| Lost password
357 users onlineYou are not loggend in.  Login
Newly diagnosed 33yo and a bunch of questions even after reading forums
 1 2
 1 2
08/17/2017 00:38
pingpong25 
08/17/2017 00:38
pingpong25 
Newly diagnosed 33yo and a bunch of questions even after reading forums

Hi everybody,

Short story: after noticing a lump on my right palm two weeks ago, was diagnosed with Dupuytren's this week. The doctor was 80% certain (20% uncertainty because I'm quite young for that, 33 years old). I live in East Tennessee. White male, no known family history, none of the usual factors (smoking, drinking, etc.)

I've been hitting this forum for the last few days (even before diagnosis), and I think I understand the general gist of it. It seems that at my current stage (pretty sure it's N), the only preventative option available is radiotherapy (RT) as it may be quite aggressive.

Assuming that I want to go that route, I've got a ton of questions that I had not found the exact information on. I very much hope more experienced folks in the forum can help this newbie to avoid expensive mistakes.

1. The timing of RT.

I have seen posts and guidelines that state that the RT should be done during the active phase of DD. Some mentioned the
phase of proliferation of nodules. Others mentioned that the nodule firmness state should be between "tomato" and
"coconut". Some said to get it as soon as possible. Some talked about itchiness. Some recommend to first find out what kind
of "DD person" you are.

My concern is that as an amateur, I'm ill equipped to identify such phase. I can only identify large nodules, and not sure how
hard one should press on one to confirm the state. I'm also not sure about the timeline on this, and what is my time window.
The hand surgeon I consulted with did not seem confident in identifying small nodules either (why would he be, he treats
most with Xiaflex at a much later stage).

What would be your suggestions? I have little hope for the radiologists in the US to be competent in the manner. What other
potential routes can one try? Could MRI or other scans clearly identify the spots? Or do you know of any way to identify a
hand specialist who would be competent in this?

2. Place to take RT: Europe?

Reading the forums and the website information, the first choice to make seems to be USA or Europe. From the European
side, I mostly read about the Hamburg clinic with Dr. S. However, recent posts seem to indicate that he's been out for at
least 6 months now.

Assuming that money and time is not an issue, what are the most competent places in Europe that you know of? Hopefully,
some of the places would actually treat a reasonable number of patients a year.

3. Place to take: US?

The first question is where? Are there places that are at least comparable to Europe? Or with at least a somewhat
reasonable number of patients treated? Or is the only option to just call all of them (some do not seem to be listed on
the website) and try to identify one?

4. Side effects

Have anybody heard/had experience with negative consequences of RT? From what I've read on site and in papers, there
are very little known long term side effects from it.

Thank you very much. It's been a hard time adjusting to the fact that all of us are mortals and can be hit with unexpected at any point for no apparent reason. I've been an active athlete all my life with no issues, and this hit me pretty hard.

And from a scientific point of view, I think the following blog https://www.flickr.com/photos/sharman/16509855917
(posted by another person) completely summarizes my thoughts: we don't know anything about the DD.

I've attached few photos from 2 days ago to give a general feeling.

08/17/2017 07:23
spanishbuddha 

Administrator

08/17/2017 07:23
spanishbuddha 

Administrator

Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

Hi ping pong. Welcome to the forum.

It's difficult to give precise answers to some of your questions, which is why the research is ongoing. Some facts are known, gene bases, pathways at the cellular level, some statistical on rates of progression leading to contracture, statistical links to smoking, diabetes, trauma and so on. Even so there's no cure, and the unpredictable nature of the condition for individuals remains a difficulty for any physician and treatment.

For the majority who get symptoms later in life it does not progress to contracture, but those getting it earlier, such as you might have a more aggressive form needing more ongoing management. Or not! That's the conundrum and difficulty.

To treat with RT or not and when, there is no single rule, early seems better, early in a cycle as well as early in discovery. The Prof in Germany used to use a points based scoring system using systemic health factors, a physical exam, rates of recent progression, size and feel of nodules, blanching, patient reports of pain, cramp, pins and needles, and so on, add in his own experience, and the decision was made whether to treat or not. You have probably seen reports on here of people who seemed ripe for RT, put it off, and their condition went dormant anyway. That's how it is. The converse too, people who seemed appropriate for RT, were treated, and were disappointed that it did not help; they are in the 15-20% of failures. There are no known cases of a cancer directly linked to RT for DD, but some people do report persistent side effects, oedema, nerve damage, dry skin. RT has been used to treat people younger than you, and this is where you need to consult with a radiologist who has experience of treating cancers at much higher radiation doses across all ages, but it remains a relatively low dose, non vital organs, an extremity, and minimal penetration.

There remain clinics in Germany, Essen and Frankfurt, where the experience in treating with RT is high, the UK too now, and some of the US ones listed on our website are building their experience up. Your best option is to make your own decision first on whether to consult or not concerning RT, then interview the radiologist chosen with a list of questions such as those you present here to establish their experience, and reassure your own choice and establish the person to person relationship. You may have seen I recommend people keep a log of symptoms, with photos, so that rates of changes, nodule sizes, flexion or stiffness, can be objectively assessed. I think if you are cautious and delay now to see what happens, that's fine, but you will know when you want to have something done if that ever happens! Where abouts in the US are you?

There are the risk factors, and genetics is one of them. Not a direct cause but a link. Do any apply to you, within your control. It's like the stories you hear about people living in their 90s or 100s still smoking and having a daily stiff drink. Fine, but statistically it does not apply to all as a lifestyle recommendation.

I should mention there are some support groups on FB that have a predominantly US based audience, and there is a lot of experience there which might help you with treatment in the US if you need to. Some groups are better than others though and it depends on the admins or moderators whether you're getting the party line or useful objective information.

Best wishes SB

08/17/2017 07:33
Stefan_K. 
08/17/2017 07:33
Stefan_K. 

Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

Wow, SB, that's a comprehensive reply to the original post which I will bookmark. I don't want to side-track, but where can we read up on the supposed risk of nerve damage from the Dupuytren RT protocol?

Stef

[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017, night splint glove]

08/17/2017 09:02
spanishbuddha 

Administrator

08/17/2017 09:02
spanishbuddha 

Administrator

Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

Stefan_K.:
Wow, SB, that's a comprehensive reply to the original post which I will bookmark. I don't want to side-track, but where can we read up on the supposed risk of nerve damage from the Dupuytren RT protocol?

Stef

[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017, night splint glove]
Hi Stefan, thanks for helping clarify this aspect, I'm not aware of a specific paper linking the RT protocol and dosage for DD to nerve damage. The risk at doses used for cancer treatment are well established, but there are also patient reports on here and FB suspecting nerve damage after RT for DD, one example here http://www.dupuytren-online.info/Forum_E...e-0_2225.html#9. I was trying to say that there are are risks, not just the fear of an induced cancer, and a radiologist is the person to provide the advice.

08/17/2017 09:31
Stefan_K. 
08/17/2017 09:31
Stefan_K. 

Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

Okay, that discussion, thanks for the link. Would be interesting to get an update from petepdx.

08/17/2017 10:57
pingpong25 
08/17/2017 10:57
pingpong25 
Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

Hi spanishbuddha, thank you very much for the extensive answer!

Quote:
There remain clinics in Germany, Essen and Frankfurt, where the experience in treating with RT is high, the UK too now, and some of the US ones listed on our website are building their experience up. Your best option is to make your own decision first on whether to consult or not concerning RT, then interview the radiologist chosen with a list of questions such as those you present here to establish their experience, and reassure your own choice and establish the person to person relationship. You may have seen I recommend people keep a log of symptoms, with photos, so that rates of changes, nodule sizes, flexion or stiffness, can be objectively assessed. I think if you are cautious and delay now to see what happens, that's fine, but you will know when you want to have something done if that ever happens! Where abouts in the US are you?
I'm in east TN. Out of those in Germany and US, who do people have most experience with? It almost seems to me that people go to anyone they can find locally in US or otherwise go to Germany. The issue is I don't know exactly how to find the right person (which would also accept the insurance). Is there a pre-compiled list of questions that should be asked of a radiologist?

Quote:
I should mention there are some support groups on FB that have a predominantly US based audience, and there is a lot of experience there which might help you with treatment in the US if you need to. Some groups are better than others though and it depends on the admins or moderators whether you're getting the party line or useful objective information.
I'm trying to join "DART - Dupuytren's Advocates for Radiation Therapy" group. Is this one of the better groups?

08/17/2017 12:01
spanishbuddha 

Administrator

08/17/2017 12:01
spanishbuddha 

Administrator

Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

The clinics in Frankfurt and Essen seem to have a lot of experience. ProfS used to work out of Essen as well as Hamburg, so his expertise and methodology may well have been passed on. There is a patient report about Essen here http://www.dupuytren-online.info/dupuytr...xperiences.html

Some questions to ask about: the protocol being used, and why, the interval between treatment and why if using the 2x15Gy, or why the 21Gy protocol and not the 30Gy one; how they determine the disease extent in order to map out the irradiated field and the extent of margins; especially at your age - the options for re-treatment within a previously irradiated area; the decision basis for proceeding with treatment, or delaying, and I have given you insight into the methodology Profs used; record keeping and patient tracking and patient follow up; patient references.

The DART FB has a comprehensive file covering questions to ask, lots of suggested Radiology clinics in the US including some in TN. When reading some of the group posts I would be cautious about being too enthusiastic about getting RT just because you have some early symptoms, without considering that DD is usually slow to progress, often goes dormant anyway, the timing during an active cycle is important, it is not a preventative and can still recur, and re-treatment using RT is limited. But it seems that by posting here you are already taking a quizzical and knowledgeable approach. Their reference material is mostly just fine.

09/20/2017 00:55
pingpong25 
09/20/2017 00:55
pingpong25 
Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

spanishbuddha, I sincerely apologize for not thanking you immediately after your post. It helped me tremendously with my research, and trying to figure out my situation.

I scheduled a consultation with Dr. Weiss at Richmond, VA in a couple weeks. One thing that I'm not certain about right now is whether my insurance covers the procedure. I have United Healthe Care, and one of the posts on the site (http://www.dupuytren-online.info/Forum_E...-rt-0_2195.html) seems to indicate that it may be covered. Does somebody know more details, I cannot contact that poster?

10/17/2017 17:08
ondie 
10/17/2017 17:08
ondie 
Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

FWIW, I am a 39 year old woman who very clearly had nodules in my left hand. My mom had progressive dupuytrens and my aunt has had no progression. I underwent radiation therapy using the 5 day protocol, 6 week break, then the 5 day protocol. I chose this protocol because it has slightly better outcomes based on the NICE protocol, with fewer side effects. see: https://www.nice.org.uk/guidance/ipg573

My last radiation therapy was in late July. I have not had any progression, but my hand is definitely changed. Manageable, but I definitely notice a sort of arthritic like ache after any activity. I've stayed active, I still rock climb but have cut out pull-ups.

10/17/2017 18:12
bstenman 
10/17/2017 18:12
bstenman 
Re: Newly diagnosed 33yo and a bunch of questions even after reading forums

The primary factor in having Dupuytren's is one's choice of parents. If your parents are of Asian or African or Middle Eastern descent then you have zero chance of having Dupuytren's regardless of your lifestyle. But if your parents have any Scandinavian ancestry then the odds of getting Dupuytren's are better than one would like.

XRT has been in use for many years and it appears to disrupt the cells that are causing the problems of Dupuytren's. It can halt or at least slow the progression and it the associated risks are less than from sun exposure. The XRT is performed with a machine that is adjusted to focus the radiation in the layer immediately below the skin and not go to the bones. In addition as it is the hand or foot that is receiving the radiation there is no risk of radiating organs as does occur with XRT for internal cancers in the head or breasts or other locations in the trunk of the body.

The primary problem with the XRT is that it is done with low doses over a period of 5 or more days and so one has to find a local facility providing this. There are lots of oncologists who can provide the XRT but my own experience in the USA is that most will not risk their medical insurance policy by venturing into a new area that is also outside their comfort zone.

 1 2
 1 2
experience   spanishbuddha   comprehensive   radiation   Dupuytren   predominantly   radiologist   questions   recommendation   information   treatment   diagnosed   contracture   dupuytren-online   establish   whether   progression   reading   unpredictable   protocol