| RT or nothing? |
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02/16/2010 01:50
PAG 
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02/16/2010 01:50
PAG
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RT or nothing?
I saw Dr.Tripuraneni for a consult & will see him again tomorrow for planning session for RT. Very pleasant man but I'll have more questions.
I'm seeking other help: PT, acupuncture, dietary and behavioral. I'm afraid to put off RT and at the same time fear any more radiation. I don't like to think I'm setting myself up for cancer at 80 (I'm 60 now.)
Did you who've had RT decide early on that there was no other choice?
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02/16/2010 03:38
cindy850 
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02/16/2010 03:38
cindy850
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Re: RT or nothing?
I know just how you feel. I just seen my doctor last week for rt and i have a appointment next week to set my hands up with the machine and then set my rt up for 2 weeks of treatment. And i am very unsure about all this because i wondered about the cancer part myself. Have you had rt before? I would like to hear what your doctor is telling you compared to mine. My doctor is a very nice person and was going to give me 10 days of treatments and said i would get along fine. This sounds like it could work for our hands but i wish there was something else out there without cancer risk. I have had dd for 7 months and no contractions and i do not want to do surgery and had thought about na at the time one of my fingers contracted. And then i decided to go ahead with this but for some reason i am dragging my feet. I am 56 so i'm thinking the same things you are. Take care
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02/16/2010 03:42
flojo
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02/16/2010 03:42
flojo
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Re: RT or nothing?
I have found nothing so far except RT that will slow or stop Dupuytren's progression. The cancer risk is very small and it is only in the area radiated. The obvious progression that I was having was worth the risk to me. It has so far definitely stopped progression, reduced nodules, increased span across my palm and improved grip. I think there will be something in the future with gene therapy, but it seems to me that it will be years before that's developed.
If my other hand shows active Dupuytren's, I will definitely get RT.
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02/16/2010 03:43
LubaM.
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02/16/2010 03:43
LubaM.
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Re: RT or nothing?
In my case, it was not a matter of not having another choice...it was a decision made because I didn't want to risk waiting for a contracture to happen.
My right hand pinkie has a severe contracture in PIP joint. I had NA on it 3 yrs. ago and the contracture came back....I am having the NA re-done on the same finger/joint....
When my left hand developed multiple nodules on palm, and after reading many positive posts on this forum and doing my own research about RT ....I decided it would be worth giving RT a try for the left hand, before a contracture happens.
I had RT on my left hand last November with Dr. Tripuraneni, so far...very satisfied with results.... I am 67 yrs. old, so I figure the possible risks in 20 yrs. are worthwhile taking.
I will do everything I can (RT first, then NA if needed) to avoid surgery and I'm not convinced about Xiaflex yet...I believe NA has better results, more statistics, with less side effects.
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02/16/2010 16:39
lori
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02/16/2010 16:39
lori
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Re: RT or nothing?
I agree with Luba and Flora. I was diagnosed with DD at age 53 and am 54 now. The research supported the low risk of cancer and that is what made up my mind about RT. If I get more nodules I wll do RT again. My husband and I are both in the health care profession and we extensively researched RT and possible side effects and felt the benefits of RT far outweighed the risk associated with RT. I am also leary about Xiaflex until more research is available.
My hand is great and you can see before and after pictures if you look at the posting "from MRI to now".
Lori
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02/16/2010 16:43
cindy850
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02/16/2010 16:43
cindy850
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Re: RT or nothing?
It sounds like that all of you don't regret doing this AT ALL. Reading and reading on here and everywhere else i feel like i am making the right decision on this and so i am going to go ahead with my rt. Maybe one day they might be able to cure this. HA! HA! And i certainly don't want contractions but i'm just nervous. Oh well i would like my hands back so i'm going to do it. Wish me luck and if there is anything you can tell me i would love to hear it. I really haven't read on here that anyone regrets doing rt or they just haven't said anything. Take care
Edited 02/16/10 18:45
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02/16/2010 17:03
lori
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02/16/2010 17:03
lori
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Re: RT or nothing?
I don't regret it but I understand you being nervous. I remember leaning my head on the RT machine and saying a short prayer and saying here we go. I had gone back and forth in my mind, should I wait and see if it gets worse or treat it now. Mine was aggressive it seemed compared to others on this forum, and I did not want to deal with contracture. Therefore I opted for RT sooner rather than risk my cord beginning to contract.
I do not think there is a right or wrong decision. It is what is the most comfortable for you. I looked at all the options: Xiaflex was not an option because it was not FDA approved and my nodule and cord were growing and I could not wait to see if it would be approved. I did not have contracture so NA and surgery were out. My only options were wait and see and RT. I was already having problems holding onto things, pain, puckering, dimpling and it was not going to get better, it would only stay the same or get worse. So I chose RT and have never once regretted it. I got my hand and almost all of its use back. Hang in there, I know how you feel. You can email me on the outside if you have any questions or just want support. I know I emailed Flora and others for emotional support.
Lori
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02/16/2010 19:39
moondanc
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02/16/2010 19:39
moondanc
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Re: RT or nothing?
Quote:
It sounds like that all of you don't regret doing this AT ALL.
Cindy-- Please don't be nervous--it sounds like the best thing for you at this point. I'm 67 and my radiation oncologist who did my RT said there was only a 1-2% chance of cancer--only in the hand treated--in 20 years or more. I have a case that has turned very aggressive. I've had NA 4 times already-- 3 times on my right hand and once on my left. I also was in the Xiaflex trials and had that also on my right hand-- it lasted less than a year and there are side effects--I'd not do it again until it's fully vetted. So--even though my case was advanced it was still progressing and I chose to have RT in hopes of stopping the progression--not on the cords but on the nodules. Xiaflex does not deal with the puckering, dimpling, skin-tethering or nodules. RT is your best shot and it's better that you're in the early stages.
Another thing that I haven't seen mentioned are the radiation effects of a CT scan sometimes used prior to RT to determine proper depth--that in itself increases one's risk of cancer. They don't really know how much because it varies by machine and there's not been enough resarch but see the quotes below about CT and cancer risk.
"The radiation dose from a CT scan is far larger than that of a conventional x-ray because it typically involves 64 “slices” of radiation exposure, compared to one or two views of a standard x-ray. The American Heart Association, not known for warning the public about the negative aspects of medical care, acknowledged recently that the amount of radiation from a heart scan is equivalent to 600 chest x-rays." AND "Each scan creates an additional lifetime risk of cancer that is somewhere between 1 in 200 and 1 in 5,000, according to Dr. Brenner. Unfortunately, consumers who try to get information about radiation exposure from their doctors are unlikely to get an accurate answer"
quotes from: http://medicalconsumers.org/2009/05/18/c...ittle-research/
My radiologist did NOT feel an MRI nor a CT scan was necessary--as some of the other poster's doctors do. I researched and research and finally convinced him to do one but then I had second thoughts. I discussed it with a prominent NA surgeon who didn't think it necessary and who said he actually had a patient who was a radiologist who also did not think MRIs or CT scans necessary prior to RT.
The best of luck to you and if you need it in the future, do NOT hesitate to get NA.
Diane
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02/16/2010 19:56
lori
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02/16/2010 19:56
lori
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Re: RT or nothing?
Great post Diane. Good information.
Lori
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02/17/2010 03:17
flojo
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02/17/2010 03:17
flojo
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Re: RT or nothing?
Cindy,
All I can do is say again that I don't not regret at all getting RT. The results were more than I ever expected. As far as I was concerned, I had no choice other than watch my hand curl up, finger by finger, with my palm full of nodules. The grip in my hand was already so weak that I couldn't open a bottle of water.
That being said, I was nervous and wondered if it was the right thing to do. Fortunately, after having it, I know it was the right thing to do for me.
We'll be here for support.
Flora
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