I'm a 54-year-old male in Iowa, now looking into treatment for my Dupuytren's and Ledderhose. This site has been a big help.
Even though my experience so far is very little, I thought I'd share a couple of pleasant discoveries.
First, about finding a doctor for RT nearby -- it can be done quickly. I read on this forum about patients who found their doctor by contacting a radiation oncology professor at a university. One poster did this at the University of Michigan, another at the University of Minnesota. Well, I gave it a try at the University of Iowa, and it worked for me, too. I sent one email, and a radiation oncologist said he could do it. I met him in a consultation, and now I'll be his first patient for this disease. So, I can recommend to anyone who doesn't want to travel far, if you live a reasonable commuting distance from a major research hospital, just search the hospital's web site for a list of radiation oncologists, pick a professor, and send an email.
Second, about insurance -- coverage has improved. About two years ago, another poster (lauriw) said that after her treatment, she struggled with her insurance company before they agreed to pay for the RT. Well, two years later, and with the same insurance company, I had no struggle -- they pre-approved my treatment when my doctor asked.
JohnG:I'm a 54-year-old male in Iowa, now looking into treatment for my Dupuytren's and Ledderhose. This site has been a big help.
Even though my experience so far is very little, I thought I'd share a couple of pleasant discoveries. ...
I met him in a consultation, and now I'll be his first patient for this disease. So, I can recommend to anyone who doesn't want to travel far, if you live a reasonable commuting distance from a major research hospital, just search the hospital's web site for a list of radiation oncologists, pick a professor, and send an email.
Sorry ! To caution you and say this, but being the FIRST PATIENT doesn't mean that they have alot of EXPERIENCE in treating this disease ...
Many patients have described that OBSERVATION and PALPATION are important to treat the correct area at the palm. Moreover WHICH RT CONCEPT are they using ...
I personally hate to be the "experimental FIRST BUNNY" to make them claim they have experience ... I distrust medicine alot being a physician myself and suffering from Dupuytren and Ledderhose since 10 years. In my opinion a TRUE EXPERT should stand in the begining of a decision tree which can never be reversed again ...
I can understand your concerns for many procedures, but do you think it might be different for RT? 3Gy for 5 days with an eight - twelve week interval and then a repeat performance. This isn't very technical for a person experienced in RT. It is not a "new frontier". The Dr. who handled my RT felt comfortable in doing my whole palm and to the DIP joint in all fingers. Also, she felt there were almost zero dangers involved by irradiating that large of an area.
I can understand your concerns for many procedures, but do you think it might be different for RT? 3Gy for 5 days with an eight - twelve week interval and then a repeat performance. This isn't very technical for a person experienced in RT. It is not a "new frontier". The Dr. who handled my RT felt comfortable in doing my whole palm and to the DIP joint in all fingers. Also, she felt there were almost zero dangers involved by irradiating that large of an area.
As Larry indicated - the RT doctor needs to get the treatment protocol correct and also he/she must treat the appropriate area and dept. Additionally, it is really important to know that the DD or LD is active on the site at the time of treatment. Also, if any significant contracture is present it might not be a good idea to decide on RT before first considering straightening (e.g. by NA) and then timing RT treatment at an appropriate time (soon after NA).
In summary - it does take some experience to decide on the above issues - and more - for treatment. The thing with RT treatment is that you really get just one shot at getting things right.
Larry:Many patients have described that OBSERVATION and PALPATION are important to treat the correct area at the palm. Moreover WHICH RT CONCEPT are they using ...
Sure, I understand all that.
But as long as they apply the standard regimen of doses of electron beams and they apply it to the correct field, is there anything else to it?
And it might be worth knowing that the cost is not trivial, but my insurance will pay the favorable in-network price if I have the treatment here, as opposed to paying 50% if I leave the state in search of someone more experienced.
The radiation oncologist will use electron beams with the dosage and protocol described in one of the recent German papers (I brought two to the consultation -- the 5-year study in Seegenschmiedt's 2012 book chapter, and the 13-year study in the German RT journal by the other German authors). I presented these reprints at the consultation, and that helped guide our plans, although I should mention that the radiation oncologist had already looked one of the papers up before I met him -- this is similar to the experience of other posters who arranged to be the first DD patient for a radiation oncology professor at a research hospital.
One thing the radiation oncologist did not do was palpation, and I mentioned this to him, so he offered to make an appointment with his colleague the hand surgeon to do the palpation and ink outline. Thus, we organized a team of first-timers, not only a radiation oncologist but also a hand surgeon, plus me, all novices at RT for DD. Once again the German articles were helpful -- I showed the surgeon a photo from Seegenschmiedt, with the ink-drawn outlines of the radiation field on the hand, and he imitated that after doing palpation on my hand. After the surgeon bustled out, it was left to me to take my own photo to give to the radiation oncologist. (I nearly ruined the photo opportunity by washing my hand right after the appointment, when I visited the toilet, but luckily the lines were still visible enough that I could retrace them myself with a ball-point pen before rushing home to take the photos -- I mention this partly for it humor value but also so that it's clear that this project isn't as well organized and polished as what you might get in a more experienced clinic, but once again if the dose and field are right, that's all that matters in the end, right?) Aside from the photos, the radiation oncologist intends to use CT and MRI imaging, which I suppose is what is familiar to him, in planning the exposure field.
You can see my photos with the ink outlines attached. Comments are welcome on the photos and dosage (I'm not sure whether to ask for 4 vs. 3 Gy, 10 exposures) -- especially since both physicians are new to this, as am I. I'm inclined to ask for 3 Gy, to reduce the risk of cancer and radiation-induced neuropathy.
Three remarks about the photos: * The question mark surrounded by a dotted outline indicates a region that the hand surgeon said contained a cord in the webbing between thumb and forefinger, and he believes it is unlikely to ever cause a problem. So I'll probably ask that this not be included in the field. * There's a substantial region included on the side of the little finger because the surgeon says I have a tiny abductor cord there, which can grow to do nasty things despite its small size. I haven't seen this portion of the hand included in the field in the photos I've seen from the Germans, so I'm wondering about this. * The small finger PIP contracture is 21 degrees, by the way, and we are aware that this is in Stage I where RT results are not always great. The contracture began in the last year, after about 15 years of just nodes that didn't grow. So I'm guessing this is what you would call "active" -- comments are welcome, of course.
The doctor who just finished my RT irradiated my entire palm and up to the top joint (DIP) of all fingers. She said that with this dose of radiation that there is almost zero long term problems with doing the whole area. That way nothing is missed. She also said that with this dose it would be no problem if it had to be done again by chance in a year (which won't happen). So I would suggest from that viewpoint, you might consider the entire area.
callie:She said that with this dose of radiation that there is almost zero long term problems with doing the whole area.
Thanks Callie. I'm curious, did your doctor put a number on the risk? Wolfgang presented his calculation of the cancer risk in a page on this site, and that's the only place where I've seen the cancer risk quantified -- and I've not seen the risk of radiation-induced neuropathy mentioned at all, much less quantified, for treating DD.
RT is not preventive and can only treat current nodules. How about future Dupuytren's?
Wolfgang
callie:The doctor who just finished my RT irradiated my entire palm and up to the top joint (DIP) of all fingers. She said that with this dose of radiation that there is almost zero long term problems with doing the whole area. That way nothing is missed. She also said that with this dose it would be no problem if it had to be done again by chance in a year (which won't happen). So I would suggest from that viewpoint, you might consider the entire area.
callie: She also said that with this dose it would be no problem if it had to be done again by chance in a year (which won't happen).
Slightly at odds with what ProfS in Hamburg told me.
He said that in exceptional circumstances one half of the treatment (5 x 3Gy) could be repeated in the same area. He did not say what the exceptional circumstances would be.
The general rule has been treat RT as a one chance treatment opportunity. So the timing and phase has to be right. This usually means examination by a skilled Dupuyren's specialist, and not a radiologist who has not encountered Dupuytren's before or only to provide the means of treatment.
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