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Oh Boy!
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03/21/2010 02:40
flojo 
03/21/2010 02:40
flojo 
Re: Oh Boy!

Diane,

Your comment:

Now I'm wondering what the relationship in "active" is between one hand and another--if it's "active" in one hand, does that mean it's also "active" in the other and on should consider RT in that hand? Purely academic in my case since I had new nodules in each hand.


Interesting to think about. It seems to me that each of my hands is very different. One hand could almost be another person's hand so far as the similarities of progression It's all just so weird! My left hand may follow the same trend as my right hand, but now, it is hard to tell. My left hand is showing some cording and I will try to notice is progress is similar. I hope my left hand will not try to compete with my right hand!

03/21/2010 03:52
moondanc 
03/21/2010 03:52
moondanc 
Re: Oh Boy!

Flojo,

I'm sure glad I'm not the only one with weird hands . I loved your comment about competion between them--a Dupuytren's dukeout!

03/21/2010 08:01
wach 

Administrator

03/21/2010 08:01
wach 

Administrator

Re: Oh Boy!

To Diane (moondanc):

"... Now I'm wondering what the relationship in "active" is between one hand and another--if it's "active" in one hand, does that mean it's also "active" in the other and on should consider RT in that hand? ..."
"Active" refers to a growing nodule. If you have a growing nodule in one hand it doesn't mean that you also have one in the other hand. Radiating the other hand would not just be in vain but it would also impose unnecessary risk and it would prevent further RT if you develop a nodule in that hand sometimes later. RT does not work preventively in that it avoids growth of new nodules at some later point of time. Even if you have a nodule in your hand, don't have the full hand radiated, just the nodule + some margin around it. That will allow having RT in other areas should you later develop nodules there.

"As far as considering whether or not to do RT as is often noted, the risk of cancer in the hand after RT is only 1-2% after 20 years--a risk well worth taking, I think, for those of us 60 or older. ..."
A cancer risk of 1-2 % would be very high and would probably rule out RT for non-malignant diseases, like Dupuytren's. Hvaing no reported cases at all the risk can only be estimated. The estimated risk for cancer after RT of Dupuytren's disease is .02 - .2 % http://www.dupuytren-online.de/downloads...20Dupuytren.htm.

"As far as doing RT right after NA, my radiologist explained to me that RT is used to prevent scar tissue in some patients, especially those prone to keloids. He uses it on some cancer patients. Even an NA procedure results in scar tissue and if that can be avoided by having RT ASAP afer NA, one minimizes the risk of further contraction simply because of scar tissue formation after NA."
The scarring after NA is very minimal and has no risk of keloids. Using RT to suppress this minimal scarring would really be a mistake, in my honest opinion.

Wolfgang


Edited 03/21/10 10:04

03/21/2010 15:12
lori 
03/21/2010 15:12
lori 
Re: Oh Boy!

Flora,

The symptoms that told me my Dups was active were:

1. That tingling or a feeling of something crawling inside my hand.
2. I had pain that went from my hand all the way up to my shoulder.
3. Watching my cord get longer and drawing down my middle finger.
4. Losing my grip on objects, a tightening and puckering of my hand around the cord that was visually changing.

All these went away after RT and I have not had any of these symptoms since.

Lori

03/21/2010 18:08
moondanc 
03/21/2010 18:08
moondanc 
Re: Oh Boy!

Quote:



To Diane (moondanc):

"... Now I'm wondering what the relationship in "active" is between one hand and another--if it's "active" in one hand, does that mean it's also "active" in the other and on should consider RT in that hand? ..."
"Active" refers to a growing nodule. If you have a growing nodule in one hand it doesn't mean that you also have one in the other hand. Radiating the other hand would not just be in vain but it would also impose unnecessary risk and it would prevent further RT if you develop a nodule in that hand sometimes later. RT does not work preventively in that it avoids growth of new nodules at some later point of time. Even if you have a nodule in your hand, don't have the full hand radiated, just the nodule + some margin around it. That will allow having RT in other areas should you later develop nodules there.

I was just musing here, not really pertaining to my own case. I have nodules in nearly 3/4 of both of my hands and those were the areas subjected to RT. However, I only did one course of 3gys X 5 days on each han, to allow for future radiation. I'm not sure I understand "RT does not work preventively in that it avoids growth of new nodules at some later point in time." Are you saying that the only purpose of RT is to prevent further growth of existing modules?

I'm having a problem with word count so I'll continue in next message.
Diane

03/21/2010 18:16
moondanc 
03/21/2010 18:16
moondanc 
Re: Oh Boy!

To Wolfgang:

Quote:



To Diane (moondanc):

The paper referred to in your original post says says, "To calculate the risk only the skin is taken into account. Other irradiated parts of the hand are ignored because there the risk is far less (but we are still trying to assess the risk for sarcoma)." I'm sure it's important to try to estimate risk exclusively for RT for Dupuytren's but I don't understand why experience--of my radiologist and others-- and studies from radiation for other purposes--besides heel spurs cannot be used. I was told the cancer risk to my hands was for all types of cancer, not just skin.
The paper also says, "If both hands are irradiated, then the dose and risk of cancer are doubled." I was told the risk was not doubled but that it was specific to each hand and to that hand only and not to any other parts of the body. So if there's 1% risk of cancer in the RH, there's 1% of risk in the LH, it's not combined into a 2% risk of cancer in one of the hands according to my radiologist.

"As far as doing RT right after NA, my radiologist explained to me that RT is used to prevent scar tissue in some patients, especially those prone to keloids. He uses it on some cancer patients. Even an NA procedure results in scar tissue and if that can be avoided by having RT ASAP afer NA, one minimizes the risk of further contraction simply because of scar tissue formation after NA."
The scarring after NA is very minimal and has no risk of keloids. Using RT to suppress this minimal scarring would really be a mistake, in my honest opinion.

Again, and I should have been more clear, I was referring only to my case. I didn't have RT to prevent scarring and scar tissue after NA--I did it to try to arrest the disease. What I did do in the case of my second hand to undergo RT was have it done as soon as possible AFTER NA to get the possible added benefits of alleviating scar tissue formation which was confirmed to me to occur, although minimal, by 3 top hand surgeons, 2 of them doing NA.

Interesting discussion, thanks--

Diane

03/22/2010 05:24
wach 

Administrator

03/22/2010 05:24
wach 

Administrator

Re: Oh Boy!

Yes, that's correct. RT does not prevent growth of new nodules. It only affects existing ones.

In your other post you wrote regarding risks "So if there's 1% risk of cancer in the RH, there's 1% of risk in the LH, it's not combined into a 2% risk of cancer in one of the hands according to my radiologist." - That's correct but the risk calculation includes the area radiated. If you double the radiated area the risk doubles.

Wolfgang

Quote:



... Are you saying that the only purpose of RT is to prevent further growth of existing modules?

Diane




Edited 03/22/10 07:30

03/22/2010 13:23
cindy850 
03/22/2010 13:23
cindy850 
Re: Oh Boy!

But how many people on here that had RT got new nodules or reactivated some of the old ones or had contracture after your treatments? And if that happened what was the time spam and what treatment did you do when new problems showed up? I'm just curious to see how many people had problems.

03/22/2010 13:55
wach 

Administrator

03/22/2010 13:55
wach 

Administrator

Re: Oh Boy!

Cindy,

first, to avoid a misunderstanding: I am a patient, too. Anything I post is just the opinion of an educated patient.

I myself developed many new nodules and cords (10 alltogether?) elsewhere after my first RT. I had then most of them also radiated. Small initial nodules mostly "disappeared", already developed cords seem to have slowed down in growth. Alltogether I am quite satisfied with the results of my RT. The first nodule was radiated about 25 years ago and has not yet come back, the finger is still straight and fully functional.

But it is also important to understand that for the time being there is no cure for Dupuytren's disease, just various means to slow it down in the treated instances or to make bent fingers straight again.

Wolfgang

Quote:



But how many people on here that had RT got new nodules or reactivated some of the old ones or had contracture after your treatments? And if that happened what was the time spam and what treatment did you do when new problems showed up? I'm just curious to see how many people had problems.




Edited 03/22/10 15:56

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