Wednesday, 14 March 2012
Lymphoedema Awareness Month
This month of March is Lymphoedema Awareness Month. It aims to raise awareness of the early signs and symptoms of lymphoedema amongst high-risk groups, including cancer survivors and generally amongst our community.
I was one of the lucky ones. When I was actually going through some cancer treatment I was told about lymphoedema, but in that time of pain and concern you do not really take in the message. When the doctors were able to tell me that my cancer did not go into the lymph glands I was relieved but I did not truly understand what that difference was. Certainly, I got the message that it was a good thing, and everyone said it was a good thing; but it was only when I talked to other women who were at the same hospital as I was that I could understand really what the difference was between me and those people who would actually go through the pain, stress and concern of lymphoedema.
Lymphoedema is a common side-effect of cancer related surgery and radiation therapy and affects thousands of cancer patients every year. It is a long-term condition; up to 66 per cent of prostate cancer survivors and one in five survivors of breast cancer, gynaecological cancer or melanomas contract lymphoedema. It can affect people of all ages: men and women, teenagers and children. It is debilitating, it is heartbreaking and it has a profound effect on your life and also on your family. It is absolutely crucial that we have preventative education and particularly early recognition of lymphoedema in our community so that we can work together to ensure we can beat this awful condition. Despite the severity of lymphoedema and its frequency, there are not really exact figures about how many people are suffering through this process in Australia. We know that there are some estimates that say as many as 300,000 people may have some form of lymphoedema. That means that when you look at that large number, there will be someone in your community or your family who will be working through this process and you may or may not know.
Lymphoma Australia is calling on people to raise awareness, to look at how we can get the symptoms of lymphoedema better known and to have greater empathy for the sufferers throughout the community. During March Lymphoma Australia is launching a fund-raising and awareness initiative, inviting individuals, businesses and healthcare workers to raise awareness of the symptoms by hosting an iced tea party to support education and research into lymphoedema. Australians across the country can register today to host one of these parties and to be part of the process. Awareness is a critical weapon in the fight against lymphoedema. We can in fact change lives by raising awareness and raising funds for increased research into the area.
We know that GPs want more information about the condition and we know that patients want more information about the whole process. Lymphoedema is a long-term condition which requires daily physical management, and an early diagnosis can improve the quality of life for people. We can make sure that there is understanding and also effective diagnoses. We know that people who have lymphoedema suffer from badly swollen limbs, pain and immobility. It can also mean changed appearance, altered body image and the loss of everyday life skills, and it is often linked to anxiety and depression. There is no specialised medication for lymphoedema and the standard treatment consists of compression garments and specialised programs from well-trained, professional physiotherapists. This involves great cost to the people affected.
You may not even notice that someone is wearing a compression garment; these are stretch garments that you see people wearing on their arms and legs. The cost of these garments is extraordinarily high and is not covered by private health funds or public health programs. The need for specially made garments that provide more comfort and more protection imposes an even greater expense. Local hospitals often do not have compression garments available and off-the-shelf garments are not covered by private health insurance. We know from talking to people who are living with the illness that this is a major concern, as is the financial impost.
When we were involved in the 2006 community affairs committee inquiry into gynaecological cancer in Australia, we heard particularly heartbreaking evidence from women who came to share their experiences. I remember sitting on that committee with Senators Jeannie Ferris and Judith Adams, who knows the issues surrounding lymphoedema well. We met a Mrs White, who was an extremely effective advocate for the cause. She said that she had contracted lymphoedema in 1996. The cause was the removal of lymph nodes during cancer surgery. In the 10 years between the surgery and her speaking to us, she had been hospitalised on more than four occasions with cellulitis. The first time she contracted cellulitis, Mrs White had no idea what was happening. She could barely walk because of the increased swelling and the hardness she suffered in her legs. She described her condition to the committee and she said:
It is like elephantitis with your legs. If it is left untreated, you can end up with badly ulcerated legs. Your weight balloons.
The consequences for Mrs White's lifestyle were very profound, but all too common. She said:
Physically and mentally it is a big problem—and sexually with my husband. And I have had to curtail what I do. As I said to you before, I have always been an outdoor person and I have to choose what I can do. I cannot do it in the summer months, because in the summer months the blood drains out of the blood vessels more and that causes more swelling.
She finished her testimony to the committee with an appeal, and I will always remember this comment:
I would just like to see a lot more help out there for people. A lot of these things could possibly be avoided or, if they cannot be entirely avoided, it would make it a lot easier for them to be managed. And that is what it is all about, because you have to manage a lot yourself. It is not always possible, because a lot of people do not have a partner and so they do not have help with massage or bandaging at home.
We do need to carry things through and not just talk about them. We need deeds and not just words. The deeds that Mrs White talked about are carried out by lymphoedema support groups across the nation. I want to pay tribute to these women—and they are mainly women—and men who are there to provide peer support and who can be contacted at all times. They tell people that they understand their suffering and point out some of the things they have learnt from their own experiences.
In Queensland I spoke to Karin who was surprised by her diagnosis of lymphoedema after she had cervical cancer in 1993. Her story is similar to many with that condition. She was unable to find a specialist physiotherapist. It is most important that we acknowledge the work of specialist physiotherapists in this area because they can do great work to alleviate pain and help people who are genuinely suffering. Karin was able to find the Lymphoedema Association of Queensland on the internet. That was so important. Karin said something that I have heard many times from people who suffer from this condition—that is, she found her lymphoedema more frightening than her cancer. When you have someone who has been through the horrors of cancer saying the lymphoedema is more terrifying, that shows you just how important and how terrifying this condition is.
During this awareness month we need to talk about the issues of lymphoedema, we need to support the research happening in this country and, most importantly, we can show empathy and support for those people who are working through this condition every day of their lives. We as governments can work into the future to provide more support through physiotherapists and through compression garments, which are so important. I call upon everybody to be involved this month. Perhaps it is not a condition that gets the public attention it should do, but we can change that this month. If we can get involved with the tea parties, we can get people talking and take away some of the ignorance around the condition and we can show that we are effective in working together on the issues of lymphoedema in our community.