I had a four-month follow up consult today with my RT physician (an oncologist). I completed first round of RT on right hand in April, the second round on the same hand in July. All went fine and the symptoms appear very notably reduced, most notably a very prominent reduction of a very palpable thread extending well into my palm at more or less a 135 degree from the thumb.)

I first noted symptoms of DD in the right hand just about a year ago. It spread very notably and quickly, with only the ring finger bumps at first, then involvement all to the right of that area throughout the plan and even up the joint of the thumb. In fact, we expanded the mask for my second round of RT to expose a broader area.

So things seem to have done pretty well on that hand. Some months back, I noted a clear double bump in the palm area (below ring finger) of the LEFT hand. The bumps have progressed and are reasonably prominent, clearly visible. Unlike the right hand, there seems to have been little if any 'spread' as of yet in the left hand.

I spoke today with my MD about when to start RT on the left hand. He is a wonderful MD and person, and has been frank with me that he is knowledgeable but not "a real expert" in DD. (He is, btw, one of the US physicians listed on this site, and I would highly recommend him.)

I remain a bit hesitant about starting RT on the left hand, given how much the disease spread in the right hand. By the same token, I've had symptoms in the left hand now for 6 months or so, with minimal if any spread beyond the ring finger palm bumps.

My MD was somewhat hesitant to chart a clear course of RT at this point, though he did tell me he would do it if I wanted him to, obviously treating ONLY the existing bumps. Given the rapid spread in the (now treated) right hand, I'm still thinking it may be best to wait a bit.

MD told me to certainly contact him should I see any sign whatsoever of any even minor contracture in the untreated left hand. But I thought I had read elsewhere that it may be too late to start RT if there is any degree of DC going on?? He seems hesitant to start RT now, more or less left the decision to me and said he will do it if I ask, limited only to the relatively small symptomatic area on that hand.

FWIW, I am a generally healthy 57 year old guy. One (of 4) brothers has DD, and in his case he had spread but no contracture for maybe 4 years or more. He then very rapidly developed a pretty severe contracture all of a sudden (in a matter of weeks, after years of DD but no contracture) and had to have major surgery on that hand.

So there you have it! Just curious if the forum has any sage advice or comments or caveats about when to commence RT on 'the other hand.' Many thanks to all!

Edited 11/16/13 05:48

Sorry -- thanks for catching that! It has been a long day, complete with a water line break at home. Anyway, I corrected. Treated had was the RIGHT hand, competed. LEFT hand has more minimal signs of DD, but clearly some. Interested in feedback on determining 'ideal' timing for pursuing RT on the untreated LEFT hand!

The problem with your doctors approach (in my opinion) is that there is likely diseased tissue beyond what he is finding by observation, just as in your experience. Many times just on this forum people have had nodules pop up just outside of the treated area within months. Irradiation of the "healthy" tissue is not a problem with this level of radiation according to my doctor. There will always be irradiation of some healthy tissue in almost every procedure.

"BTW (and FWIW), he has mentioned a few times a patient he has worked with over the years who has come back to have several additional areas of a hand treated after it spread." I would think he would realize that the diseased tissue often is greater than what is obvious. In my hand that I had surgery the diseased tissue was much more widespread than what was evident on the surface.

I had my entire palm and up to my DIP joints irradiated.

Edited 11/16/13 06:38

The picture on top of http://www.dupuytren-online.info/radiation_therapy.html is a good illustration of perceived and actual disease spread.

GaryBall:

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.....my understanding is that Pro S. radiates diseased tissue plus a 2 cm margin....he is also is able to find disease by hand palpating that you as the patient are totally oblivious to......this means large areas are radiated.....

tgm1327, I would suggest that your question be broken down into three subquestions: when? where? and how?

HOW - it seems like your doctor is following best practice re. RT dose etc. (30Gy over two treatments)

WHEN - If you look at the link http://www.dupuytren-online.info/radiation_therapy.html and look at the figure down the page that has the bar graphs you will see significant advantage is getting treatment within the first 1 to 12 months. The disease must active and yours is active at this point.

WHERE - this seems to be your real question. Where on the palm should you irradiate? What is required is that your palm be palpated by an experienced practitioner and the nodules and cords be marked up accordingly. Then apply a 2 cm margin longitudinally and a 1 cm margin laterally to form that target treatment site. Very few RT physicians will have the experience to do this palpaption. You could go to a hand specialist to mark out the cords and nodules in pen on your hand and take a photo of this marking to present to your RT doctor. The hand doctor will most likely advise against you getting RT treatment but all you want is the marking.