Survivors Face A Major Gap In Post-Cancer Care

By Rachel Gotbaum
WBUR

In Massachusetts, 345,000 people are living with cancer today. With earlier diagnosis and more effective treatments, the American Cancer Society expects the number of cancer survivors to climb nearly 40 percent over the next decade.

But cancer patients, while thankful for life saving treatments, are often living with side effects including chronic pain, fatigue and other disabilities. Often times they are told that, post cancer, this is the new normal. But that’s beginning to change.

A Major Gap

At 38, Julie Silver was diagnosed with breast cancer. As is typical with many cancer patients, Silver’s treatment included surgery and chemotherapy. She then became very ill.

“I was really, really sick, sicker than I ever imagined,” Silver said. “I did some exercise testing and I tested out as a woman in my 60s and I was in my 30s. So I had aged three decades in a matter of months through cancer treatment.”

Silver, who is a doctor herself, says after her cancer treatment she was so fatigued and in so much pain that she went to her oncology team for help. She was told to go home and recover.

“I was never offered rehab,” Silver said. “The conversation should have been, ‘We’re going send you to cancer rehab, help you get stronger. We’re gonna try to decrease some of your pain, your fatigue. We’re gonna try to get you back to taking care of your kids and eventually get you back to work to take care of your patients.’ ”

Physical therapist Jennifer Goyette provides lymphatic drainage therapy to cancer survivor Deborah Leonard. (Rachel Gotbaum for WBUR)

Physical therapist Jennifer Goyette provides manual lymphatic drainage therapy to cancer survivor Deborah Leonard. (Rachel Gotbaum for WBUR)

But that’s not what happened, and that’s when Silver realized there was a major gap in the care for people who survive cancer. She says just as patients who’ve had a stroke are offered rehab therapy, so should patients who have undergone toxic and invasive treatment for cancer.

“For example, a woman who has a mastectomy, she might have chemo, radiation, to reconstruct the breast she might have a muscle transplant,” Silver explained. “So she is going to have a lot of scarring, weakness, she may have loss of range of motion. She’ll be in a lot of pain.”

In 2009, Silver, who is a rehab specialist and teaches at Harvard Medical School, created a comprehensive program specifically designed to help cancer patients with rehab after their treatment. She is on a campaign to get hospitals and other health care facilities to adopt her program: Survivorship Training and Rehabilitation, or STAR.

Choosing Rehab

In Worcester, South County Physical Therapy offers this specialized therapy.

On a recent morning, physical therapist Jen Goyette greets her client Deborah Leonard who, two years ago, was treated for breast cancer.

Leonard, who is 56, had surgery to remove a small tumor and then several months of radiation therapy. Soon after she finished treatment she realized something was wrong.

“I noticed I had this lump inside my breast, clearly I didn’t have that before the surgery because the tumor was so small and this was much bigger,” Leonard explained. “And it just kept getting bigger. By night time, my breast was extremely swollen and very painful.”

“More people need to know about [rehab therapy], because you don’t have to grin and bear it. This works.”
– Deborah Leonard, cancer survivor

Leonard’s doctors prescribed antibiotics thinking she might have an infection. When that didn’t work they tried other invasive treatments, including surgery to remove the scar tissue, but the problem quickly returned.

“It debilitates you so you’re just not you as a person,” she said. “You lose interest in everything because it hurts and if you’re hurting, you focus on the pain.”

Doctors were proposing a third surgery but then Leonard discovered physical therapist Jen Goyette through her husband, who had come to South County for rehab after knee surgery.

As Leonard lies on the table, Goyette places her hands gently on Leonard’s shoulders. It doesn’t look like much is happening.

“I’m doing manual lymphatic drainage,” Goyette explained. “We’re going and clearing out routes so that we can have more fluid go through those same routes.”

Radiation, Goyette explains, can block the lymphatic system. This technique can get that system flowing again. Her client Deborah Leonard explains.

“As she works with each section it feels really pleasant. The soreness and that chronic ache, and that’s what I had with all the fluid that was built up, it disappears and it feels awesome. I call this voodoo magic,” Leonard said with a laugh.

‘You don’t have to grin and bear it.’

Leonard received her cancer treatment at UMass Memorial Medical Center. She says doctors there saved her life. Like many state of the art cancer centers, the care at UMass is offered by a team which includes nutritionists, social workers and rehab specialists.

But, says Rebecca Lansky, a rehab doctor here, the focus in cancer care is still on treatment — not on the aftermath. Patients have no place else to place to turn.

“I have a patient who had squamous cell carcinoma of the tongue had radiation to the whole jaw and neck so he couldn’t open up his mouth for six months,” Lansky said. “And he kept going to his oncologist saying, ‘How can I get better, what I can do?’ And he finally got referred to me and we are now opening up his jaw six months later. That, to me, is a hole.”

A study published in the Journal of Clinical Oncology found that 90 percent of cancer patients should be referred to rehab but only one-third are. There are signs that is changing.

The STAR program, which offers rehab for cancer patients nationwide, is growing. The program is now in about a dozen facilities here in Massachusetts and can be found in almost every state in the country.

Breast Cancer survivor Deborah Leonard — who endured more than two years of pain and disability from her treatments — says she may not have suffered had she known about this type of therapy sooner.

“I have had, in these three sessions, absolutely amazing results. I have a six inch mass that is now down to half its size I’m sleeping at night. I have energy again,” Leonard said. “More people need to know about this because you don’t have to be a martyr and grin and bare it, this works.”

The Commission on Cancer, which accredits cancer programs in U.S. hospitals, this year announced new requirements aimed at improving care for the growing number of cancer survivors, including better access to rehab therapy.

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  • eliza

    Thank you Drs. Julie and Jennifer for noticing and doing something about this growing problem affecting hundreds of thousands, if not millions, of people. Sadly, it looks like one really has to experience the consequences of these toxic treatments to be concerned enough to want to address them. Since breast cancer treatment, I’ve experienced internal keloid scarring and tissue damage due to the radiation, GI problems and weight gain due to chemo and now joint, muscle and nerve damage from the subsequent anti-estrogen drugs. I’ve seen thousands of similar patient reports of devastating, crippling sequela from Femara, et al on websites like “ask a patient,” but they don’t ever mention rehab services. I’m a Cambridge patient at MGH. What do you suggest?

  • Robert Weiss

    It is unbelievable to me that a rehab therapist can talk about swelling and lymph drainage and not say the word “lymphedema”. Lymphedema affects any part of the body which has been subjected to surgery and then radiation. It is not limited to arms and legs. According to researchers (e.g. Ronka 2004, 2005) risk of clinical breast lymphedema as a sequela of lumpectomy and tangential radiotherapy is 23%, and increased skin swelling, a sign of pre-lymphedema, exceeds 70%. Manual lymph drainage is the primary treatment for breast lymphedema. This is not “voodoo magic”. It is standard lymphedema treatment being used in Europe for over 50 years, and just now being discovered in the U.S. Perhaps it will some day be incorporated in the curricula of physical, occupational and massage therapy schools and medical schools. Until then it can be acquired in many lymphedema therapy schools in the U.S. and Canada.

    • Jennifer Goyette

      Great comments Robert. Unfortunately the piece did not air/include much of the interview that included what lymphstasis and lymphedema is. I am a CLT (certified lymphedema therapist) and treat pretty much any of my oncology patients with many of the interventions that are part of CDT (complete decongestive therapy), knowing that the lymphatic system is so substantially insulted and permanately damaged after cancer care. So I did mention lymphedema, and am often the first person to diagnose a patient with abdominal, pelvic, pubic, facial and breast lymphedema. Thank you for pointing such a large point out. I fully agree.

      • Jennifer Goyette

        Also, I wanted to mention that in my interview I was also trying to open the doors for cancer rehab to those who “don’t have lymphedema” as I have seen many people years after treatment who went without referral for rehab as they didn’t have any visual edema. I incorporate MLD along with extensive MFR and scar tissue work to maximize tissue health as a whole, and then complete treatment with graded exercise to address many of the other issues that are often present. I hope these points have regained some confidence that there are PT’s out there who understand the whole picture- and treat accordingly. Thank you again.

  • low on energy

    Would a bone marrow transplant patient benefit from seeing a lymphedema therapist?
    A lack of stamina is the issue here.

    • Jennifer Goyette

      Absolutely. All of the latest research is showing that using a graded exercise and rehab approach significantly reduced the occurrence and severity of reported fatigue. Not to mention any other side effects that may linger after biopsy, resections, radiation and chemotherapy.

  • Elizabeth Terhune

    As a fellow lymphedema therapist and an oncology massage therapist in central Massachusetts, I have been supporting and cheering for the patient care, education, and advocacy that Julie Silver and Jennifer Goyette have been providing for oncology patients during and after cancer treatment. They exemplify the standard of care that should be available to all individuals navigating their lives post-cancer treatment.