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Radiation Advice PLEASE?!?
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12/14/18 12:42
harryzone 
12/14/18 12:42
harryzone 
Radiation Advice PLEASE?!?

I contracted DD about 6 weeks ago. Am 62 years old and use my hands a lot as a musician and a writer. One morning I woke up with a lump in each palm and since then it seems like 2 new ones are forming under the skin. Slight nodding appears from the original lumps down toward my wrist about 3/4 of an inch. Im concerned I have an aggressive form and want to respond with an aggressive treatment.

Was all set to have radiation therapy when I did a last minute search and found this (I probably had read this before but for some reason reading it again AFTER a decision to get radiation must have made me more aware of what it said):

LINK to web page on radiation written by Dr Eaton who seems to be a pretty objective, reasonable and straight forward expert

https://dupuytrens.org/radiation-and-dupuytren-disease/

The paragraph that set me back is this one:
"The lack of solid evidence despite many years of experience may have more to do with statistical difficulty studying Dupuytren disease than any lack of effect, but the reality is that available data does not show a strong difference comparing treated versus untreated outcomes. The logic behind radiation for Dupuytren disease is also complicated: the early effects of radiation are helpful for inflammatory, proliferative conditions such as the nodular stage of Dupuytren disease, but late effects stimulate fibrosis – exactly the opposite of what you would want for a fibrotic condition. In addition, Betz reported minor, but chronic issues of skin thinning and peeling in about one third of patients undergoing radiation for Dupuytren disease."

So here's a guy who gets a lot of kudos from the DD community basically saying that radiation therapy:
1) it makes no difference and 2) it stimulates fibrosis which is not good and 3) had undesirable side effects

Now Im unsure what to do. After reading that why would anyone opt for radiation? In addition I've gone to 2 respected hand ortho guys who basically said radiation is a waste of time. And yet there seems to be a lot of positive commentary, articles, research that points toward radiation as a valid treatment option. But when I read the above article and when I listen to the hand experts it seems like thats just all kind of "make believe"

Anyone out there have an alternative or corroborating point of view. IM JUST TRYING TO MAKE AN INFORMED DECISION AND AS YOU ALL KNOW THERE IS NO ONE RIGHT ANSWER. And there is no one "out there" to council me on this decision.

Any help would be appreciated.
Thank you
Harry

12/14/18 14:18
wach 

Administrator

12/14/18 14:18
wach 

Administrator

Re: Radiation Advice PLEASE?!?

Welcome to our Forum, Harry! Before getting into details of possible therapies your diagnosis should be confirmed. Lumps in the palm can have a variety of causes and it is of utmost importance to have those firmly diagnosed before embarking on any ind of therapy. Youi might have a look at "First exclude other causes" on https://www.dupuytren-online.info/dupuyt..._therapies.html and, most importantly, consult a hand surgeon or expert on Dupuytren's. The fact that your nodules have developed within weeks is relatively uncommon and might point to something else than Duüuytren's, although sometimes Dupuytren npodules do grow quickly but usually it takes months, sometimes years.

Wolfgang

12/14/18 14:46
Prof.Seegenschmiedt 
12/14/18 14:46
Prof.Seegenschmiedt 

Re: Radiation Advice PLEASE?!?

Dear Harry

To make Your decision even "more difficult" You should address Your question with some own questions related to Your actual disease status which generally determines which policy is probably the best depending on the stage of the disease. You may also present Your hands on a photograph showing the location of the nodules and changes.

PERSONAL RISK ASSESSMENT:

(1) Any Family Members affected (Father, Mother, Sibblings etc.)
(2) Heavy mechanical work with Your hands
(3) Any trauma to the upper extremities (Fracture, Injury, Operation)
(4) Any of the following diseases: Thyroid disease, Diabetes mellitus, Liver Disease, Perfusional Disorders (Raynaud), Any Form of Collagenosis
(5) Any of the following risk factors: additional Ledderhose Disease, Keloid Formation, Peyronies Disease

PERSONAL STAGE ASSESSMENT:

(1) Nodule Formation: Number, Size and Speed of Development (months, years ...) and Distribution
(2) Cord Formation: Number, Size, Speed of Development (months, years ...) and Distribution
(3) Functional Changes: as a musician (which instrument ?) special functional deficiencies ?
Table Top Test possible ? Any extension deficit in one of Your finger "rays".
(4) Symptoms (Itching, Pressure or Tension, Tightness, Pain etc.)
(5) Other Observations

SPEED OF DISEASE DEVELOPMENT:

Changes within which period of time (how many weeks or months) ?
(1) Continuous progression
(2) Progression with intermittent "periods of quietness"

STEPS OF DECISION MAKING PROCESS

(1) No Treatment - No Influence on Progression - means waiting until the period of surgical or invasive procedures starts. As a Musician You may register functional changes quite early which may impact on Your quality of the performing art and quality of life. You may use "massage" therapy or other types of unproven methods for prevention of progression. No long-term studies are available. You may try for a while and compare the outcome on a regular basis (e.g. for 3 months)!

(2) Radiation therapy is only effective in the early and progressive stage of the disease (formation of nodules, first cords, no or minimal functional deficit; clearly documented progression within 3 - 6 months). Radiation therapy should not be applied in a quiescent situation and not in more advanced stages (e.g. functional deficit >= 10 - 30 degree). For this indication, large clinical studies with long-term follow-up (over 5 years) have already found a chance of about 90% prevention of further disease progression when using RT.

Only if radiation therapy is applied in the more advanced ("fibrotic") stages of the disease the effect of ionizing radiation is inefficient. Radiation therapy addresses the basic mechanism and target cells of the disease, the "inflammatory cells" and proliferating fibroblast pcell population, and leads to a stop of the progression, in some instances even to a regression of the nodules and clinical symptoms. Dry skin may be a late effect; no functional changes on hand and finger function; the chances of inducing "fibrosis" is minimal with 2 radiotherapy series and a total of 30 Gray (the 5% probability to develop fibrosis within 5 years requires a dose of about 60 Gray!). In Your age the potential risk to induce a cancer in the treated area can be estimated below 1% within the next 30 years.

(3) Invasive procedures like percutaneous needle fasciotomy (PNF) or needle aponeurotomy (NA), collagenase injection (CI) or open surgical procedures (partial or total fasciectomy or dermatofasciectomy) are never in any "therapeutic competition" with radiation therapy as these methods are intended for more advanced stages (> 30 degree), for which radiation therapy is NO SOLUTION. The invasive measures only correct a formerly disabled finger joint, which may develop over a few months or several years. Charles Eaton refers to these disease stages, when calling "no effect" of radiotherapy, and he is right with this statement.

As a musician You may not want to wait for a stage in which You may not be able to perform Your art and early intervention and stop of the basic disease mechanism appears to be a quite logical answer.

In my own practice over the past 3 decades, several musicians (playing piano, guitar, flute, violine etc.) had have long-term benefit from using radiation therapy applied with 2 series of each 5 x 3 Gray with a break of 12 weeks in between. Careful examination by a well-experienced physician and long-term follow-up are important criteria for the selection process.

....................................................................................................................................................
With gratitude for all affected patients & medical colleagues who help to advance patient care ...

Edited 12/14/18 20:12

12/14/18 16:02
harryzone 
12/14/18 16:02
harryzone 
Re: Radiation Advice PLEASE?!?

Thank you Wolfgang and Prof Seegenschmiedt. Really appreciate it.

Wolfgang
I've been to two hand surgeons who both said I had Dupuytrens. As to a Dupuytrens expert: Ive tried to locate one somewhere on the east coast and haven't been able to find one. Any help there would be appreciated. The hand surgeons I've visited didn't "believe" in radiation.

Prof Seegenschmiedt
Thank you for responding in great detail. Really appreciate it.

PHOTOS ATTACHED

Personal Risk Assessment:
(1) No family members that any of us are aware of
(2)(3) I am a conga drum player and it is pretty hard on the hands. I also do a lot of pushups and I had wrist pain so I switched to doing pushups on my finger/thumb tips which took away the pain on my wrists but put a lot of pressure on the palm area of my hands (imagine your fingers and thumb tips resting on a table versus a flat hand). Im wondering if that cause a lot of trauma to my hands over time?
(4) None of those diseases as far as I know. In relatively good health although my fasting blood sugars have been in the 90's recently. Am managing with diet plus...

Personal Stage Assessment
(1) Nodule formation: began 5 weeks ago. Seemed to get bigger and develop cord "tails" toward the palm side about 1 or 2 weeks after. Since then seems to be relatively stable BUT my hands feel different. I can tell when the nodules are "active". WILL ATTACH PHOTOS
(3) No loss of function or flexibility. Table top is completely flat. Has not impacted my music (guitar and conga drumming) much if at all. They do seem to get tighter sometimes.
(4)(5) Do feel itchy, tense with some minor pain at times. Comes and goes but is present more than no. The pain is strange. Its not constant at all. It's almost like a nerve impulse or something. Although sometime there appears to be a pain spot right above the nodule that stays around for a few hours.

SPEED OF DEVELOPMENT
Appeared one Saturday morning six or seven weeks ago as I said above. Two things:
-- Lumps are exactly in the same spots on both hands. If I press my palms together they touch exactly
--- Also: to the right of the left hand lump and to the left of the right hand lump there appears to be hard skin areas under the skin. Feels like new lumps forming. Again, they are exactly symmetrical to each other (Actually there is a definite new lump forming on my right hand as you can see in the photo)
----SOMETIMES MY HANDS GO QUIET and it feels like it did pre-lump formation

STEPS OF DM PROCESS
It appears based on your points under this section - when combined with my point of view (don't want it to affect my music. Im retiring soon and had hoped to fill my time playing music professional) that radiation may be a good option. What are the downsides really?

Again any feedback is GREATLY appreciated and I would be more than willing to pay for consultation. Just let me know.

Thanks

Attachment
Right Hand.jpg Right Hand.jpg (13x)

Mime-Type: image/jpeg, 1.115 kB

Left Hand.jpg Left Hand.jpg (11x)

Mime-Type: image/jpeg, 1.347 kB

12/14/18 16:19
wach 

Administrator

12/14/18 16:19
wach 

Administrator

Re: Radiation Advice PLEASE?!?

Experts for radiotherapy of Dupuytren's

https://www.dupuytren-online.info/radiotherapy_clinics.html

Surgeons experienced with Dupuytren's

e.g. Larry Hurst at Stony Brook University in New York or someone from below list

https://www.dupuytren-online.info/NA_list_North_America.html

We generally can't recommend specific doctors because we can't do any Quality Assurance.

Wolfgang

12/14/18 16:28
harryzone 
12/14/18 16:28
harryzone 
Re: Radiation Advice PLEASE?!?

Apologies on my last post. Im all over the place with when this all started. It was 7 weeks ago. In last post I say 5,6 and 7 : )

12/14/18 16:29
harryzone 
12/14/18 16:29
harryzone 
Re: Radiation Advice PLEASE?!?

Thanks again Wolfgang. Appreciate that no one can recommend. I just need names. I can investigate from there. Thank you for engaging.

12/14/18 19:21
spanishbuddha 

Administrator

12/14/18 19:21
spanishbuddha 

Administrator

Re: Radiation Advice PLEASE?!?

harryzone:
Thanks again Wolfgang. Appreciate that no one can recommend. I just need names. I can investigate from there. Thank you for engaging.
Since you have a confirmed diagnosis I would start with the Radiologists on the lists referenced by Wolfgang. A quick forum search shows positive experience from Dr Wong https://www.dupuytren-online.info/Forum_...24754174.html#2 quite close to you, and Dr Weiss https://www.dupuytren-online.info/Forum_...y-0_1957.html#2 a bit further; and you might find more with a more systematic search.

Of the surgeons listed, Dr Pess who treats contracture via NA has a very positive patient feedback. He is knowledgable and supportive of RT, and sometimes treats early sore, inflamed nodules with a steroid injection. You might seek him for a consultation.

12/14/18 20:21
harryzone 
12/14/18 20:21
harryzone 
Re: Radiation Advice PLEASE?!?

Thank you SpanishBuddha. Really appreciate you and others taking the time to help me through this.

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