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Radiation after surgery ** Questions.
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11/30/2010 21:50
Bleu 
11/30/2010 21:50
Bleu 
Radiation after surgery ** Questions.

Hi All!

Hope everyone is doing well. I met with a local radiation onc. who said he would treat my foot. However, I do not feel completely comfortable with this as he wants to biopsy my nodule. I am not getting cut again. I am just recovering 2 months out from a huge nodule that was surgically removed. Also, he wants to treat at a low dose 5 days/week for 5 weeks. Has anyone heard of this? He said he would treat it this way due to my open wound (from surgery). My surgeon nixed the idea of having radiation done on an open wound, thank goodness.

Questions:

* What complications arise after surgery with Ledderhose in general? I do have a new nodule, but that could have popped up anyway, correct?

* Has anyone had RT after foot surgery? If so, how did it go? (Any special concerns that arise due to surgery?)

* For anyone treated in OK, can you provide me with any feedback? (I have read some positive things already from posters).

I have contacted U of OK. They advised they would not cut again to treat, that they could treat with a derm/foot specialist dx and could tell by looking at it. So, I am waiting for a call back from my surgeon to talk to him about possibly referring me to OK.

Thanks!

12/01/2010 19:37
MolotoW

not registered

12/01/2010 19:37
MolotoW

not registered

Re: Radiation after surgery ** Questions.

Bleu:
Hi All!

Hope everyone is doing well. I met with a local radiation onc. who said he would treat my foot. However, I do not feel completely comfortable with this as he wants to biopsy my nodule. I am not getting cut again. I am just recovering 2 months out from a huge nodule that was surgically removed. Also, he wants to treat at a low dose 5 days/week for 5 weeks. Has anyone heard of this? He said he would treat it this way due to my open wound (from surgery). My surgeon nixed the idea of having radiation done on an open wound, thank goodness.

Questions:

* What complications arise after surgery with Ledderhose in general? I do have a new nodule, but that could have popped up anyway, correct?

* Has anyone had RT after foot surgery? If so, how did it go? (Any special concerns that arise due to surgery?)

* For anyone treated in OK, can you provide me with any feedback? (I have read some positive things already from posters).

I have contacted U of OK. They advised they would not cut again to treat, that they could treat with a derm/foot specialist dx and could tell by looking at it. So, I am waiting for a call back from my surgeon to talk to him about possibly referring me to OK.

Thanks!


Let it heal even with recurrent and growing nodules until the wound has completely closed
and then receive radiotherapy ! I had the same done in Germany at Prof. Seegenschmiedt
in Essen - He is now in Hamburg! - just 3 years ago with 5 x 3Gy in 2 rounds 14 weeks apart.

My nodules have shrunk in size by over 50% and I have no symptoms now ! I would look for
an experienced doctor to have this radiation done. Let's hope there is one in OK !

Best regards, MolotoW
to

12/02/2010 01:46
Bleu 
12/02/2010 01:46
Bleu 
Re: Radiation after surgery ** also some interesting stats re: RT

Thank you for your reply! Sometimes I wonder if there is anyone out there reading these posts Really, I think it is there are just so few of us. It is a journey you take by yourself that is for sure. Figuring all this out is time consuming and frustrating as truly, there aren't many professionals up to speed on this disease so you educate yourself and hope you make the right decisions. The good news is, it isn't cancer! It sure is inconvenient though.

I talked to one of the doctors at U of OK today. They really are extremely helpful. I have decided to pursue treatment up there even though it means traveling. I first have to let my open wound heal which probably won't be until the end of January or so, so you gave some good advice MolotoW! Here is a follow up email response to one of my questions from the doctor in OK. I asked if they radiate only the nodule or the entire arch.. here is his response. Maybe it will help others out there in a similar situation as they educate themselves.

The entire sole/arch is radiated, we do not focus on the nodule only. That is why the other surgical site will be in the field and must heal first prior to treatment. I don't recall us treating anyone here who had had prior surgery, but it has been documented in the literature and the outcomes are the same. 70% get disease stabilization, 25% get nodule regression with time, and 20% still progress despite radiation. The disadvantage of prior surgery is the delay to radiation time.

Funny how life works out, I never thought I would be leaving the Dallas area to seek treatment in OK. Seems like they have a great staff and they told me they have been treating LD since 2008. I'll keep you updated in January or February when I have my RT.

Edited 12/02/10 03:55

12/02/2010 04:06
flojo 
12/02/2010 04:06
flojo 
Re: Radiation after surgery ** Questions.

You've researched and found a clinic that you are comfortable with. That's great!
I don't have Ledderhose's (Disclaimer: Not yet anyway), but had success with RT for Dupuytren's. Good luck.

12/02/2010 04:09
flojo 
12/02/2010 04:09
flojo 
Re: Radiation after surgery ** Questions.

Bleu,
One additional comment. When I was fixated about what to do, RT or NA or nothing, I couldn't find any answers either. Those who did make comments really helped me in my lonely journey in making my decision, so I try to let people know that someone is out there as they are in that "What should I do?" zone. Ultimately, I did NA then RT. It was a good decision for me.

12/02/2010 06:32
LubaM. 
12/02/2010 06:32
LubaM. 
Re: Radiation after surgery ** Questions.

Bleu:
I talked to one of the doctors at U of OK today. They really are extremely helpful. I have decided to pursue treatment up there even though it means traveling. I first have to let my open wound heal which probably won't be until the end of January or so, so you gave some good advice MolotoW! Here is a follow up email response to one of my questions from the doctor in OK. I asked if they radiate only the nodule or the entire arch.. here is his response. Maybe it will help others out there in a similar situation as they educate themselves.

The entire sole/arch is radiated, we do not focus on the nodule only. That is why the other surgical site will be in the field and must heal first prior to treatment. I don't recall us treating anyone here who had had prior surgery, but it has been documented in the literature and the outcomes are the same. 70% get disease stabilization, 25% get nodule regression with time, and 20% still progress despite radiation. The disadvantage of prior surgery is the delay to radiation time.

Your case might be different because you had surgery and they are doing radiation as a follow up. Maybe that is why they are radiating the entire sole?...

In my case, I had two marble size, hard nodules, on the sole of my left foot. In November 2009, I had radiation with Dr. Tripuraneni at Scripps Hospital in La Jolla, CA for my LD as well as my DD in my left hand. Dr. T. only radiated the area of the nodules. A year after the treatment, the nodules are very small in size and what remains is very soft. The constant itching is gone and I feel the progression of my LD has stopped, for now....

Good luck to you when you get your treatment next year...

Edited 12/02/10 08:33

12/02/2010 12:19
MolotoW

not registered

12/02/2010 12:19
MolotoW

not registered

Re: Radiation after surgery ** Questions.

Bleu:
Thank you for your reply! Sometimes I wonder if there is anyone out there reading these posts Really, I think it is there are just so few of us. It is a journey you take by yourself that is for sure. Figuring all this out is time consuming and frustrating as truly, there aren't many professionals up to speed on this disease so you educate yourself and hope you make the right decisions. The good news is, it isn't cancer! It sure is inconvenient though.

I talked to one of the doctors at U of OK today. They really are extremely helpful. I have decided to pursue treatment up there even though it means traveling. I first have to let my open wound heal which probably won't be until the end of January or so, so you gave some good advice MolotoW! Here is a follow up email response to one of my questions from the doctor in OK. I asked if they radiate only the nodule or the entire arch.. here is his response. Maybe it will help others out there in a similar situation as they educate themselves.

The entire sole/arch is radiated, we do not focus on the nodule only. That is why the other surgical site will be in the field and must heal first prior to treatment. I don't recall us treating anyone here who had had prior surgery, but it has been documented in the literature and the outcomes are the same. 70% get disease stabilization, 25% get nodule regression with time, and 20% still progress despite radiation. The disadvantage of prior surgery is the delay to radiation time.

Funny how life works out, I never thought I would be leaving the Dallas area to seek treatment in OK. Seems like they have a great staff and they told me they have been treating LD since 2008. I'll keep you updated in January or February when I have my RT.

Honestly Bleu

You should consider getting in touch with the German doctors; they are treating this disease for more the 10 years.
The most experienced with over 100 feet treated is Prof. Seegenschmiedt; I didn't get THE WHOLE FOOT SOLE irradiated
just the whole plantar fascia and even this area trimmed to the actual findings with safety margins...

Why not consider magnetic resonance imaging to actually see the amount of disease which had to be treated. Again,
some German groups use this to tailor their fields. But nothing beyond the PALPATORY SKILLS of an experienced doctor.

You can have effective treatment only ONCE, a second chance is difficult! I am happy that I made my decision to be
treated in Germany ...

it also seems much cheaper than in the US (8 - 12.000 USD; my total bill was only about 1.500 EURO, but in addition
with a nice holiday ...

Wish you good luck and better decisions, MolotoW

12/02/2010 22:03
spanishbuddha 

Administrator

12/02/2010 22:03
spanishbuddha 

Administrator

Re: Radiation after surgery ** Questions.

Bleu:
Thank you for your reply! Sometimes I wonder if there is anyone out there reading these posts Really, I think it is there are just so few of us. It is a journey you take by yourself that is for sure. Figuring all this out is time consuming and frustrating as truly, there aren't many professionals up to speed on this disease so you educate yourself and hope you make the right decisions. The good news is, it isn't cancer! It sure is inconvenient though.


Yup I'm a lurker (reader) and occasional poster. But you're ahead of me on the path.

...and yes it could be worse.

Best wishes and keep us (lurkers) informed on your progress.

12/03/2010 01:33
Bleu 
12/03/2010 01:33
Bleu 
Re: Radiation after surgery ** Questions.

Well I sure do appreciate all of your responses. Thank you. It also gives rise to me asking more questions of my doctors. That is why these forums are so helpful! Other peoples experience/stories are invaluable to us new in the game. I will post again when I find out more. Thank you everyone! I hope all of you are all doing well. Best!

12/09/2010 06:22
jery 
12/09/2010 06:22
jery 
Re: Radiation after surgery ** Questions.

I finished my radiation treatment a couple months ago. I did it over 5 weeks like you were told. I had 2 previous surgeries and then the radiation. They did shrink a little bit, however, a new lump formed oustide of the radiation area. You just never know with this disease. As far as the radiation treatment went. It was pretty easy. The only side effect I had was after the 3rd week and it got a bit sore and red. Then after I completed it it was like a sunburn. Dried out and peeled. Now it has healed well. I did have this done in Thailand so I am not sure of the doctors there, but I am sure you can get it done safely and effectively. Good luck

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