as she would with any client, the more she knows about a patient, the more effective the treatment can be. A knowledge of working with these particular patients and training to achieve that knowledge are essential.

For patients in active treatment, some of the more gentle modalities are encouraged, such as cranialsacral therapy, Polarity or Reiki. But with every patient, there are restrictions for bodyworkers to be aware of. People undergoing chemotherapy or radiation therapy often have low blood platelet counts and therefore can bruise easily. They must be worked on in a light manner. Restriction also comes with patients whose cancer has spread to the bones, which can become fragile and break under heavy pressure.

Another restriction comes from areas of the body massage therapists need to stay away from, such as catheters, tumors or radiation burns. There are also position restrictions for patients who may not be able to lay on their stomach or back.

Tips for Bodyworkers Working with Cancer Patients
(Remember, each patient is unique. These guidelines are a general overview.)

• If a patient has recently been diagnosed, is in active treatment, or is within a year of being declared cancer-free, consult the patient's physician. Bodyworkers should get as much information about the type and location of the cancer, as well as treatments, as possible. If patients have been in remission for a year or more, consulting a doctor is not always necessary.

• For patients who are 2-3 months out from treatment, modalities that may be used include lymph drainage therapies, trigger point therapy, neuromuscular therapy, myotherapy and myofascial release, among others.

• Deep bodywork modalities which require a longer waiting period include Hellerwork, Rolfing, Soma Neuromuscular Integration and Thai massage.

• For hospitalized patients, techniques which can be administered with little or no modification include cranialsacral therapy, Polarity therapy, Reiki and Therapeutic Touch, among others. Modalities that can be used for hospital patients using gentle pressure include acupressure, reflexology, Shiatsu, and trigger point therapy.

• People undergoing radiation or chemotherapy often have low blood platelet counts and can bruise easily. They require lighter-touch modalities.

• Patients with cancer that has spread to bones also require lighter treatment.

• Bodyworkers should ask clients about areas of the body they should stay away from, such as catheters, tumors or radiation burns.

• Be aware of position restrictions. Some clients cannot lie in certain positions.

• Be gentle with patients (physically and emotionally), especially those recently out of treatment.

While working with cancer patients requires a degree of specialized knowledge, the benefits are many, especially for patients in the hospital, MacDonald said. Treatment in the hospital can be a very fragmenting experience. Specialists in one area or another are constantly coming and going through a patient's treatment.

"Massage gives them a chance to piece their body back together again, because for an entire hour they have the same person working with them in a soothing manner, giving them an experience that has a beginning, a middle and end," MacDonald said. "It allows them to rest, and the hospital is not a restful place.

" Consistently, people's pain levels drop, their fatigue levels drop. They feel nurtured and loved and soothed. It calms their anxiety," she said. "Massage can help people reclaim their bodies. After you've been traumatized by illness or injury, you tend to disassociate from the whole body or parts of the body. If you have had a part of your body removed, a lot of times you remove your attention from that area too. Massage can help bring you back into your body so you reclaim your whole body."

Hospitals are increasingly recognizing the benefits of massage. The Hospital Based Massage Network estimates that there are at least 100 hospitals offering massage therapy to patients. In addition to cancer patients, hospitals usually offer massage in chronic pain management and labor/postpartum.

One is Memorial Sloan Kettering Cancer Center in New York City, which has one of the most highly regarded oncology programs in the country. Four licensed massage therapists (two of whom are also registered nurses) offer massage, reflexology and Reiki to patients at the main hospital and at its outpatient center. Other therapists offer mind/body work and music therapy.

Massage therapist Wendy Miner, director of the Memorial Sloan Kettering Outpatient Center, said doctors there have responded favorably to the addition of massage to a broad program of treatment for cancer patients.

"Anything that will assist in making the patient more comfortable, they are in favor of," Miner said.

"The benefits are improved blood circulation, assisting in the removal of toxins, equalizing blood pressure, helping with fatigue and anxiousness. We don't make any claims, but these are common kinds of ways that massage can be useful."

A key to the program's success is communication, Miner said. Massage therapists contribute to patient files about types and frequency of therapy. They also work with nurses, doctors, nutritionists and other therapists to take an integrated approach. If the therapists are unsure about what is contraindicated, they consult with doctors. "It's a team approach, and we're constantly talking to one another," she said.

In both the hospital and outpatient settings, the goal is to help patients return to some semblance of normalcy.

" It does remind them that every day, you're going to feel a little better," she said. "We feel honored to be able to offer them some time in which they feel comfortable again and optimistic."

The hospital expects to expand the program and to continue to ensure that current therapists have the training necessary to work with cancer patients.

"It's a continuing education for all of us. We're learning more and more about this" Miner said.

Schools of massage are one of the keys to the continuing education of therapists, both in the hospital setting and private practice. The Boulder College of Massage Therapy has had a cooperative program with Boulder Community Hospital for about 12 years, said Dr. Quinn. Of the 1,000 hours in the school's typical program, students complete a 60-hour, on-site internship in areas such as sports medicine, industries, hospice or hospital-based programs. The internship is one of the final parts of their program.

" It's very popular. What we find is that when people serve in these internships, they go far beyond the requirements in hours and end up putting in volunteer hours that are two, three, or four times the required hours," Quinn said.

The students work under the supervision of on-site instructors from the school, as well as nursing supervisors.

"The patient feedback is incredible. We get notes and letters from people who say things like this made their hospital stay more tolerable or that this was the best thing about their stay," Quinn said. "Our goal is to model such programs and to introduce the medical world to this bodywork intervention with the goal being that the word will spread and such programs will be incorporated around the country.

"The bottom line is that people who are going to do this type of bodywork need a different knowledge base. It's not really for every massage therapist."

But for those who decide it is for them, the rewards can be great. And for patients such as Adlerstein, massage therapists can be an integral part in their recovery, both physically and emotionally.

"I feel very lucky to have had that emotional support," she said. "A massage therapist who doesn't care about your emotional needs is worthless, because then you might as well go buy one of those fancy machines in the Sharper Image catalog. A massage therapist comes with more than vibrating fingers."

Kieran McConnellogue is a freelance writer in Greeley, Colo. You can reach him at kmcconn@unco.edu.

 

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