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Lymphedema, It’s Not Just a Bit of Swelling! A Guest Post by Helen Bonynge

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.

image from RightHealth.com

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.

Lymphedema, it's not just a little bit of swelling

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.

About Helen

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.

Helen

Lymphedema, it's not just a bit of swelling!
Helen’s bandaging kit for complex bandaging when first diagnosed with LE.

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?

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25 thoughts on “Lymphedema, It’s Not Just a Bit of Swelling! A Guest Post by Helen Bonynge

  1. Thanks Nancy for giving me the opportunity to write this guest post. I look forward comments and questions.. Helen

    1. Helen, Thank YOU for writing it. Your willingness to share here and via your own blog is helping others feel less alone and realize they may have other options.

  2. Great post Helen…very personal and informative. I am learning a lot! Can only imagine in years to come how treatments will continue to evolve and hopefully there will be something to help Lucia.

    1. Thanks Jo-Ann even in the year since I have had my surgery I have seen progress and improvements in the LNT surgeries being done.. Time and experience can only help the future of those with Lymphedema.. Helen

  3. Thank you Helen: I have lymphedema, and I’m a physician, and I trained as a certified lymphedema therapist. I have watched the lymphedema surgeries start to “take off”–the lymph node transfer and the lymphovenous anastomosis and I watch the medical literature, and there have been NO randomized, prospective studies. Just recently, there was a review published, of articles, and the surgery was declared safe and effective, and a second, very small retrospective study, again the authors felt they could make a definitive declaration. I had spoken to one of the pioneers of the anastomosis surgery, and he honestly told me it tended not to cure and there was no long term follow up. Those of us with lymphedema are desperate for a “cure”, and surgeons can do any surgery, and as long as it’s declared not experimental, insurance might pay for it. But, the literature doesn’t support the long term safety and effectiveness of the surgery. And Dr. Becker is notorious for not publishing her data. Those of us who founded the stepupspeakout.org site have heard from women who have not had good outcomes from the surgery–and have been sort of abandoned by the surgeons. I think you’re very brave, as if there is going to be a benefit from this surgery, we’ll find out about it through you.
    Unfortunately, there never used to be a way to make a profit off of lymphedema, so it was ignored–and still is. Now, the surgeons can make money with these surgeries, so they’re “exploding”, but without careful studies to prove it’s effective.
    I wish you the best, and thank you for sharing.

    1. Hi Kiri.. Yes this is new surgery, yes there are pros and cons to it but I see it as hope for the future that can only improve with time as surgeons become more experienced and research is collected, which is happening now, but results take time. I am in contact with many people and some allow me to share there stories in my blog. I have had one contact where the transferred nodes had to be removed due to infection. I think at this stage people must not view this as a cure but as improving their Lymphoedema… Just to have no infections is a huge plus and the limb not getting worse as the day progresses gives hope that in the next few years it will get even better. Not everyone is suited to this surgery and in Sydney they are very strict in their choice of candidates. A limb that is to fibrous is recommended for liposuction instead. I will continue to write my blog and update as I get news of people’s progress.. Anyone thinking of this surgery must really check out their surgeon, experience, pre and post care programs, pre surgery tests and if possible being part of a research program so that results are collected… Only time will tell if this is the way of the future, money drives any research and if this is what it takes for people to take notice of Lymphoedema then so be it!!! Helen

    2. I have had secondary lymphedema for 15 years, following uterine cancer and radiation. I had a LNT a year and a half ago and honestly have seen no change in my leg whatsoever. I swim and walk and manage a good weight, so I’m doing everything I should, but still no change in “Big Bertha.” I have to say that I have felt abandoned by my surgeon as there has been absolutely no effort on her part to follow up with me to discover if the surgery was successful or not. My only follow up appointment was one that I initiated. I asked then for a repeat scan to see if the nodes were being to function in their newly transplanted location. She said that the scan simply won’t show if the nodes have been transferred. I’m wondering if I should see a different doctor. I had the transfer in Nov of 2015.

      1. Jan, I am sorry you feel abandoned by your surgeon. That is horrible and completely unacceptable. I would say, yes, see another doctor. My best to you and thank you for sharing.

  4. Thanks for sharing! I have it in my arm even without any lymph node removal. My chemo was so strong it turned some of my nodes to mush. Usually it is me saying, it’s better than being dead. But it’s no fun, that’s for sure. Kind of used to it now, but it’s not going away. They said maybe within a year, but it’s been longer.

    My oncologist also said “a bit of swelling”. I didn’t know what was really going on till a went to a lymphedema clinic. They were shocked.

    He’s always saying “it’s not bad” – but he doesn’t get how hard I work to keep it under control.

    1. Just wanted to share our website which was created by a few of us with breast cancer lymphedema–none of us had more than 3 nodes out–http://www.stepup-speakout.org/

      It’s not just swelling: it’s a systemic disease, and if untreated, will lead to irreversible changes in the skin and underlying tissues.

      It takes a lot of work to keep it in control–and I have yet to find a member of my treatment team who “owns” it.

      Taxane chemo is a risk for lymphedema.

    2. Yes it is so very hard to keep it under control…. It is a 24/7 care program that no one appreciates unless they to have Lymphedema. Keep it up though because it will make such a difference to it not getting worse over the years… I understand your frustration.. Helen

  5. So good to see you Nancy’s blog, Helen. I sounds like you’ve been through so much with this – far more than little bit of swelling, indeed. Reading your post I can’t help but wonder when they’ll find better ways to treat and heal, ways that don’t have so much collateral damage.

    Be well, Helen,
    Catherine

    1. Thanks Catherine … We can only hope that things will improve in time. I think that to build awareness of Lymphoedema and to let people really understand what it involves is a step closer to more being done to avoid it and to find more help than we have now.. Take care Helen

  6. Thanks so much for this information. I have Lymphoedema and I’m watching the results of the Lymph node transfers data carefully. One day it may be in my future.

    Thanks to you Nancy too!

    1. Thanks… In years to come with more experience we may see this as the future for those with Lymphedema… It is exciting progress. Helen

    1. Thanks Marie, it was because I could not find the info I needed that my blog was born, with a push from my daughter!!!

  7. Thanks Marie!! I appreciate everything you offered here about life with LE. I put this on my Facebook page in the hopes that some of my friends will take the time to read it!! My life was turned upside down with the lower extremity lymph after I finally got a diagnose after 6 months of doctors, wound clinic, etc.in 2008 I can say that at this time I am dealing with it much better. I just received a brand new set of Solaris garments (4 pieces for foot, calf, thigh, and knee). What do I miss doing besides just walking and climbing stairs in general? Playing tennis and hiking in the woods!! On top of the lymph I also am dealing with obesity, but the good news there is that I have lost 100 lbs since 2011!! I still have a ways to go, but life looks much brighter and healthier now!! God Bless You! Myra

    1. Thanks Myra I am so glad you found it helpful and shared on Facebook.. Best way for people to understand what it means to have Lymphedema.. I have a set of the Solaris wraps .. I find them very good … Especially if leg is playing up!!! Keep up your healthy life style this will help your Lymphedema too … Helen

  8. Thank you so much for this guest post, Nancy. I have heard of lymph node transfer and didn’t know it is done in Australia. I know there is a prominent plastic surgeon in LA who does it and says it’s been very successful. As a lymphedema advocate, I am very pleased whenever I see a post about this condition, so often overlooked in a society where, ironically, looks are so important. Keep up the great work, and kudos to Helen for writing her story. XOX

  9. Helen, what a great, informative post! I had never heard of lymph node transfer, but it sounds promising. I’m hoping your transplanted nodes continue to thrive and that it helps you immensely!

    Nobody told me about lymphedema. I went into my first lumpectomy and axillary node dissection just being told that after surgery I couldn’t have needles and blood pressure on that arm. I had no idea why.

    Thank you for your educational post!

    1. I am so glad it was of help to you… Yes there really needs to be an increase in educating people about Lymphedema after nodes have been removed.. I was given a little book mark as i left hospital with some info on!!!

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