| Radiation Therapy advice needed |
|
|
1 2 3
|
| 1 2 3
|
|
02/01/2012 23:43
JesseS 
|
02/01/2012 23:43
JesseS
|
Radiation Therapy advice needed
I am 27 years old and have been diagnosed with Dupuytren's disease in ring finger of my right hand. I first noticed a nodule in November and today in January it has grown approximately 50% bigger, so far I still have no contracture and am able to put my hand flat on a table top. I have attached two pictures of my right hand from two nights ago.
In the past week I have had both my primary physician and a hand specialist confirm that I have Duputren's disease. Neither was aware of radiation treatment but I have done a lot of research online and I feel that it is imperative to get radiation treatment now while my Dupuytrens is still in n-stage.
I have just graduated from my university to become a computer programmer and this disease terrifies me. I do not know of anyone advertising this treatment where I live, but I was wondering if it is a procedure that any radiation oncologist could perform if they were willing or is it necessary for me to travel to a clinic which specializes in this treatment?
I have read others on this forum who say they have approached radiation oncologists local to their area about performing the treatment and were successful in eliciting their help.
Can anyone offer any advice or share some wisdom from their own personal experiences?
I am also concerned because I do not really know how long I until my finger begins contracting.
Best,
JesseS
|
|
|
|
|
02/01/2012 23:55
Larry 
|
02/01/2012 23:55
Larry
|
Re: Radiation Therapy advice needed
It seems to be at an early stage but progressing ...
You need to get an experienced radiation therapist who is able to do the proper palpation as the initial assessment is the guidance for an appropriate dose to ALL involved and progressing signs .
I had very good experience with radiation therapy myself. Best regards, larry
|
|
|
|
|
02/02/2012 03:08
GaryBall 
|
02/02/2012 03:08
GaryBall
|
Re: Radiation Therapy advice needed
Hi Jesse,....
I m sorry to hear of your situation and the anguish it is causing you......most of us will relate to your fears.....the up side for you is that it appears you have early diagnosis....that is sooooo important.........my personal experience is that you can go around the medical fraternity like you are on a hamster wheel.......and the clock is ticking......
My advice .......contact prof seegenschmeidt mhs@szhh.info. It is Germany......like me...... You may think it is madness.........but he knows his way around this.......and it is all pretty easy once you make a decision...
The difficulty I had with trying to get local oncologist to deal with this condition is their lack of knowledge of the condition.......I have seen cases where this has seemingly created bigger problems.......
There are many testimonials on this forum on RT in Germany.......check them out.......
I wish you the very best....
Gazza
I am 27 years old and have been diagnosed with Dupuytren's disease in ring finger of my right hand. I first noticed a nodule in November and today in January it has grown approximately 50% bigger, so far I still have no contracture and am able to put my hand flat on a table top. I have attached two pictures of my right hand from two nights ago.
In the past week I have had both my primary physician and a hand specialist confirm that I have Duputren's disease. Neither was aware of radiation treatment but I have done a lot of research online and I feel that it is imperative to get radiation treatment now while my Dupuytrens is still in n-stage.
I have just graduated from my university to become a computer programmer and this disease terrifies me. I do not know of anyone advertising this treatment where I live, but I was wondering if it is a procedure that any radiation oncologist could perform if they were willing or is it necessary for me to travel to a clinic which specializes in this treatment?
I have read others on this forum who say they have approached radiation oncologists local to their area about performing the treatment and were successful in eliciting their help.
Can anyone offer any advice or share some wisdom from their own personal experiences?
I am also concerned because I do not really know how long I until my finger begins contracting.
Best,
JesseS
Edited 02/03/12 21:39
|
|
|
|
|
02/02/2012 20:15
fitfeet 
|
02/02/2012 20:15
fitfeet
|
Re: Radiation Therapy advice needed
Hi JesseS
About a year ago I was in exactly the same position as you. I live in France and went to see my doctor, I was shocked by the proposed way forward, including surgery and skin grafts. By hunting around I stumbled upon this wonderful resource.
I decided to move rapidly as I had (have) no contraction, but obviously nodules that were developing. I decided after looking into the various treatments available to go with radiation therapy. I asked my doctor if she could recommend such a service in France, she told me she had never heard of such treatment and did a quick check and told me that it was not really available in France. I decided at that point to go to Germany (Hamburg). I made the decision because I could see that I would be spending valuable time chasing my tail, going nowhere, but putting my hand at further risk. From France it may be surprising, but it was actually logistically difficult to get to Hamburg, and travelling there very, very expensive.
On the first visit I flew to the UK and then to Hamburg from the UK. On the second occasion I took my family with me and drove across France, through to Germany and up to Hamburg.
The clinic run by Prof. Seegenschmiedt was great, the staff excellent. I was unsure about the treatment, after the first sessions I was still unsure. However after the second sessions of treatment it was much more obvious that I had made a very good decision. One year on from my initial unpleasant discovery I have no contraction, I am very happy that a made a wise decision - at the right time.
Apart from the obvious benefits, there are other great reasons for going to Hamburg, its a great city, you get to take a holiday at the same time and see a different culture. The people were great, lots to see and do, public transport beyond anything I have ever experienced. And German breakfasts are lovely!
I hope by relating my experience to you it may give you some food for thought. Whatever you do decide to do, good luck, I know from my experience it is a very worrying time, but once you have made a decision and set course things will become a little easier.
By the way, directly after having the second treatment whilst returning to France I fell in a garden and broke my lower leg and tore a ligament in my foot........it was damned painful  and certainly took my mind off the worries of my hand!
|
|
|
|
|
02/02/2012 20:39
lori
|
02/02/2012 20:39
lori
|
Re: Radiation Therapy advice needed
Jesse,
My nodule started similar to yours. I had a sore spot in November, a nodule by January, which proceeded to a cord within a few months. It all happened within a 6 month period. Where are you located? Look under treatment and under RT and see if there is a clinic near you. I found my radiation/onclogist by literally calling every oncologist in Charlotte. Find out from the oncologist who does radiation in your area. If they treat keyloids, then they should be able to help you. I was lucky when I asked the office personnel if they treated DD. They said they did not know but would ask all the radiation oncologists. One of them called me back and had treated DD before and knew the German protocol to treat. He had not treated very many, but I figured if he treats serious cancer then he should be able to treat my hand. He did, and I have been in remission for over 2 years. Going to Grrmany to see Dr. S. is probably the best way to go, but not always possible. Let us know where you are located and someone might have been treated from that area.
Lori
|
|
|
|
|
02/02/2012 21:01
txmike 
|
02/02/2012 21:01
txmike
|
Re: Radiation Therapy advice needed
Hi Jesse,
Mark down another vote for Prof. Seegenschmiedt. Having just returned from Hamburg last weekend I do not know the results yet, but I am Very happy with my decision to have RT in Germany. Prof. Seegenschmiedt is very experienced and well versed in this disease and at your age that is what you need. If it is feasable for you to travel to Hamburg you will be doing yourself a big favor. BTW: I am 46 year old male from US.
Best of luck to you!
Michael
|
|
|
|
|
02/02/2012 21:28
cureall
|
02/02/2012 21:28
cureall
|
Re: Radiation Therapy advice needed
my experience with VAnderbilt Hospital in Nashville: I went in for my appointment amongst many other patients seeking cancer treatment. I waited and waited and finally a nurse came to me and said sorry for the delay and I said how long and she said I don't know and at that point I just walked out. I just don't see how a traditional oncology unit is going to have the time or the know-how to do a dupuytrens patient. They are so busy seeing really sick people! So this weighs me more toward going to Germany which I hate to do...too...
cureall
|
|
|
|
|
02/02/2012 21:37
flojo
|
02/02/2012 21:37
flojo
|
Re: Radiation Therapy advice needed
I agree with Lori. If you can't get to Germany, look on this website. I had RT done at Scripps in San Diego. It was not exactly the same protocol, but it worked for me. No new nodules in the irradiated area after 2 1/2 years. I couldn't be happier.
You may have some time. It was 6 months before I set up my RT. I had a little contracture that had developed across my palm and had that released by NA first. 4 months later I had RT because I couldn't fit it in with my personal schedule. Altogether, it was about 8-9 months from first being diagnosed to having RT. In a way, that little delay allowed evidence that there were nodules developing over my whole palm so it made sense to do a much broader area than it first appeared. RT is effective on active Dupuytren's nodules, so it needs to be active. It may possibly stop progressing, too.
My other hand started nodules in my forefinger almost a year ago. It feel a little tighter but no contracture started and the progress in MUCH slower than in my right hand. I'm watching it and have consulted with a radiologist at Loma Linda University Medical Center about it. I plan to go to him for RT if my left hand becomes clearly active Dupuytren's, but I'm just watching it at this point.
For me, active means itchy, crawly feeling in my palm, weakened grip, achy especially at night, and nodules continuing to appear and develop.
|
|
|
|
|
02/03/2012 00:12
artset
|
02/03/2012 00:12
artset
|
Re: Radiation Therapy advice needed
I live in central FL. I have this affliction in my left hand and both feet. We are lucky to have an excellent hand specialist locally, Dr Carlos Woodward of Melbourne, FL. I had a consult with him. He was not interested in any surgical options for my hand because of the early stage of the disease. He did say that I appeared to have a relatively aggressive form of the disease because I have a growth on the web of my hand in addition to the classic ring and pinkie finger.
He was aware of radiation as an early treatment when I mentioned it and referred me to Dr Nanialei Golden of MIMA in Melbourne, FL. I am quite impressed so far. Although she does not typically treat Dupuytrens, she was knowledgeable and has a treatment plan for my hand. It will commence on Feb 13. She did not think I should pursue treatment on my feet. Her thought was that my feet were not functionally affected.
One of the nurses thought Dr. Golden would be pleased to treat me. I think that it must be refreshing to have a patient who is not facing a life threatening cancer. I mention this because you might find someone in your locale that would have a similar attitude. Her staff is pursuing the insurance compensation for me.
I am a textbook example of the disease. 58 years old, classic symptoms and progression. You, though, are quite young relative to the norm. You may encounter some resistance because of the fear of radiation exposure related cancers that can take 20 years to appear. When I was 27, I did not think about being 47, so a doctor's hesitation might seem overblown to you. Radiation therapy is very conservatively applied in the USA compared to Europe. It could be so because of the constant fear of lawsuits. I hope it works out for you.
I will update as is appropriate. Thanks to you all for sharing. I would not have known how to pursue a treatment without your help.
Edited 02/03/12 02:29
|
|
|
|
|
02/03/2012 09:40
Anthony
|
02/03/2012 09:40
Anthony
|
Re: Radiation Therapy advice needed
Hi Jessie
It is soooo difficult to make an informed decision on whether RT will have a long term effect relating to cancer (particularly in relation to treatment on younger patients). There just doesn't seem to be a huge range of research available that looks at the long term affects. Dr S in Hamburg doesn't seem to have had many (or any) problems but I think his follow ups only go back 13 years, so there is nothing conclusive long term.
I have read that it increases your chances of getting cancer only marginally (almost not measurable), yet the two surgeons I spoke too STRONGLY recommended not to get RT because of its mutating affect on cells - and therefore the possibility of cancer-, as well as possible complications with further surgery (although neither had experience on hands after RT one said operating on upper limb and necks after RT had proven more difficult for him).
Other forum members have said that surgeons in Europe (where RT is used much more extensively on DD) do not report significant problems with 'salvage surgery'.
Some forum member also mentioned that if cancer did appear it would have to be restricted to the hand area. Without any medical experience I would like to believe that, but I can't help thinking that if cells were mutated and possibly cancerous (or pre-cancerous), and then that area had surgery performed on it then wouldn't it be logical to assume that those affected cells would migrate to other parts of the body or lymph system through the blood.
These are only thoughts that I am currently struggling with and probably have no medical credence.
Ironically I am booked in to see Dr S in Hamburg in two weeks for RT but I cannot make myself pay for the flights as my mind constantly switches from go to don't go.(it seems every 10 minutes)
With youth on your side you would think there will be a number of significant developments to help you control this disease so you have good reason to be optimistic. As you are doing, stay informed and don't let one opinion (either medical or friend) control your decisions.
One thing is for sure. You will find valuable information and support through this website and forum. There are many experienced and knowledgeable patients worth communicating with.( and a few like me that probably just add to the confusion)
All the best
AB
|
|
|
|
|
|
1 2 3
|
| 1 2 3
|
167 users online
Login
