Working and living in the world of cancer as I do, can be very tough at times. But as time goes on and my work becomes more established, it is a pleasure to be able to help so many people. With the rapid expansion of the Internet it means that it is very easy to communicate around the world and I am grateful to Helen for getting in touch from Australia! She is facing some tremendous difficulties since having her treatment, and was finding it hard to find people facing similar challenges to communicate with. I am delighted to share Helen’s incredible story and I know she would be thrilled to hear from you!
“Fourteen years ago I was successfully treated for Uterine Cancer, grade 3. I had a radical hysterectomy, followed by 28 sessions of radiation. 
Appointments for the next ten years followed, during that time there was no sign of cancer. Mine was a success story except for the Lymphoedema that started, in my left leg, immediately after treatment ended. This was as a result of removing 22 lymph nodes, in the groin area, followed by radiation. I have written extensively about my journey with lymphoedema in my blog, “My Lymph Node Transplant“. I thought that Lymphoedema was a bad enough side effect of cancer treatment but nothing prepared me for what was to follow.
In 2010 I started to experience some Peripheral Neuropathy in my left foot. I blamed this on the Lymphoedema, maybe due to the compression garments or swelling. In addition I started to notice a slight weakness in my legs going upstairs. In 2012 I went to the doctor as I was starting to have problems in both legs. I had blood tests and an examination but this showed no particular problem. Over the next few months I started to have a few falls, my toes would catch on uneven ground, fortunately there were no bad injuries just embarrassment!! By 2013 things were getting very difficult, I decided that I needed to see a neurologist. My first neurological tests were in December 2013, I was still able to walk unaided but lifting my feet was the main problem, at this stage I did not experience pain, but had a pins and needles sensation. The neurologist confirmed that there was definitely a problem and that it could be Radiation Induced Lumbar Plexopathy. This was the first time I had ever heard of RILP, damage caused to the nerves and small blood vessels in the pelvis from the radiation during my cancer treatment. However he explained that this was very rare, only 0.16% per 1000 patients and that he wanted to do more tests, to eliminate any other causes. An immunologist, another neurologist and a respiratory doctor saw me. I had CT scans, MRIs, a biopsy, blood tests, x-rays, ultrasounds and nerve conduction tests. After a year of testing, during which time my condition deteriorated, my neurologist said it was definitely RILP and that there was no treatment. He suggested I do rehabilitation but otherwise there was no treatment. He also had no idea how far it would progress, I was already using two walking sticks and things were terribly difficult. I was devastated, it was as if I had hit a wall where no one could treat me or explain why this was happening.
The first three months of 2015 were spent in a rehabilitation hospital taking part in their intensive Neurological Program; it was during this time I became paralyzed and experienced nerve pain, even my rehab doctor had not seen this before.
She had treated women with Brachial Plexopathy after radiation for Breast Cancer but not Lumbar Plexopathy. During my time in hospital I learnt to use a wheelchair, I developed my upper body; I worked with physiotherapists and occupational therapists to prepare me for “Life in a Wheelchair” (blog)
This was a terrible time, we had to sell our house and find a new home suitable for a wheelchair. There were many tears of sadness, frustration and anger at my situation. It soon became apparent to me that I did not fit in any “box” medically, I was not a spinal injury, did not have MS or Diabetes or anything that people understood. I was in no mans land medically, grateful that the cancer had not returned but devastated by this late stage side effect of Radiation. I believe that as cancer treatments become more successful we will see more late stage side effects. The cancer community needs to embrace these patients and give them the support and understanding they need. Doctors should be more aware of the possibility that these and other side effects could occur. Their job is not finished at the end of treatment. These effects can happen from 1-30 years later so we need to be aware of the possibility and seek help as soon as possible. Maybe someone reading this will recognize their own symptoms in my narrative.
I would like to thank Chris for allowing me to share my story. I have recently reconnected with my Radiation Oncologist who has agreed to give support and to also learn from my experience. He said that he knew this was a possibility but he had not actually seen it. Through my blog I hope to build awareness and understanding. I encourage others to share their experiences. No one should have to deal with this alone…..” Helen
This site is all about sharing and learning from experiences and I would like to thank Helen for sharing her very powerful story. If you would like to get in touch with Helen she is on Facebook and Twitter, and if you would like to share anything about your own personal cancer experience, please feel free to get in touch!
Thank you so much Chris for sharing my story.. The internet and social media make the world a smaller place … Thank you … The work you do is invaluable …
Thx a lot Helen! There is so much that is not really understood about cancer. Life after treatment can be more difficult than living with the disease. If more of us are going to be affected by it then we will need to learn better how to help people, for the good of society. Like you I am doing my best to help people understand issues like ours. Great to reach out to Australia too, as our problems are common, wherever we live!
Helen, I am so sorry this has happened to you. What a struggle you have had.
Your story actually terrifies me. I too had uterine cancer…13 years ago with exactly the treatment you describe. I developed lymphedema a little less than a year later, though I diagnosed it myself after not one doc could identify it. I have also developed a problem with my immune system that has resulted in having to have monthly infusions at the hospital. Now I am diabetic …the only one in the family.
Like you I have tingling, numbness growing in my feet. I have tried to keep going but it is difficult. I am praying I am not going down the same road you have had to endure.
I had a lymph node transplant in Nov this year. I don’t know if I will see an improvement or not, but I hold hope.
I am not at all sure I understand exactly what RILP is. I have tried to look it up, but it was written in medical jargon difficult to put together.
I thank you for your posting. It does help to know I’m not alone.
Hi Jan. Your story is very similar to Helen’s and I am pleased that you were able to find us and also share your own experience. I’m sorry to hear of your issues and I do hope that things improve for you.
You are right, it is very important to know that you are not alone, which is why this site exists, so that we can share our experiences and try and make sense of things together.
Very best to you, Chris
Hi Jan I am sorry to hear that you are having similar issues to me but i truly hope it does not progress as mine has done . I have connected with about six others and only one was like me plus she had other health issues too.. It seems that the level if disability is different for everyone. Basically RILP is the damage caused by the radiation to the lumbar plexus group if nerves in the pelvis… The tiny blood vessels are damaged and over time this leads to the nerves dying or having a kevel if damage .. It would gave helped to know this could happen then at least when the symptoms started there could be hope for some early intervention.. There is some articles on the use of wafarin to improve blood supply to the nerves but no formal studies… The use if ixygen therapy has proved unhelpful … If you would like to contact me my email is helenbrd@bigpond.net.au if I can be of help… Take care Helen
This is a link Jan to a more understandable article on RILP. But they are hard to find!!!
http://www.isno.nl/neuromuscular_info/disorders_and_diagnostics/disorders/items/lumbosacral_plexus_neuropathies/default.aspx
I am fighting hard here for recognition of my condition and the care I need. I am not excepted by the Spinal outreach service even though my needs are the same. My radiation oncologist is now doing his best after I was reduced to tears in his office. at last he understood that i should not have to fight all the time for care and that they need to embrace my condition as their responsibility… I am now at last connected to an OT and a physio and a new Rehab Dr 8 months after being paralysed!! I grew up in England and still love the soccer!!!
It is wrong that we need to fight for things when we are least able, Helen, but I’m pleased to hear things are improving for you. Since you very kindly shared this piece there has been a lot of interest in your story, and I hope we have managed to connect you up with more people. Who do you follow in English soccer? 🙂
Yes Helen, it’s a pretty lonely existence, isn’t it? I’ve only recently been diagnosed with RILP, and I would seem to be a very, very late presenter – radiotherapy for testicular cancer in 1976, with only slight inidcations of a problem until really quite recently. So I thought maybe some researcher somewhere might might interested to know. Perhaps at the Royal Marsden, where I was treated all those years ago. Well, if there is such a researcher, I’ve yet to find them. Mind you, getting even a reply from the Marsden would be a start….
And meanwhile, my neurologists and my neuro-physiotherapist have discharged me back to my GP – through whom I got a referral to an Ocupational Therapist, whose advice included such nuggets as “If you can’t get things out of low cupboards, don’t keep things in them.” Ok, we’re not really on our own with this condition, but it sure feels like it sometimes.
Hi Neil
I had hoped to connect with others and bring a few if us together as it is a very lonly road with so little support.. Like you my neurologist washed his hands of me and just sent me to rehab… It is a pity that no one us interested in looking into this as I think it is more common than we think… But it does not get reported… I made contact with my radiation oncologist myself … I have to say he is supportive … He has had women with Bracial plexopathy post breast cancer treatment … He said they changed how they do the radiation to avoid this … How ever he had not seen lumbar Plexopathy…mthere is a Dr in France who ihas done a trial ysing a mix of drugs … I am waiting to hear back re results etc… Happy for you to contact me helenbrd@bigpond.net.au if it helps at all… I grew up in England so have heard of the Royal Marsden Hospital .. Take care Helen ..
Neil just letting you know that I replied to your email but it came back after 5 days they said
Most likely there is a network problem that prevented delivery, but
it is also possible that the computer is turned off, or does not
have a mail system running right now
Have resent the email plus another about creating a group for RILP so I hope you get those or see this …Helen