I have been to three hand doctors who use alternative treatments besides surgery. None of them had anything good to say about the effectiveness of radiation. I.e. , don't waste your money on it!.......ONe of them said don't do anything, you are not at a stage for treatment (and you may never need it possibly),.....another one said come back in 4 months and will see how they look. My conclusion about hand doctors is that none of them want to deal with you until you have an actual contracture, and any other treatment before that will do more harm than good.

Is that correct, about hand doctors, and what they say?

Also....I have been to two radioligists who have said it will help, from a little to perhaps a lot. I have had several nodules in both hands for 4 years but were stable, and not much of a problem.....but just this past 3 months though, they got worst, and one got harder and larger. There are some cords starting to develop and one finger I feel a distinct uncomfortable stretch (my right hand ring finger)....I don't like how it feels at all, and at the base of that finger in the palm I have a harden nodule and it hurts.

Both my hands can still lay flat on a table , though uncomfortable (and I have no contracture yet). The radioligist said, that he thinks I am still at a stage where the radiation will do good. I just don't know about all of this, but I have to do something I feel before it gets even worse.

He also said that he hopes I do not have any finger involvement because that will be harder/tricker to treat with radiation. He is going to do a non-contrast and constrast MRI to see what is going on and where....and then marry a cat scan (as he puts it) to the MRI for mapping out a treatment.

Does this sound like I am going down the right road?

Concern Point 1 as the doctor states: There may be a chance of cancer of my hands down the road, 1% I think he said, and he added, hands don't generally lend themsevles to cancer.

Concern Point 2 as my doctor states: The tissues of my hand will probably be altered and may get thinner in my palm


NEED FEEDBACK, HELP, this is too confusing: Doctors telling me don't do anything, you might make matters worse, wait till it gets worse, other Doctors telling me, treat it as soon as possible or it will get worse.

thank you Lori: I feel exactly as you had, feeling a race against time before the R/T window closed. I am concerned about my fingers too (don't know if I have any nodules but if I do, the Doctor said that will be hard to treat).

I am going to get R/T, but not sure when. The Doctor wants to do a Contrast/non contrast R/T and cat scan first. That is not until Sept 10 and 12. I can only do one hand at a time because they can't put enough contrast dye in me to do two hands at once....(not happy about that).....but anyway I am just hoping my condition does not get any worse over the next 3 weeks or so before I start radiation because I feel at the end of my window I think. I don't know what to do with myself, except wait. I am at the mercy of the institution's scheduling at Univeristy of Miami. I hope The Doctor knows what he's doing, I am his first patient ever with this condition and subsequent treatment plan....it looks like he is going to use the protocols from Dr. Seeg.....in Germany----he printed them out for me.

I have one hard nodule I am worried about that just developed with the last 2 months, and I feeling and seeing a couple of cords developing along with a uncomfortable streching feeling.

However, I thought this might be good, because I thought I read that if the disease is active (if this is considered active), then R/T will be more effective.......IS THAT RIGHT?

ANOTHER QUESTION: Assuming I just caught the window right, is it a case that I must complete two sessions 8 to 10 weeks apart to catch the window or is it suffiencent that I at least started the first treatment?

thanks

Hi Lori,

defining a "treatment window" is not trivial. If one could define a treatment window for RT then it would be probably +/- 1/2 year anyway. So don't worry about it. The rule is that early treatment is more effective than late treatment and and treating within a year after the nodules started or the disease became agressive again is best. Maybe within 1/2 year would be even better? But there are no data beyond the those one http://www.dupuytren-online.info/radiation_therapy.html. So you can only make rough guesses anyway.

The same holds for the type of equipment used for RT. There are no data which is better or worse for Dupuytren's. So why not use those that are available?

Wolfgang

lori:

---

However, I thought this might be good, because I thought I read that if the disease is active (if this is considered active), then R/T will be more effective.......IS THAT RIGHT?

From my understanding RT is only effective as a treatment when DD is active.


ANOTHER QUESTION: Assuming I just caught the window right, is it a case that I must complete two sessions 8 to 10 weeks apart to catch the window or is it suffiencent that I at least started the first treatment?

When I refer to a window of time, I mean that your DD is active and that contracture has either not started or is just beginning to occur. RT is mainly for active DD which includes nodules and the beginning of DD. RT might not help cords. It did with mine but that is not always the case. As long as you start the treatment while your DD is active then you would be what I call inside the window of time that RT is effective.

Lori

Lowell:

---

I have been to three hand doctors who use alternative treatments besides surgery. None of them had anything good to say about the effectiveness of radiation. I.e. , don't waste your money on it!.......ONe of them said don't do anything, you are not at a stage for treatment (and you may never need it possibly),.....another one said come back in 4 months and will see how they look. My conclusion about hand doctors is that none of them want to deal with you until you have an actual contracture, and any other treatment before that will do more harm than good.

Is that correct, about hand doctors, and what they say?

Also....I have been to two radioligists who have said it will help, from a little to perhaps a lot. I have had several nodules in both hands for 4 years but were stable, and not much of a problem.....but just this past 3 months though, they got worst, and one got harder and larger. There are some cords starting to develop and one finger I feel a distinct uncomfortable stretch (my right hand ring finger)....I don't like how it feels at all, and at the base of that finger in the palm I have a harden nodule and it hurts.

Both my hands can still lay flat on a table , though uncomfortable (and I have no contracture yet). The radioligist said, that he thinks I am still at a stage where the radiation will do good. I just don't know about all of this, but I have to do something I feel before it gets even worse.

He also said that he hopes I do not have any finger involvement because that will be harder/tricker to treat with radiation. He is going to do a non-contrast and constrast MRI to see what is going on and where....and then marry a cat scan (as he puts it) to the MRI for mapping out a treatment.

Does this sound like I am going down the right road?

Concern Point 1 as the doctor states: There may be a chance of cancer of my hands down the road, 1% I think he said, and he added, hands don't generally lend themsevles to cancer.

Concern Point 2 as my doctor states: The tissues of my hand will probably be altered and may get thinner in my palm


NEED FEEDBACK, HELP, this is too confusing: Doctors telling me don't do anything, you might make matters worse, wait till it gets worse, other Doctors telling me, treat it as soon as possible or it will get worse.

Lowell,

Your experience mirrors mine very closely. My Duputrens was identified my my sister-in-low who is a hand occupational therapist in early June. I have one node in my left hand currently that has shown up in the last 6 months.

I went down the path of visiting my doctor and then a hand specialist. The hand specialist (surgeon) said there is nothing to do but wait until it gets worse. I then asked about RT. He said it wouldn't be worth the risk of developing cancer later in life. So he was explicitly opposed to it.

Given than my grandfather had it and my uncle has had surgery on both hands for it, I wasn't willing to wait until it gets worse. I contacted Dr. Crimaldi in Charlotte, NC and set up an appointment. He was awesome. He referred me back to a colleague (Dr. Anderson) in Raleigh, NC where I live. Dr. Anderson was at Dr. Crimaldi's practice for 1.5 years and then moved to Raleigh.

Dr. Anderson had treated one patient previously so was very willing to take me as a patient. He scheduled an MRI with contrast on my hand before treatment to make sure they understood the affected area. The radiologist then requested an ultrasound to view the hand better. With the ultra sound he was able to align the sensor and see the node and where it was extending down to attach to the tendon in my palm. It was very interesting to see!

Based on the MRI and ultrasound Dr. Anderson set up the RT sessions last week. I have completed the first 5 day protocol and will return in October for the 2nd week. I haven't noticed any side effects with my palm after the first week.