I am pleased to share this information-packed guest post by my new friend and amazing advocate from Australia, Helen Bonynge. Helen is sharing about her personal experience with lymphedema. I know you’ll appreciate Helen’s candor and the information she generously shares about her lymph node transfer a relatively new, some say controversial, option to help some patients (usually those who have exhausted all other measures), manage their lymphedema. Be sure to share your thoughts and questions, too, in the comments section. Thanks, Helen, for sharing some of your story!
Lymphedema, It’s Not Just a Bit of Swelling!
by Helen Bonynge
I am very excited to have been invited by Nancy to write a guest post on lymphedema, as March is Lymphedema Awareness Month. As stated by the Lymphatic Education and Research Network, up to 10 million Americans and 100 million people worldwide suffer from lymphedema.
There is still much ignorance, misdiagnoses and misunderstanding about this condition. In this post I will be writing about secondary lymphedema, but we should also acknowledge those born lacking important lymph nodes in parts of their bodies; this is known as primary lymphedema.
Even though so many people suffer from lymphedema, unless they have it themselves or know someone who does, few people understand or even know about it.
My journey with lymphedema started at the end of my treatment for uterine cancer 12 years ago. The removal of lymph nodes and follow up radiation destroyed part of my lymphatic system leading to swelling, discomfort, pain, lack of mobility and infections.
I remember seeing my surgeon before my radical hysterectomy and discussing my concern over the removal of the lymph nodes.
His response was, “It is better than being dead!”
Needless to say that was the end of that conversation.
During surgery I had 22 nodes removed in the groin area and I also later had 28 sessions of pelvic radiation.
Three litres of fluid a day are removed from the tissues via the lymphatic system and passed into the circulatory system.
The lymphatics are the “garbage disposal system” of the body, with the lymph nodes acting as a cleansing system, purifying, filtering and destroying bacteria and toxins. It is also the way that cancerous cells spread to other parts of the body.
The lymphatics are an important part of the immune system and removal of nodes also leaves one more vulnerable to infection in that area. Unlike the vascular system, the lymphatic system requires the movement of muscles to push the flow of lymph through the body, there is no heart pumping as in blood flow. We have between 600 and 700 lymph nodes in our body, but when crucial nodes are removed, (radiation and surgical scarring also destroy the surrounding lymphatic vessels) fluid will collect in the limb and cause lymphedema.
My lymphedema developed as soon as I finished treatment.
When my leg first started to swell, I was really scared.
It felt like a tree trunk – heavy, uncomfortable and unsightly. My normal clothes would not fit and I felt very self-conscious. Fortunately, a friend told me about a workshop that was being held at Westmead Hospital in Sydney, Australia. At the workshop I found out about a rehabilitation hospital, Mt Wilga in Hornsby, that specialised in treating lymphedema.
At this facility, I followed a program which involved five weeks of Complex Bandaging,Manual Lymph Drainage (MLD) and Laser. My leg was thickly bandaged – like having a plaster cast on. These were removed only to shower, which I did at the hospital. I drove each day from home for this treatment. At the end of five weeks my leg had reduced in size to just a little bigger than my good leg. I was then measured for a compression garment, from waist to ankle on the bad leg and to the knee on the good leg, a real passion killer!!
I felt miserable, but I carried on.
Over the years I spent a great deal of time walking in water which really helped the swelling, as it acts as a natural compression. Exercise is essential to help the lymphatics, as they need movement to function. In addition, elevating the leg whenever possible and raising the end of the bed proved helpful and eventually I was able to convert to just a compression stocking on the bad leg.
Importantly, whenever I fly, I wear compression tights to protect both legs from further damage. Though I have never done it myself, yoga is very good for helping to manage lymphedema.
Even though I was very careful to look after my leg as well as I could, I experienced infections repeatedly. These infections called cellulitus, caused by the lack of “cleansing” nodes, would come up in half an hour and require a trip straight to the hospital for intravenous antibiotics for ten days.
Needless to say this greatly impacted my work and home life, but we managed.
In 2010, one of these infections spread to my heart and I was diagnosed with pericarditis. Fluid was removed from around my heart and I had four weeks of strong antibiotics via a PICC line, as it is almost impossible to find a good vein in my arms due to previous treatment.
After that episode, I started to look for alternative treatments for the lymphedema.
I found out about Dr. Corrine Becker, who pioneered Lymph Node Transfers in Paris and I sent her an email to ask if any doctors in Australia did this surgery. It turned out she had trained many doctors in the US and elsewhere, but not in Australia.
I continued sending out emails to various lymphedema specialists.
One day a reply came inviting me to join a research program at Macquarie University Hospital in Sydney started by Prof. Boyages, who is a breast cancer specialist. He, along with other doctors, wanted to find more ways to help their breast cancer patients with arm lymphedema.
They realised this was not just about a “little bit of swelling”, but a life changing side effect of treatment affecting some patients mentally and physically, as well as becoming a financial burden for the rest of their lives.
In a few breast cancer cases, node transplant surgery is now being done as part of the reconstructive process, as the sooner new nodes are put into the arm the better the response. Nodes in this case are often taken from the groin and placed in the armpit. Other patients may have it done years after the onset of lymphedema and may also need some liposuction to remove stubborn fibrotic areas. There has been success in improving the arms of some of these patients and giving them a better quality of life. Surgery for lymphedema of the legs is more recent and takes longer to see results. In some cases two transfers are needed to groin and lower leg.
For a patient to be eligible for LNT to arm or leg they need to be assessed by a surgical lymphedema specialist. Their lymphatic system would be mapped to find suitable nodes to be harvested and the best position for placement to get maximum results.
On March 14, 2013 I had the first leg lymph node transfer in Australia.
Lymph nodes were taken from my neck and placed in my left knee. I created a blog about this, as I felt it needed to be documented. I called it My Lymph Node Transplant. It has now grown to include many articles, videos and stories that I feel will help people manage their lymphedema. It is also a great resource for those who are having lymph node transfers or other surgery world wide for lymphedema, as this is now becoming more common.
Today, one year later, my leg is doing well. The nodes are growing but it is a slow process. So far I have had no infections and this makes me very happy!
My hope, and the hope of many others working in this specialised field, is that as the knowledge grows and as the surgeons become more experienced, a lymph node transplant will become a more viable treatment option for more patients who are dealing with lymphedema.
Helen lives in Australia, but grew up in England. She is married and has two grown children. Helen works as a counselor in private practice. A large portion of Helen’s work has been, and continues to be, with cancer patients via the Cancer Council in Sydney, Australia. Be sure to check out her informative and supportive blog, My Lymph Node Transplant, where Helen not only shares more about her story, but shares the stories of others as well.
Do you have lymphedema or do you know someone who does?
If you’ve had surgery affecting lymph nodes, were you informed about LE risk?
What would you like to ask Helen?