Case study: funding for lymphoedema treatment
Jeannette from Lancashire underwent treatment for breast cancer in 2022/2023, but was left suffering with lymphoedema1 – a painful swelling caused by a build-up of fluid in the body’s tissues. The Orange Foundation funded Manual Lymphatic Drainage (MLD) sessions for Jeannette.
How did you find out about The Orange Foundation?
It was through Cancer Help at Vine House in Preston, where I volunteer. And it was Jeanette Smalley who made me aware of The Orange Foundation and Michael, and the funding support available.
What has been your experience with cancer?
I had triple negative breast cancer and a lumpectomy in 2022, finishing all my treatment in 2023. In October that year, I started getting a lot of swelling and pain in my breast. The breast nurses advised me to massage it, but despite doing this constantly, the pain only got worse. By January, I was really ill – the pain had spread down my side into my ribs, and I was struggling to breathe. I contacted the nurses again, asked to see someone urgently, and even went to A&E because it was so bad. I took antibiotics in case it was an infection, then saw my original breast consultant surgeon, who didn’t think it was lymphoedema since I’d only had one lymph node removed, but she did refer me to the lymphoedema clinic at St Catherine’s.
At the clinic, the first pressure reading that they did on my breast was 69-71; anything measuring over 50 is considered lymphoedema.
I’ve never even heard of lymphoedema in the breast – I had always thought it was it a condition of the arms and legs.
What was the treatment for lymphoedema like?
I started off with four lots of treatment over a two week period. Manual Lymphatic Drainage (MLD) is a specialised type of gentle massage therapy, used for lymphoedema treatment, and is designed to help stimulate the flow of lymph fluid around the body.
They target as much as they can within those two weeks, and then I went back after 12 weeks, as it takes around that long to see the results. There wasn’t really a huge difference after this first initial treatment, and I had another round. Funded lymphoedema treatment finishes at St Catherine’s once you’re able to self-maintain the MLD, through your own massage so St Catherine’s signposted me to MLD UK, to book sessions with a practitioner privately.
MLD therapists are scarce in number, and purchasing the required machine myself would cost £4,000. No funding is available from the NHS , with minimal funding universally for lymphoedema and limited knowledge within the medical profession.
This is a lifelong condition – treatable, but not curable – and I feel there should be more treatment options out there for people with lymphoedema – some people are having to wait 12 months for appointment to see a lymphoedema clinician.
How did your cancer diagnosis affect you personally?
At the time, my diagnosis didn’t really affect me. I just thought, right, that’s it, I’ve got to get on with it. But now, it’s different. I question everything. Ever since my radiotherapy, I’ve never really felt right. I’m tired all the time, and I have to have bone infusions. It’s like the cancer journey doesn’t really end; it changes you.
Losing my hair was horrendous, but I told myself I’d rather lose that than my life. It’s the long-term damage that’s hard – what it does to your body afterwards. Sometimes I get a bit down, but I remind myself there are others worse off.
I live on my own, so I have to keep going. I don’t have the option to just stop. I still get pain in my arm and worry sometimes that it’s coming back. But I keep moving forward because I have to.
My cancer was found by chance during a routine mammogram. I never felt a lump, and the doctors said if I’d gone even a month later, they might not have caught it. It turned out to be triple negative breast cancer.
How has the MLD therapy – funded by The Orange Foundation – made a difference to you?
A Ormskirk-based lymphatic drainage specialist named Barbara McCaffrey was recommended via MLD UK. I need to have this treatment regularly, to prevent the lymphoedema worsening and leading to cellulitis, which I’ve had that twice previously.
MLD makes a huge difference to me. Within 15-30 minutes, I can physically feel the release. The pain is gone because the fluid has moved on, and I feel so much better. It takes maybe about four or five days before I start to see the swelling again. The MLD is essential to me and my quality of life. I’m grateful to The Orange Foundation for funding my treatment and helping me continue this essential care.
1Lymphoedema is a long-term condition that causes swelling in the body’s tissues, often in the arms or legs, but it can affect other areas too. It happens when the lymphatic system – which helps remove waste and excess fluid – becomes damaged or blocked, often as a result of cancer treatment such as surgery, chemotherapy or radiotherapy. This can lead to a build-up of fluid, causing discomfort, heaviness, and swelling.
For more information on lymphoedema, visit The Lymphoedema Support Network
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