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!

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

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.

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.

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!