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Is it ever too soon for RT?
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03/25/2016 14:41
sloop 
03/25/2016 14:41
sloop 
Is it ever too soon for RT?

I am 52 and 4 years ago developed Dupuytrens in my left hand. Did some research and came across this website and noticed the section on radiation therapy which was really the only option other than waiting and hoping it didn't continue to develop. I had a large nodule in the palm and over about 2 months noticed it starting to change shape so I knew it was growing. I live in South FL so had the opportunity to go to the best dupuytrens doctor out there in Dr. Eaton and he found a Dr. in Boca Raton to do the RT. Has worked great so far 4 years later and no new nodules and the initial nodule has disappeared.

Now unfortunately the other hand has developed a nodule about 1 month ago. So far I can't tell if it is growing and spreading like the first. Will eventually proceed with the RT therapy on this hand as well but was wondering if I should wait a few months. Can it ever be too soon to do the RT? Last time I got the radiation about 6 months after it started.

03/25/2016 16:05
wach 

Administrator

03/25/2016 16:05
wach 

Administrator

Re: Is it ever too soon for RT?

Good to that RT had worked for you! I had my first RT about 1 month after it started and it worked great. I would think the sooner the better. You might have a look at "Radiotherapy - when to apply best?" on http://www.dupuytren-online.info/radiation_therapy.html.

Wolfgang

03/25/2016 18:12
spanishbuddha 

Administrator

03/25/2016 18:12
spanishbuddha 

Administrator

Re: Is it ever too soon for RT?

Prof S in Hamburg often turns away patients who present 'too early'. So using myself as an example, I emailed photos of a hand with nodules and hints of a cord. He agreed based on that there was a possibility that RT was appropriate. But during the consultation, which includes palpation, other health factors questionnaire, and recent symptom history, he recommended NOT proceeding.

Overall he uses a scoring system based on the consultation, which appears to be trying predict your own diathesis, rate of progression and current active state. By doing this he maximises the success of the treatment, since except for specific cases he does not perform a full re-treatment to a previously irradiated area. So on the basis it's a one shot chance, use it effectively.

I think that if you consult with a doctor or radiologist who has plenty of experience of treating DD, and has cases of both success and failure, then follow their guidance.

As a postscript I did have RT for that hand, by him, 3 years later.

03/31/2016 23:49
Peacefulbird 
03/31/2016 23:49
Peacefulbird 
Re: Is it ever too soon for RT?

Thanks for asking this question Sloop, and thanks to adms. for answers. Yikes, now I'm worried, SB. Based on my photos, Prof. S said I should come. For me, it means big travel expenses + lodging, etc. I would hate to get there, and then have him say it's not time. Guess I've just got to HOPE that won't happen. Good luck with your decision, Sloop... I hope it's all good for you.

Wishing you all the best,
Peacefulbird
Washington state, USA
right hand DD, onset Oct. 2015

04/01/2016 05:47
wach 

Administrator

04/01/2016 05:47
wach 

Administrator

Re: Is it ever too soon for RT?

You might consider this an opportunity for a vacation and visiting another part of the world. The RT treatment won't bother you much, will take only 1/2 hour per day at the most, and you will have a lot of time to explore Hamburg and its country side. Not need to worry, just enjoy the trip. Hamburg can be fun. My favourites are the harbour and the miniature wonderland http://www.miniatur-wunderland.com/visit/.

Wolfgang
PS: if you haven't read it yet, Roger's story on http://www.dupuytren-online.info/dupuytr...xperiences.html will give you a first Impression of Hamburg and the RT treatment.

Peacefulbird:
Thanks for asking this question Sloop, and thanks to adms. for answers. Yikes, now I'm worried, SB. Based on my photos, Prof. S said I should come. For me, it means big travel expenses + lodging, etc. I would hate to get there, and then have him say it's not time. Guess I've just got to HOPE that won't happen. Good luck with your decision, Sloop... I hope it's all good for you.

Wishing you all the best,
Peacefulbird
Washington state, USA
right hand DD, onset Oct. 2015

04/01/2016 06:29
spanishbuddha 

Administrator

04/01/2016 06:29
spanishbuddha 

Administrator

Re: Is it ever too soon for RT?

Peacefulbird:
Thanks for asking this question Sloop, and thanks to adms. for answers. Yikes, now I'm worried, SB. Based on my photos, Prof. S said I should come. For me, it means big travel expenses + lodging, etc. I would hate to get there, and then have him say it's not time. Guess I've just got to HOPE that won't happen. Good luck with your decision, Sloop... I hope it's all good for you.

Wishing you all the best,
Peacefulbird
Washington state, USA
right hand DD, onset Oct. 2015
Since joining the forum, you have not said too much about your hands. The ProfS will be looking for existing signs of DD, nodules, cords, other health factors, and more importantly recent or current activity that indicates the rate of progression. It's not for me to judge, but if you have new or nodules increasing in the last 3-6 months, signs of cords, ongoing soreness, it's likely the time is right; but if there is some stability not much happening or recent changes it's probably entering a quiet period of its own accord.

Wolfgang is right, Hamburg in spring or summer is beautiful, plan a vacation and see where it takes you. (I know money can be a concern, myself I took a small loan out since it means two trips, lived and ate quite modestly whilst there, all now paid off).

Edited 04/01/16 09:30

04/01/2016 07:26
Peacefulbird 
04/01/2016 07:26
Peacefulbird 
Re: Is it ever too soon for RT?

Hello SB. My hands? October 1, 2015 - all was clear, no bumps, no issues with either hand. Oct. 15th, out of the blue I noticed a hard lump on my palm, an inch below my ring finger. By January, two more lumps appeared rather suddenly, close to the first one, but not quite as large or hard. That's when I requested a specialist appointment, which resulted on March 10 in me learning I had DD, which I'd never heard of previously. I have very few relatives (Mom and Dad both only children, grandparents and dad died during my youth. Nobody I know of had DD. When I went to the specialist, I complained of soreness, pain, tenderness - enough, sometimes, to awaken me during the night. He gave me a steroid shot, and I think slightly needled the nodules during the process. The result is less pain and no further progression that I can see or feel. I am concerned about my feet too, because of arch pain in past couple of months... unable to wear my normal orthotics.

YES, I certainly do look forward to my trips to Hamburg as a sort of medical vacation! However, if Prof. S sends me home without treatment, I will have emptied my reserve account. From the pictures I sent to him, and my responses to his questions, he said, "come." And so in 6 weeks, this 73 year old, single woman will travel a very long distance, taking a chance to preserve full use of her hands. I shall take photos, keep notes, and write a detailed report for this site to post if they wish.

Thanks for all you do as administrator on this site. I appreciate it so much!

Peacefulbird
Washington state, USA
right hand DD, onset Oct. 2015

04/01/2016 20:21
spanishbuddha 

Administrator

04/01/2016 20:21
spanishbuddha 

Administrator

Re: Is it ever too soon for RT?

Peacefulbird:
Hello SB. My hands? October 1, 2015 - all was clear, no bumps, no issues with either hand. Oct. 15th, out of the blue I noticed a hard lump on my palm, an inch below my ring finger. By January, two more lumps appeared rather suddenly, close to the first one, but not quite as large or hard. That's when I requested a specialist appointment, which resulted on March 10 in me learning I had DD, which I'd never heard of previously. I have very few relatives (Mom and Dad both only children, grandparents and dad died during my youth. Nobody I know of had DD. When I went to the specialist, I complained of soreness, pain, tenderness - enough, sometimes, to awaken me during the night. He gave me a steroid shot, and I think slightly needled the nodules during the process. The result is less pain and no further progression that I can see or feel. I am concerned about my feet too, because of arch pain in past couple of months... unable to wear my normal orthotics.

YES, I certainly do look forward to my trips to Hamburg as a sort of medical vacation! However, if Prof. S sends me home without treatment, I will have emptied my reserve account. From the pictures I sent to him, and my responses to his questions, he said, "come." And so in 6 weeks, this 73 year old, single woman will travel a very long distance, taking a chance to preserve full use of her hands. I shall take photos, keep notes, and write a detailed report for this site to post if they wish.

Thanks for all you do as administrator on this site. I appreciate it so much!

Peacefulbird
Washington state, USA
right hand DD, onset Oct. 2015
You'll love Hamburg. It's quite safe, friendly, everyone speaks English, so easy to travel around, to from the airport, to from the clinic although a short walk might be involved unless you taxi, and Hamburg is small enough to be walked or cycled depending how fit you are or using the 'underground' transit. The hop on off tourist bus is good value for one day too, a different way to see the city, as is a harbour tour. Visit the park on a Sunday and you'll see everyone partaking their particular hobby, I was invited to join in the Tai Chi, there may even be an open air concert. The people at the clinic are friendly, don't confuse the German occasionally snappy guttural with aggression, it just is the way it is. You may have to be patient the first day at the clinic, ProfS can be busy with new patients, after that it's a doddle. Have fun.

04/01/2016 21:35
Peacefulbird 
04/01/2016 21:35
Peacefulbird 
Re: Is it ever too soon for RT?

Thanks, SB... you make me !

Peacefulbird
Washington state, USA
right hand DD, onset Oct. 2015

04/02/2016 01:04
Cherrise 
04/02/2016 01:04
Cherrise 
Re: Is it ever too soon for RT?

Peacefulbird:
Thanks, SB... you make me !

Peacefulbird
Washington state, USA
right hand DD, onset Oct. 2015

Peace,
When do u plan on going ? There is also a good dr that does RT in Fla. and WA STATE per posts on this forum.. U can do a search on the forum for more info. Regarding RT Near you.
U R Very brave to make a trip over seas without a friend to accompany u.
Happy Trails!

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