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Radiation Treatment in Virginia
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flojo 

flojo 
Re: Radiation Treatment in Virginia

My RT covered my entire palm and the metacarpal joints, a little farther up into my thumb. The only "side effect" I had was minimal peeling in the area of the web of my thumb where is is obviously thinner and on the outside edge of my palm on the pinky side. That lasted about a week. It stopped this disease from progressing, increased my grip, etc. I definitely would have it again!!!!!

AP_in_DC 

AP_in_DC 
Re: Radiation Treatment in Virginia

Lori and others -- Lori, you mentioned in another thread that you had a cortisone injection to buy time while you researched options. Then you ended up doing RT. Do you know if there are any concerns about doing RT on a nodule that has been injected with cortisone? Or, do others have thoughts on this?

As I posted earlier, I was diagnosed about two weeks ago, and am now trying to figure out what to do. I saw a second hand surgeon yesterday who confirmed the diagnosis (oh well, I was hoping...) He said in addition to the nodules in both hands and knuckle pad I had identified, I also had some cords developing. But I have no contracture yet.

This doctor said he does NA, and has also had some success with stopping progression with cortisone injections, if done in the early stages. However, he said a cortisone injection would only be appropriate on one of my nodules. (Not sure why and I didn't ask, though I realized later I should have.)

I expected him to be opposed to RT, as it seems like that it usually the case with hand surgeons, and he did say he absolutely recommended against it. When I asked why, he said he thought the RT, esp. the increased cancer risk associated with it, was much too risky a treatment for a benign condition. I had some back and forth with him on this but he remained adamant. He seemed to have the attitude that the disease isn't all that bad, and that NA or surgery can take care of most problems. He even said that even if contractures can't be corrected completely, they are really not all that disabling and don't interfere that much with your life. This is definitely not my attitude, or my impression of the disease from what I've read! (Especially given that I have several markers for a more aggressive disease, including having it on both hands and having a knuckle pad.)

I am debating whether to try a cortisone injection on the one nodule that he said he thought might be responsive -- partly because this all seems to be progressing fast, and I don't want to have to hurry my decision about RT too much, or miss out on a window of opportunity for cortisone if I end up not doing RT. But I don't know if it is a good idea to do cortisone and possibly RT as well. I have a consultation scheduled for Tues. with Dr. Weiss at VCU to discuss the RT option. I will ask her about cortisone, but I'd love to hear from others as well.

Any feedback or experience would be most welcome!

flojo 

flojo 
Re: Radiation Treatment in Virginia

Good idea to have a consultation with the RT specialist.

I considered the increased risk of cancer and decided that less than 2% (some say less than 1%) after 25 years was insignificant for me. The cancer risk is only in the area radiated. It did stop progression of my Dupuytren's so far and that was my goal. I did not/do not have is as aggressive as some who have described theirs on this Forum. As others have described it, it can be VERY debilitating. Mine was affecting my quality of life - couldn't open a bottle of water, decreased span across my hand, contracture of my thumb, etc. Even though it was not my goal for results of RT, that all improved wotj RT, and there is no sign of progression on that hand. My other hand is showing symptoms but does not appear to be very active yet. I'll have RT on that hand in a New York minute if it becomes active.

jocond 

jocond 
Re: Radiation Treatment in Virginia

Ap in DC,

You said you live in the DC area. If you don't mind me asking, what Doc did you just visit that said he does NA?

Thanks,

Joe

newman 

newman 

Re: Radiation Treatment in Virginia

Hi AP in DC. For what it is worth I asked a hand surgeon his views on Cortisone Injection and his view that it may be benificial only in the active stage. Remember most hand surgeons have next to no idea about Radiotherapy. It is like asking the butcher about which is the best vegetable =they are both in the food industry. I will share my experience in 2007 after a repeat surgery I developed numerous nodules and keloids on the scar tissue. I found the Dupuytren Society and asked my surgeon about Radiotherapy.His comment was I would have to be carefull not to have holes burnt through my hand.( He really had no Idea.) I subsequently went to Germany had the RT and as Prof Seegenschmiedt commented there needs to be imput to the surgeons about RT. Dont wait too long if you are considering RT.It works best on the nodules before any contraction. Regards from OZ.

Edited 01/31/10 04:05

AP_in_DC 

AP_in_DC 
Re: Radiation Treatment in Virginia

Thanks for everyone's feedback. It is extremely helpful to hear from those with more experience with this.

Joe, I will email you the doctor's name - rather not post it on the Internet in case he Googles himself and sees it. If anyone else wants the name, feel free to email me.

lori 

lori 
Re: Radiation Treatment in Virginia

RT after the shot was not of concern to either me or my oncologist/radiation doctor. I did it to buy time. It also allowed me to regain much more use of my hand. It is a painful shot but was worth it. I would not delay in beginning RT, I would rather start with RT than wait and then have to have NA.

I bet hand surgeon's would be singing a different song about RT if they developed DD. I am amazed at how they can give advice as to how it affects or doesn't affect your life without having this disease. You never realize how much you use your hand until you can't do everything you once could. I was having a hard time drying my hair with a round brush until I had RT. I figured I would have to get really short hair if I could not dry it without making a mess. It is small things like that, that make me eternally grateful for this site.

Any questions feel free to contact me.

Lori

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