Support for people with lymphoedema

18 September 2018 | Cancer Council NSW

Angela_Blog_2018-1Angela’s Story

My story is about lymphoedema, one of the side effects of cancer treatment… It can happen to anyone and it often happens when you are picking up the pieces and dealing with the aftermath of cancer. There’s approximately 22,000 people living in NSW right now with lymphoedema.

Many people think that the end of cancer treatment means the cancer struggle is over, but that is not always the case. Lymphoedema is an unwelcome side effect of cancer surgery and/or radiation treatment.

I was upset when I was diagnosed with lymphoedema. Upset with the knowledge that I now have a chronic illness to manage. It’s not something that is temporary or can be cured but something that I will have to manage for the rest of my life.

It all just felt so unfair.

Lymphoedema is a chronic, progressive illness. There is currently no cure for lymphoedema and the physical, emotional and financial impacts are significant. Emotionally there is the impact of having a lifelong condition that requires daily management and it is a constant reminder of my cancer treatment. Having to choose clothes that fit the affected limb and having to wear my compression garment constantly can also have a negative psychological impact.

For me the physical symptoms are swelling of the affected area, heaviness of limb, aches and pains. I always feel very self-conscious about my swollen arm, especially over the past 6 months as I have not been able to have lymphoedema treatment because I have needed more chemotherapy. This has caused my arm to increase significantly in size and it is very noticeable.

You can also be affected by fibrosis which is hard painful lumps in the affected area or serious infections like cellulitis that can require hospitalisation.

Lymphoedema can happen any time, even years after cancer treatment.

At age 14, I had surgery and radiation to my lymph nodes to treat Hodgkin’s Lymphoma. After being diagnosed with breast cancer in 2015 I had bilateral mastectomies and axillary node clearance, and then radiation to the same area as I’d had as a teenager.  A few months after all my breast cancer treatment, I was diagnosed with lymphoedema.

In light of all of the treatment to my lymph nodes I should have almost expected lymphoedema but I was really unaware of the risk and impacts before I was diagnosed.

Angela_Blog_2018-2No one really raised it as a potential issue.

A few days after my breast cancer surgery a physio came into the hospital ward and gave me a handout about lymphoedema but to be honest I wasn’t in a good space physically or mentally to take in this information. No one ever mentioned lymphoedema to me again until I was diagnosed during a routine check-up with my oncologist who noticed swelling in my left arm.

I was referred to the public lymphoedema clinic. Whilst the staff were lovely and tried to help, the clinic was only staffed part time, and there was no reception. They weren’t able to provide the effective, ongoing treatment that I needed for my lymphoedema so I decided that this was something that I had to do for myself.

In 2015 I started seeing a private lymphoedema therapist. The therapist advised that I should come once a week. It cost $120 each visit and  I couldn’t afford it, so I went fortnightly.  After a few visits, and feeling the financial strain, I negotiated with the therapist to get the cost down to $100 per fortnightly visit.

I had 18 private appointments in 2016 alone and no public appointments during this time.  My total cost of lymphedema treatment for 2015-2017 is now $4120.

I was shocked when I added up the cost and saw how much I had spent on treatment over the past few years. This was at a time that I wasn’t working and had limited income. It was very difficult to have that greater financial pressure when I most needed to reduce stress in my life.

I am now on a wait list for active treatment at my public lymphoedema clinic but they are unable to tell me how long this wait will be due to the number of people already on the list and the seriousness of the current patients’ ongoing treatment needs.

So what can we do about it?

What we need is to support people with lymphoedema so that they have access to public lymphoedema services when and where they need them anywhere in NSW.

Specifically, we can join Cancer Council in calling on the next NSW Government to fund more public lymphoedema services across NSW. I’ve signed the Saving Life 2019 petition and I urge everyone else to do likewise, to help ensure people living with lymphoedema can access the support that they need

Sign the Saving Life 2019 pre-election campaign petition now.