| Lost password
419 users onlineYou are not loggend in.  Login
24 years old, pretty certain I have dupuytrens. Should I have radiation therapy?
 1
 1
02/26/19 11:17
msj94 
02/26/19 11:17
msj94 
24 years old, pretty certain I have dupuytrens. Should I have radiation therapy?

Hi
I'm 24 years old, male living in the UK. At the end of November/ beggining of dec last year I noticed what I think is a nodule in my left palm between the thumb and index finger, since then the same thing has popped up in the same place in my right palm. There is a small pit at the top of each 'nodule' and the general appearance of my palms seems to be changing. My fingers although not permanently bent in any way feel as if they are being dragged in towards my palms at times. I've not been formally diagnosed yet and am due to see my GP to discuss soon but I'm concerned from what I've read that as I'm young this could progress quite rapidly and become severe. I'm wondering when would be the best time to have radiation treatment?? If it's possible I'd really like to stop the disease in it's tracks. Any help or advice on this would be greatly appreciated.
Cheers!

02/26/19 21:56
spanishbuddha 

Administrator

02/26/19 21:56
spanishbuddha 

Administrator

Re: 24 years old, pretty certain I have dupuytrens. Should I have radiation therapy?

msj94:
Hi
I'm 24 years old, male living in the UK. At the end of November/ beggining of dec last year I noticed what I think is a nodule in my left palm between the thumb and index finger, since then the same thing has popped up in the same place in my right palm. There is a small pit at the top of each 'nodule' and the general appearance of my palms seems to be changing. My fingers although not permanently bent in any way feel as if they are being dragged in towards my palms at times. I've not been formally diagnosed yet and am due to see my GP to discuss soon but I'm concerned from what I've read that as I'm young this could progress quite rapidly and become severe. I'm wondering when would be the best time to have radiation treatment?? If it's possible I'd really like to stop the disease in it's tracks. Any help or advice on this would be greatly appreciated.
Cheers!
Hi and welcome to the forum! Younger people with early signs might have a more aggressive form of the disease, but there’s no one rule for all cases. It’s possible your early symptoms will slow down and stabilise, or continue on with more nodules and pits and cords. Even then you may not get a contracture for some time. 24 is relatively young to have RT, at least without further signs or symptoms that it is progressing rapidly.

I think I would start a photo log book or journal record with notes of symptoms so you can objectively track rate of progression. At the same time seek out a radiologist experienced in treating DD, have a physical consultation with a view to having RT if your journal confirms ongoing rapid progression. The difficulty in the UK is finding radiologists experienced in treating DD. Certainly the (two) private clinics have built up some experience over a few years, I don’t know about those treating on the NHS, and there’s the option of travel to Essen to see ProfS who has the most experience anywhere; any of these would be able to advise on whether to wait or treat now. See the BDS site for clinics/hospitals. http://dupuytrens-society.org.uk/treatme...-organisations/

Have you reviewed the DD possible risk factors? Some you may not be able to do anything about if they apply to you, but some maybe you can. Best wishes

Edited 02/27/19 12:51

02/27/19 22:48
msj94 
02/27/19 22:48
msj94 
Re: 24 years old, pretty certain I have dupuytrens. Should I have radiation therapy?

Many thanks for your reply. I will definetely be looking for a DD specialist to see and hopefully they will advise me on when to have radiation as it's definetely something I want to have looking at the success rates on treatments in patients with early disease. I know there is a Dr about an hour from me in exeter that does radiation therapy for DD but I have a feeling he is quite new to it. The ideal scenario for me would be to see the professor in Essen as from what I've read he is the lead guy in this field but I'm not sure on cost etc. Do you by any chance know a ball park figure of how much he charges for radiation therapy? I have looked up the risk factors the majority of them don't apply to me although I am now decreasing my alcohol intake

02/27/19 23:49
Prof.Seegenschmiedt 
02/27/19 23:49
Prof.Seegenschmiedt 

Definition of Disease Progression and Support of Decision Process

Dear "msj94"

How to define disease progression and decide for early treatment for Dupuytren Disease is not an easy task for a young man in the age of 24. However, "spanishbuddha" has given you and others a pretty good idea, of how to proceed with the new awareness. He proposes a "journal" and a photographic documentation over the next few months.

From my own long-term experience and perspective I would add the following guidance for you:

Do not make yourself too nervous and avoid writing daily notes like a "diary"; it is better to summarize your findings and observations every 4 weeks for about 6 months. This is the period of time, which an experienced radiation therapist will demand to judge on the "progression" as a starting point for the decision to initiate radiation therapy.

Moreover you should use the following criteria to analyze your individual symptoms and physical findings:

(1) The symptom "NODULES":

Observe and describe any change (= increase) of the number of detected nodules, any increase of size of nodules, any involvement of other finger rays than the previously involved finger ray(s), any change of the consistency of the nodules (like "soft" - "medium" - "hard").

(2) The symptom "CORDS":

Observe and describe any development of a first cord or new cords and any increase of the length of the cord

(3) The symptom "FINGER INVOLVEMENT":

Observe and describe the spread of new nodules and cords to the finger base or beyond into the fingers

(4) The symptom "CHANGE OF HAND SURFACE PROFILE":

Observe and describe the development of new wrinkles, folds, pit holes at the hand palm etc.

(5) The symptom "CHANGE OF HAND & FINGER FUNCTION":

Describe possible increased tension or pressure feeling, increase of pain, itching or other sensations; test and observe the developing of finger "bending"; test whether you are unable to perform the "Table Top Test" (example on attached photograph)

(6) SUBJECTIVE EVALUATION:
The evaluation and changes of the above symptoms may be additionally and subjectively graded on a visual analogue scale of 1 - 10.

(7) OBJECTIVE EVALUATION:
Take photographs in defined intervals (e.g. every 3 months) under standard light conditions and mark your palpated or observed changes of the hand palm on the skin with a marker pin. Compare the photographs.

The evaluation should be repeated about every months, thus, that changes may be recorded for at least 3 time intervals over a period of at least 3 months, better 6 months.

Patients like you should receive radiotherapy only if progression - using the above criteria - has been documented for about 6 months, as a "spontaneous stand still" of the disease progression may be possible.

(8) EXAMINATION BY AN EXPERIENCED PHYSICIAN:
Finally, the most important point will be the careful physical examination (palpation and function tests) of both hand palms and eventually also both foot soles by an experienced hand surgeon or radiation therapist. Without this examination no further decision about the necessary procedures (wait & see or radiotherapy or minimal invasive surgery) is possible .

I wish you sufficient patience and diligence in the upcoming months and a good physician as partner.

Prof. Seegenschmiedt, Essen

Edited 02/27/19 23:53

Attachment
Dupuytren_Table-Top-Test_Glas-Table.jpg Dupuytren_Table-Top-Test_Glas-Table.jpg (10x)

Mime-Type: image/jpeg, 27 kB

02/28/19 08:22
spanishbuddha 

Administrator

02/28/19 08:22
spanishbuddha 

Administrator

Re: 24 years old, pretty certain I have dupuytrens. Should I have radiation therapy?

msj94:
Many thanks for your reply. I will definetely be looking for a DD specialist to see and hopefully they will advise me on when to have radiation as it's definetely something I want to have looking at the success rates on treatments in patients with early disease. I know there is a Dr about an hour from me in exeter that does radiation therapy for DD but I have a feeling he is quite new to it. The ideal scenario for me would be to see the professor in Essen as from what I've read he is the lead guy in this field but I'm not sure on cost etc. Do you by any chance know a ball park figure of how much he charges for radiation therapy? I have looked up the risk factors the majority of them don't apply to me although I am now decreasing my alcohol intake
To visit Essen you would of course have to budget for the travel, lodging, day to day expenses, for one week or at least Monday to Friday. I don’t know the current treatment costs, a few years ago I paid 400 Euros so you should expect to budget 500 Euros or slightly more per weekly round for the RT, and total treatment is two rounds and two trips, but you can ask via email if you do plan a visit.

 1
 1
radiotherapy   dupuytrens   treatment   dupuytrens-society   involvement   experience   radiation   therapy   disease   definetely   experienced   radiologists   EXAMINATION   progression   Seegenschmiedt   observations   documentation   possible   EVALUATION   spanishbuddha