As a female Occupational therapist, I have great empathy for women breast cancer survivors* who complete their prescribed cancer treatments.
It is a really, really tough, long treatment.
Women are surviving.
The downside - 50% of these women will experience severe and chronic side effects that may not resolve with time.
In the late 80's, I was a young mother, working part time in the first ever private lymphoedema clinic in my city. I had always been pretty adventurous, had experienced some serious injuries, and found myself with shoulder pain. Over the years, I had tried many different treatments: most did not work for very long. At the clinic, I discovered women after breast cancer also owned a really bad shoulder. I repeatedly thought -my shoulder was bad but theirs was sooo much worse.
What's more, they did not complain: unlike me.
At each clinic appointment, the physical therapist checked that exercises were being done. Tick. Good.
What? Why? Really? IT IS NOT GOOD! SURELY THERE IS A WAY!
Arm exercises were not working- they (and me) needed HELP!
*Breast cancer survivors are 99% women & 1% men
After extensive private and personal research, I was able to help these women (and me) with moderate to severe arm and shoulder pain and chronic restrictions in arm movement. Thankfully, a combination of new soft tissue interentions and training in self- care strategies could help relieve many types of shoulder pain. I discovered the muscle, scar and pain interventions which could be adapted to suit breast cancer survivors.
And then I practiced, listened, observed and practiced more and listened more. Significant changes could be made to help women experiencing pain and discomfort in the years after their surgery.
However, there has been a real lack of awareness and support for breast cancer rehab services- and this is a problem in many countries. What this means is survivors are still ostly getting a sheet of exercises after their surgery and not meeting up with an oncology trained allied health professional unless they develop lymphoedema.
Historically across the world, extensive investment of resources has been made by public and private health systems into research and life- saving cancer care treatment. However there has been very poor care for the 50% of survivors who experience unresolved side effects and complications. The medical team’s total focus on the latest medical interventions, has resulted in insufficient attention to the care required for physical restrictions and limitations that persist.
" You need to learn to live with that" is what women hear, when they do not get a referral for rehab care
A common response to help women after breast cancer diagnosis has been the introduction of volunteer and peer to peer services (eg Breast Cancer Support groups, Facebook groups) . They were able to move into the health systems and provide some support services: hospital goodie bag, make up and loss of hair care, art therapy, massage and meditation.
However these services do not directly address side effects such as chronic fatigue, cognitive impairments, vaginal atrophy + pain, arm movement restrictions, deeply adhered scar tissue and persistent chronic pain.
Over the last three decades, allied health professionals were rarely granted open access to breast cancer survivors in most public and private hospitals. This is a common experience across many countries. In most cancer surgery units, Physical Therapists were allowed to provide a sheet of exercises to people after surgery. And in the lymphoedema clinic, therapists were allowed to care for the <30% of women, who unfortunately developed persistent arm swelling,
Luckily other therapists across the world each did the same research and practice as I had.
PSsst - there are two great men who contributed aswell- Willie Fourie and Emad Besher
New comprehensive rehabilitation services designed to meet the needs of women after breast cancer were initially found in research in the 1990’s. However even now, in many cancer care centers, there has been little change in recovery services offered. Referral to rehab services by oncology doctors, for women experiencing pain, are extremely low. And, facebook groups and chat rooms still actively provide peer to peer advice about recovery.
Health professional WOMEN HELPING WOMEN through social media
To help improve access to breast cancer rehabilitation services, I launched online educational programs. This was a big deal. I had fear and dread for any form of public speaking and being in front of a camera.
Yet, social media, Youtube, was too good of an opportunity for getting the breast cancer rehab message out. I created two Youtube channels and set about developing low cost information videos: one for health professionals and one for bc survors.
Two of my Youtube educational videos have reached 51,000 views combined. This number certainly fades to the numbers viewing cats, dogs and toddlers, however these videos have the potential to change a breast cancer survivor's life.
Next, I designed and shared two international rehab awareness programs. Linkedin (free access) worked for me to share these with unknown international health professional "connections". Every morning, I would ask to connect to the next oncology medical or allied health worker and by three years, I had shared breast cancer rehab information to over 2,500 oncology "connections".
· Share Cording Protocols project 2014 ( 14,000 views)
· Mastectomy assessment survey 2016 ( 25 international breast cancer rehab therapists responded)
Three years ago, I founded an online Summit for health professionals and breast cancer survivors- Breast Cancer Rehabilitation & Wellness. At each Summit, 40+ international oncology expert health professionals (38 women) offered their latest opinions, experience and research of solutions for breast cancer related side effects. Three online Summits are now available for free access, through sponsor websites, so as to reduce the finiancial burden and information barriers for the cancer survivor and their family.
Viewers to the Summits engaged in 3,000- 6,000 presentation "views" over the launch week.
I received feedback like:
"... I have watched/listened to nearly every single minute in absolute awe.
I have learned so much, cried, laughed, raged and ranted!
But most of all I feel a profound sense of relief that it’s not just me desperate to improve
the lives of cancer survivors."
"Two summers ago, after listening to Susannah Haarmann at your conference, I dragged my husband to Asheville, NC so I could schedule a few appointments with her.
..... She was amazing.
My experience with Susannah gave me the courage to be brave and, after spending 7 years trying to decide what to do, I finally bit the bullet a year ago and had DIEP flap reconstruction, getting rid of both of my post-mastectomy impacts forever."
I believe that breast cancer medical care will not change enough over the next 10 years. More and more women will continue to experience chronic pain secondary to their life saving treatment. As a woman and health professional, I will continue to advocate for rehabilitation services and continue to empower women to take positive action to recover better and improve their quality of life.
Other great health professional WOMEN HELPING WOMEN
In my search to connect with others providing breast cancer rehab services , I have found women, like me, who are dedicated to helping women after breast cancer. Hear what these women are doing to help other women:
Elisabeth Josenhans- Physical therapist contributing to cording and mastectomy rehab - see her interview.
Carol Michaels - Exercise after breast cancer ( 3 min interview from 2018-19 Summit)
Dr Anita Elias : Sexuality after breast cancer ( 3 min interview from 2018-19 Summit)
WOMEN CAN help women recover better after breast cancer.
Share links in this blog to your health professional or a breast cancer survivor.