Author: Gaynor Leech Founder of L-W-O
It is no secret that since my diagnosis of lymphoedema as a direct result of radiotherapy treatment for breast cancer, has led to my journey of patient/lymphoedema advocate to raise awareness of this condition. Receiving a diagnosis of cancer is terrifying and takes you to a very dark place. Luckily in my case my prognosis was good from the start however, no one told me that lurking in the background was another condition that would be part of my life forever.
What is Lymphoedema?
The official definition of Lymphoedema is that it is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs. For the patient it is a huge lifestyle change of daily routines skincare, wearing of compression, weight control and exercise to keep your condition under control. You live with swelling, inflammation, pain, constant tiredness, body image problems, mental health problems and in some cases isolation. The impact on your life should not be underestimated.
Initially in my case I had the support of the Lymphoedema Clinic at our local Hospice in Nuneaton, however eventually I was discharged as deemed to be able to look after myself. Everyday health wise is a struggle and a challenge.
Raising Awareness
Not being informed that from my cancer treatment I would develop another illness caused more anger than the illness itself. I needed to understand my diagnosis of lymphoedema and how I could best look after myself. This led to two years of research, lots of reading, asking questions and eventually publishing my own website that led to me setting up various social media groups to support people like me who live with lymphoedema. When I set out, I had no direction, no computer skills, just a burning desire to make sure nobody else would feel as helpless as I did.
Networking
From the beginning I had lots of support from my local Macmillan Manager Julie Hunt at George Eliot Hospital and she introduced me to many people who then introduced me to others. Networking was completely new to me, but it has led to my group becoming part of the larger community of lymphoedema. Most of the events and meetings I am invited to are cancer related. In the early day’s courses like “Living Well Beyond Cancer” where just getting started offering support after active treatment had finished. The support gives a safe place to talk about your feelings, to help with financial problems and discussing side effects of treatment. For six years at each meeting I attended I asked the question “Why isn’t lymphoedema being included as a side-effect”? Or “Why aren’t you including lymphoedema in your courses?” Initially there was very little response, then I got to a stage where I would get an answer of “Maybe in the future”.
Living Well Beyond Cancer
Thankfully, the future arrived this year when I was invited to “Living Well Beyond Cancer” at UHCW (University Hospital Coventry & Warwickshire). The event was very well organised by Julie Bliss from Macmillan Cancer and involved both patients’ organisations like L-W-O, members of the public, oncology, radiotherapy, physios and other staff from UHCW. Like most events I attend with our information stand I learnt new things. For me personally it was a successful event.
Having said that I was horrified when the side effects of radiotherapy treatment were listed after radiotherapy treatment into short term and long-term side effects, I waited patiently for my eureka moment. Sadly, it never came Lymphoedema was not listed as a side effect. Over the next few hours Twitter lit up as we discussed why this information on lymphoedema was omitted, lots of question, no real answers.
The following day I decided to have a look at the Royal College of Radiologists website but couldn’t find any references that would be useful. Therefore, I decided to email them, they came back with an acknowledgement and said they would look at my enquiry.
I explained that I had asked the following at the well-being event in the Q & A’s
- Why wasn't lymphoedema mentioned as a side-effect? Sadly, there was no clear answer.
- Do you warn people that this is a possibility? Answer, that would be up to oncology.
I stated that, this clearly is not good enough and this opened up discussion on social media. In this email today I am asking, does the Royal College give guidelines for radiologists re lymphoedema? If not, why not? Will the Royal College address this issue in their training materials? (This is an abridged version of my email to RCR).
Royal College of Radiologists
I was contacted by the Professional Services department who not only acknowledged my email but said they would look at my enquiry. They sent a detailed reply a few days later for which I am truly grateful. The relevant points:
It is critical that the professional consenting the patient for breast radiotherapy discuss the possibility of lymphoedema such that the patient can make an informed decision about their treatment. This professional will usually be either an oncologist or a therapy radiographer.
The Royal College of Radiologists (RCR) training curriculum for Clinical Oncology is clear in its requirements for all trainees to know about the recognised late effects of radiotherapy for all tumour sites and most definitely includes lymphoedema. Moving forward, your email is actually quite timely as the RCR is currently in preliminary talks with expert groups to develop national consent forms for radiotherapy across the country. For breast radiotherapy, this ensures all patients are appropriately counselled regarding the risk of lymphoedema before they make their decision with respect to treatment. The RCR are aware that locally developed consent forms already address the possibility of lymphoedema as a side effect of breast radiotherapy, but national forms will help to ensure this is the standard practice across the UK.
I hope this is reassuring to you and answers your query. Please do feel free to be in touch with us in the future as we very much value the opinion of stakeholders such as yourself as we shape strategy and training.
I realise this is related to breast lymphoedema this is due to the fact I included a brief history of how I came to have lymphoedema. Presently I am sending out emails to other organisations to see how we can change to ensure every cancer patient is warned about the possibility of lymphoedema before treatment commences. I do know that cancer patients' warnings on lymphoedema is still patchy from the conversations I have had this year both in the community and online.
