The risk of Lymphoedema

What about lymphoedema? There are so many opinions about what causes this, who will get it, what you need to watch out for, how you can ensure you don’t get it.

I had my sentinel (lymph) nodes (in the chest wall) removed and then in a separate operation, where 18 lymph nodes were removed. This was the most painful part of the surgical procedure – 5 days in hospital, 15 days with a drain and months of pain, discomfort and tingling nerves. Fortunately the nodes were cancer free.

I didn’t even think about lymphoedema, especially because I was slim, until my surgeon said to me, “it would be good if you went to see Teresa Lee”, a lymphatic physiotherapist. I couldn’t get into see her, but I did see her colleague, Carol Morris.

There was so much I didn’t know and hadn’t thought about. The first thing she said to me is, “how’s your arm movement?” Well it was okay but it was getting stiff and tight and I found I had hard threads, known as “strings”, appearing in my armpit and down the arm where my lymph nodes had been removed. These were the lines of tissue which were part of my lymphatic system and had been attached to my lymph nodes.

Carol immediately went to work on releasing these. She set up a 5-week physiotherapy schedule and gave me some stretching exercises to do every day. I realised I was going to have to be good at ‘creeping up the wall and hanging off the door frame’ in order to get the full movement back into my arm, shoulder and upper back.  I wasn’t even thinking of losing mobility in my arm. Thank goodness I took immediate action and went to see her quickly. Within two months I had full use of my arm, range of movement and had regained the strength in it.

It didn’t finish there. She asked me whether I was having chemotherapy. “Yes”, I answered. “What’s that got to do with lymphoedema?” The fluid in your body can increase when you are on chemotherapy and lymphoedema can start at any time, even in slim women.

So Carol measured my body fluid levels before I started my chemotherapy treatment. What a great move this was. Six months later I discovered that this had risen from 5.6 to over 13, potentially putting me in the risk area for lymphoedema. More treatment would be needed.

In addition to being concerned about the lack of movement and strength in my arm and shoulder and the risk of lymphoedema, I had considerable numbness throughout my breast, down the side of my body between my armpit and breast as well throughout my shoulder and upper arm. I had fibriotic tissue in these areas which was causing the pain and discomfort. This is the area of my body that has taken the longest to heal. I still have numbness and tingling a year later and this may last for a further year or more.

Throughout my treatment and healing I felt I had angels looking over my shoulder and entering my life. One of those was Lisa Higgins, a massage therapist who specialises in manual lymphatic drainage. She works with my osteopath. She had heard I had recently been operated on for early breast cancer. She asked me to have a cup of tea with her and talked to me about how lymphatic drainage massage could assist in my recuperation.

Lymphatic Massage

I booked an appointment and a fantastic journey began. I had bi-weekly lymphatic massage with her. She drained the fluid out of the affected areas, broke up the fibrotic tissue and stimulated my body’s lymphatic system. Not only did this give me comfort, it gave me confidence in my body and healing.

My therapists were also my confidents, my listeners and advocates. I talked about my fears, my concerns, my ideas and how I was going in each session. This empowered me enormously and enabled me to really trust myself and to listen to my intuition.

A few months after I finished chemotherapy and six months after surgery, during the hotter months of summer, I started to get swelling in my hand and arm, particularly after exercising. This scared me. I rang Lisa, bound my hand and arm and went back to see Carol, the physiotherapist, as soon as possible. A compression sleeve then gauntlet were prescribed to be worn 8 hours a day, especially during and after exercise. I did this religiously and began to reduce the fluid in my arm and hand.

Twelve months after surgery, I stopped wearing the sleeve, except when flying, and got a fluid reading of 5.3. Back to normal!

I gently massage myself when I have pain and am easing back on my treatments. I still have to monitor myself. Lymphoedema could still start at any time.

5 thoughts on “The risk of Lymphoedema

  1. So honoured that I have been able to ride this wave with you. You will inspire many others with how you have travelled and what you have learnt along the way. Would you mind if I reblog on my blog?

  2. This is a really good read for me. Must agree that you are one of the coolest blogger I ever saw. Thanks for posting this useful information. This was just what I was on looking for. I’ll come back to this blog for sure!

  3. It is wonderful when you can find therapist that you feel supported by ..,great work Lisa and all those involved in your care… Keep up the good work and keep that Lymphoedema at bay ..it is so important..

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s