CONTACT

Information following Radiotherapy treatment for Dupuytren’s and Ledderhose disease


Dupuytren Patient Experience

This blog post gives guidelines as to what to expect in the coming weeks now that your radiotherapy treatment is complete, and advice as to what to do and what to avoid with your hands and feet.

What side-effects should I expect in the weeks after radiotherapy treatment?

Radiotherapy treatment may cause mild redness, soreness and dryness of the skin in the targeted area. This tends to start about 2-3 weeks after each phase (week) of treatment. Rarely, the skin may crack, weep or swell up. In the majority of cases, these side-effects get better after several weeks, but in about 10% – 15% of people, mild dryness, cracked skin, thinning or hard skin may persist long-term. A simple cream such as E45 or aqueous cream can reinvigorate the skin and improve dryness in the treated area. Some people also find that creams containing urea can be particularly helpful.

Occasionally patients notice a flare of the pain associated with the nodules, especially in the feet. This is normal and tends to get better over a few weeks. If new nodules grow, especially if they are outside of the treated area, then please let Dr Shaffer know, as he may need to redo the markup of your hand to include these areas in the radiation field.

If you are worried about side-effects, particularly if they are more severe or if they are different from what you expect from the information above then please contact Dr Shaffer to discuss it.

What should I avoid doing with my hands or feet?

Most people can carry on with their normal activities. For instance, you can continue to drive, play golf, type and do the washing up. You can also walk normally, and if it is not hurting then you could also continue to jog or run.

However, you should avoid extreme stresses to your hands for four weeks after each phase of treatment. For instance:

  • Lifting very heavy weights in the gym or lifting building materials.
  • Friction to your hands, for instance, having ropes slide through your hands while sailing or rock climbing
  • Extreme heat or cold, as they may also stress the skin on the hands.
  • Chemicals e.g. alcohol rubs, other irritant chemicals

Follow-up

Dr Shaffer will send you a questionnaire at three months after the end of treatment. If all is going well then you will not require another follow-up. If there are any questions, then generally they can be covered by email, but Dr Shaffer would be happy to talk to you on the phone, or even see you in clinic if necessary. The vast majority of people do not require a face to face follow-up appointment.

What do I do if the disease gets worse?

  • If you develop disease on the hand or foot that has not received treatment

I can safely treat this with radiotherapy as it has not been treated before, in order to stop it getting worse and to stop the disease causing pain and/or contracture.

  • If you develop disease on the hand or foot that has previously received treatment:

If it is in an area of the hand/foot that has not been treated: I will consider treating the new area with radiotherapy. Please contact me to arrange an appointment to consider this.

  • If it is in an area of the hand/foot that has previously been treated with radiotherapy:

Dr Shaffer will consider re-treating the area if:

  1. You didn’t have a very bad skin reaction to the radiotherapy the first time round
  2. It is at least 1 year since the original treatment
  • If you form a contracture (fixed bending) of your fingers:

You should see a hand surgeon to consider release. Dr Shaffer can give you the names of excellent surgeons he works with who can provide full access to all forms of treatment.

Where can I find more information and get support?

There are many sources of support for patients with Dupuytren’s and Ledderhose disease. We would particularly recommend joining the following two Facebook groups:

In the UK – British Dupuytren’s Society

International – Dupuytren’s Disease Support Group