A brief history….
Cancer rehabilitation is highly valued by people who have cancer diagnoses and the evidence is mounting that patients who receive the services they need, do very well.
In 2006 The American Cancer Society estimated that 1.4 million Americans were newly diagnosed with cancer and predict that as we live longer and our populations age the incidence and prevalence will only increase. The probability of a man getting cancer (not counting skin cancer) is now 1 in 2, while for women it is 1 in 3. Unfortunately experts predict that women’s incidence will increase as will the incidence of our young people, today’s “obese generation”.
Thanks to increased awareness, screening, early diagnosis and treatment, Gerber et al (2001) and many others have reported that the five year survival rate is now more than 50%. In fact many of today’s cancer patients are living long lives and this is why cancer is now viewed as a chronic rather than a deadly illness. As a busy cancer rehabilitation Physical Therapist / cancer survivor myself, I am learning, relearning and sharing with my clinic patients and now you my readers what our cancer thought leaders and researchers are saying about prevention and cancer rehabilitation and what we can do every day to help ourselves. I want to do the best I can for myself and my wish for you, is that you can too.
Mastery in the self-management of your chronic disorder is the goal.
With this view in mind, I have organized this website so you can read and learn about cancer rehabilitation. If you have a comment, wish to share your self-management tips or have a question please email me . I encourage you to make this site work for you and our readers and to ask questions. I will do the research and respond with the best evidence available. This back and fourth will help us develop in writing to specific issues and develop more relevant content for our readers. If you would like to sign up for our Newsletter please sign up here.
Topics I have selected to include on this website are designed to address the practical steps patients can take to address the common issues they may face. This includes, before, during and after treatment, the first three months post treatment and then beyond as you return to sports and recreational activities. I am a Physical Therapist, other members of the team can provide you with psychological support, pain management, dietary support, weight management etc. As a Physical Therapist my focus is your physical well being and quality of movement through education, mobility, strength and independence. This site is about you being educated about the practical things you can do at each stage of your treatment so you feel well informed, relaxed, proactive, confident and safe in your exercise and rehabilitation decisions.
Topics included thus far are:
- A brief history of cancer rehabilitation.
- Cancer treatment and exercise.
- Cancer survivorship and exercise.
- Cancer prevention – new directions.
- Mindfullness and exercise.
- Posture and core stability and exercise.
- Unrestraining the breath and breathing exercises
- Leg liposarcoma surgery and radiation fibrosis and exercise
- Leg liposarcoma surgery and lymphoedema and exercise.
- Leg liposarcoma treatment and low back pain
- Lung cancer treatment and exercise.
- Breast cancer treatment – the first three months post – breast cancer surgery and breast reconstruction.
- Breast cancer treatment and shoulder pain and exercise.
- Breast cancer treatment and lymphoedema and exercise.
- Breast cancer treatment and cording or axillary web syndrome and exercise.
- Chemotherapy and aerobic exercise.
- Chemotherapy induced peripheral neuropathy (CIPN) and exercise.
- Cancer Related Fatigue (CRF) and exercise.
- Radiation Fibrosis Syndrome (RFS) and exercise.
- Cancer treatment and osteoporosis and joint pain and exercise.
- Eye cancer treatment and exercise – “Gymnastics for the Eye and the Brain”
- Head and neck cancer treatment and exercises – “Jaw Stiffness and Trismus.
- Gynaecological cancer treatment and exercise.
- Gynaecological cancer treatment and lymphoedema and exercise.
Starting in 1965, much of the credit for the development of rehabilitation for cancer patients can be traced back to Dr Howard Rusk the founder of The Rusk Institute of Rehabilitation Medicine in New York who spoke about the multiple needs of cancer patients at the first Cancer Conference on Rehabilitation in that year. Cancer Rehabilitation he said has three priorities (1) continuity of care (2) a team approach and (3) making quality of life the desired outcome of the team’s treatment.
In 1978 Lehmann et al, published Cancer Rehabilitation: assessment of need; development and evaluation of a model of care. In 1981 Dr Herbert Dietz, Jr developed the Dietz Scale for patient evaluation and published the first text on rehabilitation for cancer patients, Rehabilitation Oncology clarifying which services were most needed and that treatment be goal orientated and vocational.
In 1989, 1994, and 1998 Winningham et al, MacVicar et al and Dimeo et al, published works showing that cancer treatment symptoms, patients stamina and their physical performance of bone marrow transplant patients improved with aerobic exercise. Two groups of bone marrow transplant patients were compared. One group exercised in their rooms with stationary bike ergometers while the others did not. The exercise group showed improved haemoglobin and white cell counts as compared to the non-exercising patients. These results led to aerobic exercise prescription becoming a standard component of cancer care.
In October 1996, Lance Armstrong shared with the public that he had testicular cancer that had spread to his brain, lungs and abdomen. It was the same year I had been diagnosed and I appreciated his disclosure and pragmatic approach. His cancer treatments included brain and testicular surgery and extensive chemotherapy. In February 1997, he was declared cancer free and returned to his professional cycling career. In the same year he founded the Lance Armstrong Foundation. The website wwwlivestrong.org provides a wealth of modules about the deeply sensitive emotional issues common to cancer survivors and is an excellent resource.
In 2001 Dr Lynn Gerber from George Mason University wrote in Cancer Rehabilitation Into The Future, that “rehabilitation professionals are essential for the comprehensive care of cancer patients throughout the phases of their disease and must be trained to manage problems associated with cancer and its treatments”. Dr Gerber suggested that
“cancer is best thought of as a complex, chronic and common disorder” and calls for “collaboration and coordination between the oncology and rehabilitation communities”.
In this way any of the common problems such as post traumatic stress syndrome, frozen shoulder, severe lymphoedema, pain, swallowing difficulties, weight loss and fatigue are identified and treated early allowing patients to avoid pain, disability and depression. Today cancer rehabilitation is being offered at top University Health Programs training Doctors, Pathologists, Radiation Oncologists, Oncologists, Nurses, Physical and Occupational Therapists, Speech Language Pathology, Social Work and Psychotherapy, Diet and Nutrition.
In 2003 and 2006 The US Institute of Medicine (IOM) released two seminal reports on cancer survivorship. The first report Childhood Cancer Survivorship: Improving Care and Quality of Life, recommended lifelong follow-up healthcare for all childhood cancer survivors. The second report “From Cancer Patient to Cancer Survivor: Lost in Transition” focused on adult survivors. The latter acknowledges that,
…each cancer survivor has a unique health risk profile following chemotherapy, surgery and radiation and would benefit from an individualized and systematic plan for lifelong surveillance for recurrence, screening for treatment side-effects…
(e.g. shoulder pain, lymphoedema) and promotion of risk reducing lifestyles with targeted counseling and education. Cancer survivorship as a topic is a separate topic from Cancer Rehabilitation, I will be posting a page on survivorship in the near future so please check back.
In the general population, Physical InActivity (PIA) is linked with an increased risk of heart disease, diabetes, osteoporosis and all cause mortality. In 2005 Ganz and colleagues highlighted how young breast cancer survivors face an increased risk of these conditions. Fortunately Holmes and colleagues also in 2005 reported that…
…Physical Activity (PA) appears to reduce the risk of death from cancer treatment and improves weight maintenance and loss, cancer related fatigue, osteoporosis and bone metabolism.
Demark and colleagues also in 2005 surveyed prostate and breast cancer survivors and reported that 58% reported doing regular exercise but 42% did not.
In studies about the emotional effects of a cancer diagnosis and its treatment surgery, chemotherapy and radiation, researchers including Hegel et al, 2003, and Mehnert et al in 2007 found that…
…post-traumatic stress symptoms and disorder are common among adults diagnosed with cancer.
These studies recommended clinicians being sensitive to the concerns expressed by survivors and referring patients appropriately for treatment and support. In fact, Kevin C Oeffinger contributing author to the excellent book Cancer Rehabilitation Principals and Practice by Stubblefield and O ‘Dell (2009) advocates for routine screening by the team for psychosocial problems. He advises that “addressing fears and concern, providing counseling, and managing psychological morbidity are some of the most important ways to maximise the health of a cancer survivor”. Dr. Kevin Oeffinger works in Memorial Sloan-Kettering Cancer Center and is Chair-Elect of ASCO’s Cancer Survivorship Committee.
There is a growing number of high quality online resources some more suited to the public. I will be posting a separate page about online resources so please check back for that information.
In 2009 MSKCC Doctors
…Stubblefield and O’ Dell published CANCER Rehabilitation – Principles and Practice (2009 Demos Medical Publishing),
a rich resource for Oncology/Rehabilitation teams. Experts in oncology, surgery, radiation and rehabilitation convened to share their knowledge and opinions on a wide variety of topics. This included pain management, therapeutic modalities, therapeutic exercise, complementary therapies, cancer related fatigue, swallowing and communication dysfunction, lymphoedema, osteoporosis, graft versus host disease, chemotherapy induced peripheral neuropathy, radiation fibrosis, sexuality issues, nutritional care, cognitive dysfunction, bowel and bladder dysfunction, balance and gait problems, metastatic cancer, computer adaptive testing (CAT) of patients function and levels of independence and much much more.
In 2012 Physical Therapist Jill Brinkley and colleagues published…
…A Prospective Surveillance Model (PSM) for Rehabilitation for Women with Breast Cancer in the Journal CANCER (Vol 118/ Issue 8 April 2012).
This work contributed to the National Institute of Health (NIH) and The American College of Surgeons Committee on Cancer considering including Cancer Survivorship Care Plans and Cancer Rehabilitation in the emerging accreditation process of cancer centers throughout the United States.
In 2013 the Rehabilitation Team at Memorial Sloan Kettering Cancer Center (MSKCC) in New York many of whom had also co-authored CANCER Rehabilitation – Principles and Practice, held their first Annual Cancer Rehabilitation conference and in 2014 their second. Contact the rehabilitation department at MSKCC.org in New York for details of this year’s conference
In 2004 Jill Brinkley Physical Therapist in Atlanta, and the co-authors of the Breast Cancer Prospective Surveillance Model hosted a Breast Cancer Rehabilitation conference. Contact http://myturningpoint.org/ for details of this years conference. These conferences were well attended by team members of the oncology / rehabilitation community and indicative if I may suggest, of both the wealth of knowledge our experts have to share and the growing demand from such conferences.
Sharing what we learn….
Since the beginning cancer survivors and their loved ones have been active and organized and are clearly communicating what they need. The number and volume of these voices is increasing every year and gaining momentum. In small towns and villages all around the world active cancer support groups are raising awareness and money for research. Celebrities like Lance Armstrong and Angelina Jolie have generously disclosed their personal experiences to raise the profile of cancer and the standards of care. Now thanks to the Internet, Facebook, Twitter, Social Media, Google Translate, You-Tube captions, websites such as this one here and online forums etc etc, we are now able to share across economic and language barriers to give and feel support for each other. Pretty exciting times indeed!
If you have a question, wish to share your self management tips or wish to comment, please email me hereand I look forward to hearing from you!