WORLD WIDE DUPUYTREN'S CONTRACTURE SUPPORT
Available 24/7
HOW TO FIND AN RO NEAR YOU TO TREAT YOUR DISEASE
Be Diligent and keep calling
HOW TO CALL AND FIND A RADIATION ONCOLOGIST TO TREAT ME
• Locate the Oncology Department at your local Hospital or an area you feel comfortable traveling to.
• Locate all off-site Oncology Departments (sometimes called a Cancer Center)
When you call these offices you may want to ask:
• Do they treat “benign” diseases. If they do not, understand there are many very sick people requiring treatment and it is as much as the center can probably handle.
If the receptionist doesn't know or seems to not understand ask to speak to the chief/lead Radiation Oncologist's nurse/assistant and ask if they will speak to the Lead/Chief RO and ask.
• If they say YES, then ask if they will speak to the Chief/Lead RO and ask if they will treat your Dupuytren's or Ledderhose (palmar or plantar fibroma(s). Remember Dupuytren's is the blanket term when we are speaking of Dupuytren's Disease/Contracture or Ledderhose.
They may need to call you back. I found when I spoke to the nurse/assistant they almost always tried to help me while on the phone – they are accustomed to asking and answering questions. All of the RO's that I reached out to looked into the disease and they responded. Normally I received a call back the same day or the day later. Most of the RO's have never heard of our disease and probably have never treated it.
Be patient but diligent. If they are willing to help, then ask if they want to reach out to any experienced RO's.
If so, you can email them contacts of RO's that will help them understand protocol, depth, protocol. (DART Admins can provide you with RO's willing to help).
Also include this link of the RO's so they can see if they know any of them – oftentimes they have met them at school, a seminar, etc. RADIATION ONCOLOGIST LIST (dupuytrens.club)
IF YOU EMAIL YOUR PROVIDER YOU MAY WANT TO MENTION: Thank you for your willingness to explore/discuss this treatment, which has the potential to make a huge difference to those of us experiencing a rare and potentially debilitating disease. And thanks to [name] on your team for their assistance with my inquiry.
• Make sure you include the RO's name, Facility name, address, phone number AND email address. Don't think the RO will go out and seek to find some random RO. This will be work on your end, however a great opportunity to get treatment close to home and expose them to another disease they can treat.
Also, ask for their email address to send to them Dr Seegenschmiedt's Clinical Study. (You will need to download this file onto your personal computer so you can attach it to the email). Prof Seegenschmiedt articles from IDS - Google Docs
In this same email attach the RO's they may contact that are experienced with all their information. You may want to include this link to other studies about RT for our disease. INIS Repository Search - Search Results (iaea.org)