Carolyn wrote about her recent experience of having radiotherapy to treat Ledderhose Disease at our centre in Southampton. Read her story here:
When Carolyn from Bristol offered to write about her recent experience of having radiotherapy to treat Ledderhose Disease, we were very grateful for her contribution. We hope other sufferers will find her story useful:
I’m Carolyn, I’m 51, and I live and work in Bristol.
I have suffered from Dupuytren’s Disease on my left hand for a number of years, but after completing a half marathon power walk for charity some years ago, I noticed I had developed several small lumps on the soft tissue in the middle of the soles of both feet. I went to see a consultant at the hospital and was informed that this was Ledderhose Disease and was advised to use some insoles in my shoes and trainers until the lumps became unmanageable, whereupon I could have an operation to cut them out.
Time went on, and I continued to power walk, and the lumps started to get larger and harder on both feet. I can only liken it to having small marbles in your shoes – all my shoes and even my trainers started to become uncomfortable to wear. Working out was painful and made my feet burn on the soles. I was reduced to putting memory foam insoles into flat shoes to get any kind of
In late 2014, I decided to search out what options I had available to me – NHS could only offer injections or surgery – I had read that injections were almost useless and very painful – surgery was not an option due to recovery time and repeated surgery required. I did a search on the internet and found this website, where I read about a fellow sufferer of Ledderhose Disease and the radiotherapy treatment they received. I was so pleased that I found the site, and after a discussion with my husband, I decided to contact them to get an appointment to see Dr Shaffer.
I met Dr Shaffer in Guildford in November 2014. He took a look at my “bad” hand first and then at both my feet – Dr Shaffer was able to confirm I had Ledderhose Disease and that radiotherapy would be the right treatment for me – I was quite emotional but also so relieved that I had another option for treatment and decided to go ahead. Dr Shaffer explained the treatment process and then outlined the areas on both feet where treatment would be required. While it was disappointing that this treatment was not available on the NHS, I felt that the improvement in my quality of life was worth the expenditure. I was sent down to the Cancer Partners UK radiotherapy centre within the Guildford hospital to have the outline Dr Shaffer had made into a shield for each foot.
In January 2015, I had my first five sessions of radiotherapy at the Cancer Partners UK centre in Southampton. The night before the first treatment I was a little worried at what it would be like but when I got to the centre any fears or negative thoughts slipped away as all the staff were so welcoming and supportive. The radiotherapists set me up using the shields that had been made for me and the actual treatment only took 30 seconds per foot! I felt nothing while the treatment was being administered and was comfortably lying on the treatment couch. Before I knew it, the first treatment was over. By the evening, I was a little sore and swollen from the radiation but nothing too uncomfortable, and that seemed to disappear overnight. I had another four days of treatment, and each evening, I was sore on both feet.
Once home I had a little swelling and surface dryness – I had been informed that this was normal and had been issued an enormous pot of E45 to use to counteract the dryness. Over the next few days, the swelling disappeared, and any dryness too.
I had a break of eight weeks and did not notice much change in the size of my lumps. I returned to Southampton for a further five days of treatment in March 2015. During these five days, I did have increased sensitivity after treatment each day and was a little swollen after each treatment. The last day of treatment was quite emotional for me as I had to say thank you and goodbye to all the wonderful people at the radiotherapy centre in Southampton who had been so supportive to me.
It’s now one month after the second round of treatment sessions, and my “marbles” are definitely smaller – my left foot is the better of the two. I am still wearing memory foam insoles in my shoes and trainers as most shoes are still a little uncomfortable (I have almost resigned myself to the fact that “heels” will never be an option for me again), but I have been able to get back to power walking which is just fantastic. At the beginning of the year, I could hardly stand for a half-hour without pain, and now I’m power walking five miles three times a week!
I am now awaiting my six-month consultation with Dr Shaffer.
*Please note that results may vary for different people.
