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Experience with Progression of Dupuytren
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01/03/17 15:32
dejelliott 
01/03/17 15:32
dejelliott 
Experience with Progression of Dupuytren

I was recently diagnosed with DD in my right hand. I am 37yo with no family history. Nodule appeared after a biking accident and trauma to area close to the new nodule. Nodule appeared ~ 30 days after the injury. It progressed quickly but seems to have slowed for the past few months. I am considering RT but physicians are hesitant to proceed due to my young age and the risks of RT for secondary cancers. We are going to monitor progression and I will receive RT if things seem to progress further.

Please share your experience with how quickly your DD progressed from first being noticed. Has anyone seem regression without treatment? I am unsure how to proceed because I don't want to miss the early onset time where RT may be effective for DD treatment.

Thanks!

01/03/17 19:15
spanishbuddha 

Administrator

01/03/17 19:15
spanishbuddha 

Administrator

Re: Experience with Progression of Dupuytren

Not quite what you're asking but: I had apparently successful RT in one hand a few years ago. Then just over a year ago I was doing some 'mechanical' work for my daughter with the wrong tools. I hurt my hand several times doing it before stopping. The very next day I had a new prominent sore nodule. A few days later another one adjacent. They grew and remained tender for several months and had a functional impact on the use of my hand.

I started investigating RT second treatment options, and lining up a doc for NA.

Now a year or so later, they no longer hurt and have settled into hard diffuse lumps with a hint of them joining to make a cord. There's no obvious extension deficit but I can make them hurt if I pull beyond their limit. But I think they've quiesced or gone dormant, or are just now changing so slowly as to be not noticeable day to day or week to week.

02/18/17 15:18
LSLE 
02/18/17 15:18
LSLE 
Re: Experience with Progression of Dupuytren

I'm sorry to hear about your recent diagnosis. I'm sorry but I cannot offer any suggestions regarding your treatment, but I can share my progression history.

Since I was about 12, I noticed that I could not easily and completely straighted my left little finger. I had noticeable and painful nodules in my left ring finger beginning in my late teens. I have a significant family history with DD, with my grandfather, mother and an aunt having very dibilitating cases. I was officially diagnosed at age 50 with DD in both hands (I am a female). Within 3 or 4 years I can feel and see an increase in my DD, but with little impairment in my daily and usual activities.

For me, the progression has been very slow and I've received no therapy for any symptoms. I am most worried by the obvious contractions in both thumbs, especially since I am a musician and additional contractions will soon begin to limit my ability to play and perform. At this time it seems that only my index and middle fingers on both hands will not be affected.

I cannot see a connection, personally, between any injuries and an increased progression of my DD. I currectly have nerve pain in my right thumb in the area that is contracting, and this may be connected to the developing cord contraction. I have the occasional nodules and joint flare ups in the second joints of my fingers (the 2nd joint in from the finger tips), but these do not seem to be related to the DD. If I ever thought something occurred suddenly (nodules or an increase in the contraction), it's because I likely did not notice it at first. For me this is a very slowly progressing disease. I know I will face operations or therapy at some point, but not likely before I'm in my late 50s or early 60s (or later).

02/19/17 09:54
wach 

Administrator

02/19/17 09:54
wach 

Administrator

Re: Experience with Progression of Dupuytren

It is quite rare that Dupuytren nodules disappear without any treatment. If they do, they probably were not Dupuytren's in the first place. The progression of Dupuytren contracture is very difficult to predict. It may take a year until the finger is contracted or 10 years or the finger might not contract at all. And that might even apply to different fingers of the same person. The specific location of the nodule might play a role in the progression. If the pulling forces on the nodule when using the hand are bigger, the contracture might come faster.

As your nodule slows down growing it might just become dormant. Having RT if it keeps growing sounds reasonable. And BTW I had my first RT when I was 35. That's more than 30 years ago and I have still no problems in that part of my hand. I am glad I did it.

Wolfgang

dejelliott:
I was recently diagnosed with DD in my right hand. I am 37yo with no family history. Nodule appeared after a biking accident and trauma to area close to the new nodule. Nodule appeared ~ 30 days after the injury. It progressed quickly but seems to have slowed for the past few months. I am considering RT but physicians are hesitant to proceed due to my young age and the risks of RT for secondary cancers. We are going to monitor progression and I will receive RT if things seem to progress further.

Please share your experience with how quickly your DD progressed from first being noticed. Has anyone seem regression without treatment? I am unsure how to proceed because I don't want to miss the early onset time where RT may be effective for DD treatment.

Thanks!

07/26/17 22:20
bstenman 
07/26/17 22:20
bstenman 
Re: Experience with Progression of Dupuytren

I know of two year old children given extensive XRT for cancers and they are at risk of developing other cancers later in life. With Dupuytren's the XRT is to the surface layers of the skin and the equipment is calibrated so the radiation is focused at the layer with the connective tissue. The radiation does not even get to the bones in your hand. Compare that to an X-ray of your head by your dentist.

Cancers take 20-40 years to develop in the case of UV radiation from the sun and chemically induced cancers as with the consumption of more than an ounce of alcohol a day (and half that amount for women) increases the risk of certain cancers including colon cancer, pancreatic cancer, breast cancer, and bladder cancer, bu up to 60 percent but not too many family doctors are telling patients not to drink any beverage with alcohol.

Usually the progression of the disease in the feet is more gradual as the process of walking will continue to break up the fascia where the disease tissue is causing a problem. Xiaflex might help but it is not currently authorized for use on the feet.

In the final analysis it is a subjective decision and not one where you should rely on the advice of a doctor as they have no skin in the game and for insurance reasons they will always stick with advice that entails the least risk on their part.

10/17/17 20:22
ondie 
10/17/17 20:22
ondie 
Re: Experience with Progression of Dupuytren

I am a 39 year old woman. I have a family history of dupuytrens, with variation in the rate of progression. I developed pain, then nodules, and then a puckering in my left hand over a relatively short timeframe. I elected to do radiation, in part because the success rates are so high and the level of radiation so low, that the likelihood of cancer / other adverse consequences seem low.

I relied pretty heavily on the studies outlined in the NICE guidelines: https://www.nice.org.uk/guidance/ipg573
which are relatively current.

I finished radiation in july of this last summer. my hand hurts significantly after any exertion, like a dull arthritic pain. but it is manageable. no other progression. my hand itched for a while, but that is now resolved.

Edited 10/17/17 20:23

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