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Newbie with Question About Radiation Therapy
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04/14/13 21:42
spanishbuddha 

Administrator

04/14/13 21:42
spanishbuddha 

Administrator

Re: Newbie with Question About Radiation Therapy

Brenda:
Hi, This is my first post. I was diagnosed several years ago with Dupuytrens in my right hand, with small nodule and the V pucker; there has been little change in right hand since then.
However, in September of this year (2013) I had thumb surgery. Every follow up visit to surgery I asked about pain in my left palm, which was ignored..."but do you have pain at the sight of surgery?" was all the doc wanted to know. At my 6 month, and last, follow up visit, the swelling was down and it was apparent my palm had two large hard nodules, cords in palm and four fingers, and a very tight hand, no flexibility. This is when the doctor stated that this can happen after surgery, due to the trauma to hand. I am aggressively looking for alternatives to relief, not thinking another surgery makes any sense since surgery brought this on.
Welcome Brenda

It's difficult to know what to advise.

If I read it correctly, you have had DD for several years but the condition was dormant.

Following surgery, and over six months the DD has become active and progressed, mostly unbeknown to you largely because of other side effects of surgery (swelling, pain, stiffness?)?

I think it is difficult to diagnose whether the current problems and lack of flexibility is due to ongoing inflammation from the surgery, or active DD, or another side effect such as rheumatism. It also begs the question: Why did you need surgery on the thumb?

I would seek advice from a hand specialist who I was able confide in, discuss and and have faith. Additionally I would start a weekly or monthly log with photos and notes of symptoms. If the DD is progressing your choices are really 1) wait and observe, 2) steroid shots, 3) removal of risk factors if relevant and possible, 4) consider RT.

Best wishes

Edited 04/14/13 21:44

05/01/13 19:49
cschieber 
05/01/13 19:49
cschieber 
Re: Newbie with Question About Radiation Therapy

Hi Brenda. I had a bad flare after NA which left me wondering what my future options would be as this disease progresses. I'm trying RT right now. A frequent contributor to the Dupuytrens forum, Hammer, said it best when he said that all options cause flares. It's just part of disease and treatment and he should know...he's had them all more than once. So maybe it's a matter of adjusting expectations and proceeding with caution. Your story reinforces my fear and dread of surgery to fix the OA of my thumb CMC joints. Ugh! Probably better to learn to live with the pain. Hope you at least go relief for whatever was ailing your thumb. :)

06/05/13 17:23
christinesurgenor 
06/05/13 17:23
christinesurgenor 
Re: Newbie with Question About Radiation Therapy

I have had 2 operations to date, and the last one on my right hand (little finger, which is as bent as before within 6 months of operation) left me with less function that I had before the surgery. I seem now to have numbness in other fingers and the beginning of contracture in those fingers too. I am now trying Radiotherapy as I couldn't bear more surgery. My hospital consultant has told me not to go down this path, as he claims I will be back with him in 5 years with malignant tumours in my hands. He has also said the treatment is not recognised by the National Institute for Clinical Excellence in the UK (as claimed by clinic in London that provides treatment). Oh, and by the way, he also says that the International Dupuytren Society does not actually exist. Is this a typical response from a medical practitioner?

06/05/13 17:37
wach 

Administrator

06/05/13 17:37
wach 

Administrator

Re: Newbie with Question About Radiation Therapy

I very much hope this was not a typical practitioner's response ...

- I myself had my first radiotherapy 30 years ago and did not develop any malignant tumour but the finger is still fully functional, i.e. I rather escaped surgery due to that treatment. I might have been lucky and it's maybe more meaningful that so far in the literature not a single case has been reported where a Dupuytren's patient developed cancer due to RT of his Dupuytren's

- NICE has endorsed radiotherapy of Dupuytren's http://guidance.nice.org.uk/IPG368

- and yes, the International Dupuytren Society does exist! And a British Dupuytren's Society http://www.dupuytrens-society.org/index.html as well!

christinesurgenor:
I have had 2 operations to date, and the last one on my right hand (little finger, which is as bent as before within 6 months of operation) left me with less function that I had before the surgery. I seem now to have numbness in other fingers and the beginning of contracture in those fingers too. I am now trying Radiotherapy as I couldn't bear more surgery. My hospital consultant has told me not to go down this path, as he claims I will be back with him in 5 years with malignant tumours in my hands. He has also said the treatment is not recognised by the National Institute for Clinical Excellence in the UK (as claimed by clinic in London that provides treatment). Oh, and by the way, he also says that the International Dupuytren Society does not actually exist. Is this a typical response from a medical practitioner?


Edited 06/05/13 17:37

06/05/13 18:05
christinesurgenor 
06/05/13 18:05
christinesurgenor 
Re: Newbie with Question About Radiation Therapy

Thankyou wach. When I spoke with the hospital consultant today, I was beginning to think I'd stumbled into a Science Fiction film, and had completely lost the plot. I have since found a 2010 Dupuytren Symposium Procedings on the internet, and am researching some of the presenters and their topics. I will also check out the UK Society web site.

06/08/13 16:45
annesam 
06/08/13 16:45
annesam 
Re: Newbie with Question About Radiation Therapy

Wondering if there is any evidence that surgery may aggravate DD nodes and spread the disease? Was advised to have surgery but am considering RT as dx says it is very early stage.

06/08/13 19:44
spanishbuddha 

Administrator

06/08/13 19:44
spanishbuddha 

Administrator

Re: Newbie with Question About Radiation Therapy

annesam:
Wondering if there is any evidence that surgery may aggravate DD nodes and spread the disease? Was advised to have surgery but am considering RT as dx says it is very early stage.
If you browse this forum, you will see there are lots of reports by people of DD either first occurring after hand/wrist surgery, or of 'flare ups' with new DD nodules after surgery. Interestingly there are also some people who link surgery to other parts of their body, so not the hand or wrist, as a suspect for a DD flare.

Of course for every such report there are probably lots of unreported no possible additional cases of flares of DD following surgery.

RT is only effective if the condition is 'active'. Usually that means symptoms such as soreness, or development of new nodules, or cords, in the last few months. The dilemma is that very often these early and active cases go dormant either for a while or at least never cause a contracture. Also RT does not help with cords that have already hardened and caused a contracture.

Edited 06/09/13 09:30

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