Helping women discover a holistic approach post-cancer
I always had a love for Pilates and movement. I also knew I was passionate about health so becoming an Occupational Therapist (OT) was an opportunity to work within healthcare, help people and also have lots of flexibility and freedom with career options. So in my final year of OT study, I did my Diploma of Professional Studio Pilates and a 10-week placement in a Lymphoedeme clinic that changed my life…for the better.
For over three years, I worked in the rehab, oncology and palliative care wards in the Queensland Health hospitals in Australia as well as in their outpatient Lymphoedema clinics. This is where I started to notice gaps in the service for a more holistic approach to rehab, Lymphoedema and ongoing wellbeing services.
When we look at the statistics, conservative estimates suggest that around 50 per cent of women diagnosed with Breast Cancer will have ongoing issues (for example pain and/or a limited range of motion) post Breast Cancer treatment in their upper limb and/or breast, while about 20 per cent of women will develop Lymphoedema. This number actually INCREASES with other types of reproductive cancer and we can see Lymphoedema develop in the lower body from that.
So what exactly is Lymphoedema?
Lymphoedema is a permanent and persistent swelling to a body part where the lymphatic system is either damaged, malformed or inhibited. Left untreated, this condition can worsen over time. It is characterised by a protein-rich fluid that can cause swelling, discomfort, skin issues, infection, and impair circulation and movement. Secondary Lymphoedema is Lymphoedema that is caused by damage to the lymphatic system from treatments such as radiation and lymph node removal which are common in cancer treatment.
If I was to try and describe how a client might feel I’d say that this varies greatly. Often people feel a 'heaviness' in the affected limb as well as a tired or achy sensation. They might feel swollen or restricted in their movement. It's not supposed to be painful but lots would say they have some level of discomfort.
It was when I was working in the Lymphoedema clinic that I started to notice the limitations in the service provided to patients. Don’t get me wrong there is a lot of support while people are going through chemo and radiation, but once that’s over, a lot of the support disappears. Some patients receive an assessment for Lymphoedema but many miss out on rehab or upper limb checks. Some fall through the gaps and don’t receive any follow-up for cancer rehab or Lymphoedema assessment at all. The hospital is limited with how much time and service they can offer due to demands so they often don’t provide a lot of the hands-on therapy that’s needed; it’s more about making assessments, provisioning equipment and/or resources and giving referrals. In my opinion, what’s missing is a holistic service where people are followed up after treatment to ensure they are assessed and treated for Lymphoedema, have appropriate mental health support and an ongoing exercise or rehab plan for their physical wellbeing.
It's also important that we as Pilates practitioners also understand what happens for clients in hospital. The focus from hospitals, doctors, surgeons and oncologists is generally just on cancer treatment - which is understandable. There is a HUGE lack of service and support though for people after treatment while they are adjusting to the mental and physical changes in their body which can be long-lasting. This is an area that needs a lot more attention and referral from medical practitioners.
What we see as OTs is that through physical and emotional trauma and stress, people can start to disassociate from their bodies and feelings. This is one of the blessings of Pilates. Not only are people getting the physical benefits of getting back into exercise and rehab, but they’re also starting to support that mind/body connection and build internal awareness in a safe and controlled environment.
Years ago, before much was known about Lymphoedema people were encouraged not to do anything with their arm post Breast Cancer surgery, to ‘baby’ it, avoid lifting, exercise, injections, avoid blood pressure readings as examples. Now that we know more, we know that doing nothing after surgery is one of the WORST things we can do, as lymphatic drainage is reliant on MOVEMENT of the muscles (not pumping of the heart). So this is where we as Pilates instructors can be really supportive; in encouraging safe movement and promoting the functionality of that arm.
One of the things I love to focus on is breathing. Breathing can have such a powerful effect and for a lot of those fighting Breast Cancer, they have extremely high levels of stress to deal with and their nervous systems are on high alert. I often start with gentle diaphragmatic breathing. Not only is this good for the nervous system and core it’s also vitally important for lymphatic drainage.
Sessions will vary greatly, depending on who I am working with. We might do some gentle mobilisation, stretch and strength for the upper body or we can focus on the lower body if they’ve recently had surgery and aren’t able to do much yet.
It’s also good to look at neck and shoulder alignment and function for women post Breast Cancer, as well as postural changes. People may spend a lot of time sitting during treatment, so looking at the hip flexors, glutes and lower body etc for stretching and strengthening can be really helpful. For Lymphoedema, the beauty of Pilates is that we can often do a lot of work supine or have the affected limb/s elevated. This is ideal for lymph drainage. Having the limbs elevated will let gravity do the drainage work as they exercise, plus the springs or straps can offload what is quite often a ‘heavier’ limb for them to lift.
In reflecting on my journey I think the gift of being an OT is looking at people as a holistic and functional being with lots of different and important roles in their lives. OTs look at addressing physical, cognitive, emotional and social wellbeing and for this group of people (as with all people) it is so important. I also think working in the hospital system has given me a lot of empathy for the challenges and lengthy treatment processes people go through.
If I have any advice for instructors working with clients going through cancer or Lymphoedema I would encourage them to
- have the confidence to ask questions about their client’s treatment and talk to their treating professionals. Surgeons, physios, OTs as an example, they will be more than happy to provide guidance on any limitations they may have.
- Refer on when you need to. If you see swelling, pain or limited range of movement, ask if they are seeing someone for follow-up to their treatment. You could be the first line of referral.
- Some patients may not know that there are professionals who specialise in this area. If you need a Lymphoedema OT/physio to refer to, you can look on the ALA (Australasian Lymphology Association) website directory.
- Encourage them! Absolutely take it slow and grade their return to exercise within their limits... but also allow them the space to move safely and challenge them to progress. Don’t be scared of movement.
In my experience, these people tend to be loyal Pilates go-ers even after treatment and rehab ends. Cancer is life-changing for people and so many change their lifestyles and health priorities as a result. The most rewarding part for me is seeing people progress. It’s being able to support them through a challenging time but seeing them come out the other side and watching their strength. It’s a really inspiring role we get to play.
Sarah started doing Pilates when she was 15. She had a great instructor who went on to become her mentor. She started doing Pilates to help with her scoliosis and a string of injuries as a teenager. Sarah did her Diploma of Professional Studio Pilates with Polestar Pilates and currently owns Recover Wellbeing - Pilates and Holistic Health Studio in Currumbin in Queensland, Australia. She’s also organising a Cancer Wellbeing Expo on November 18th, 9am - 1pm at Elanora Community Centre on the Gold Coast.
