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Can it be too early for R/T?
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11/04/2016 20:12
chicago21 
11/04/2016 20:12
chicago21 
Can it be too early for R/T?

Hi All,

I was diagnosed with DD back in February (after noticing a nodule the prior October). I saw two orthopedic surgeons, both of whom have suggested a wait-until-bad-enough-for-surgery approach. However, I would much rather be proactive about this, so am leaning toward radiation therapy, especially given that it seems to be generally effective for those like me (nodule and minor chords present, but no contracture). I have gone to see two different doctors who can perform the R/T, but the one concern they both echoed was around my age. I am 32 y/o, so given I am on the younger side of the spectrum, their concern is that it creates a longer window for potential secondary effects. Given such, my question is: can it be too early for R/T?

From what I have read, R/T is most effective when done early, so that supports doing it now. However, given the concern from the doctors, I am wondering if I should allow for it to progress until there is the slightest amount of contracture and then have the R/T performed. This latter approach doesn't sound ideal - and certainly not consistent with my general approach toward things - but I am open to feedback. Thoughts?

Lastly, when it comes to the secondary effects, I understand the concern, but from what I have read, there does not seem to be a strong incidence rate of these secondary effects and R/T for Dupuytren's (given the dosage and depth is much lower). Are there any specific studies or guidance I should consider researching?

Any input would be much appreciated. The notion of halting the DD before it progresses sounds ideal, but I would to make sure I am considering all factors. Thanks!

11/05/2016 07:47
wach 

Administrator

11/05/2016 07:47
wach 

Administrator

Re: Can it be too early for R/T?

Hi chicago21! My 5 cents: I had my first RT at the age of 35 and never any regret (being 68 now), and I believe the earlier the better. When an "infant" nodule is irradiated there is a fair chance that it will vanish completely, at least to an extent that you can't palpate it anymore. When you wait until you have some contracture, the nodule probably already started converting into a cord and then the odds that RT will at least stop progression are not that good anymore. The chances that RT will reduce contracture are pretty much nil.

Wolfgang

11/05/2016 07:58
spanishbuddha 

Administrator

11/05/2016 07:58
spanishbuddha 

Administrator

Re: Can it be too early for R/T?

Hi Chicago

RT is usually done as a treatment in the early stages. It is most effective during a specific active phase of proliferation which means fast growth of nodules and cords over a few months, rather than slow progression over years. In general terms if there is no progression RT does not act as a prophylactic and prevent future growth or occurrence of the disease. Further, to really complicate things, for many people the diseases only progresses slowly and never leads to a contracture. RT is usually a one chance treatment, so that one chance needs to be chosen carefully.

At 32 you are quite young, and the possibility is you will have a more aggressive form of the disease. Your age is also quite young for RT given the calculated risks, although the risk from low dose superficial RT given for DD is very small. http://www.dupuytren-online.info/radioth...de_effects.html Others younger than you have chosen to have RT. However, there is no real normal case as everyone is different, and there is a good chance your own DD will progress slowly too.

If your hands are showing other signs of symptoms right now, soreness, tingling, pulling, nodules or cords developing within weeks and months then I would seek a radiologist experienced in treating DD as you are a good candidate. If there are no or few other symptoms, then start a weekly or monthly photo log with notes of the symptoms so that you have an objective measure of progression, or the lack of. In either case find a doctor who might treat you so that you are ready. But timing is everything, and that does not just mean early, but early and active with some recent progression.

Some people visit ProfS in Hamburg not just for the treatment but to help with the assessment. He uses a scoring system along with the physical examination to make the recommendation on treating with RT at the time or waiting. It comes down to the physicians experience. In my own case as an example he declined to treat one hand, as although I had early signs there were not enough symptoms of active progression at that time. The RT 'shot'would have been wasted. I started the photo log and two years later a sudden surge or spurt of nodule growth with soreness meant I knew for myself the timing was right.

Best wishes SB

11/07/2016 16:15
chicago21 
11/07/2016 16:15
chicago21 
Re: Can it be too early for R/T?

Thanks both. Much appreciate the insights!

11/11/2016 13:42
twoposhyorkies 
11/11/2016 13:42
twoposhyorkies 
Re: Can it be too early for R/T?

I would like to add that just considering when to do RT is only part of the decision. On the Dupuytrens Disease Support Group, we encourage our members to think through all of the implications of RT as a treatment option. What happens if it fails? Can you have a Re-RT? When, at what dose? How does that affect your ability to have a salvage NA, Xiaflex or Surgery? Can you even find a doctor who will treat you if you have had prior RT. These are all questions that should be explored and answered before you start treatment. We encourage our members to ask their doctors to form a collaboration and where there is no follow up hand surgeon or podiatrist in place before starting RT, to ask the Radiation Oncologist to reach out to these physicians on behalf of their patient for follow up care and to ensure that the patient is not left hanging. I have had RT to both hands and one foot completed in May 2015. The disease came roaring back in my foot exactly one year later and I had a re-irradiation of the foot in July of 2016. I am administrator of the Dupuytrens Disease Support Group where we have 10 forum expert physicians who answer questions on the disease and it's treatment. We openly discuss all aspects of the disease and the interaction and possibility of a number of different treatments and how one affects the other. Join us too! https://www.facebook.com/groups/879351412113444/

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