Hi Everyone,

I had surgery on my foot at the end of September to remove a nodule. The path report was sent out and showed the abnormal cells were still in there so I had a second surgery a few weeks later. A dermatologist/surgeon did this. I have been healing since then. It was left as an open wound. I have been non-weight bearing now for almost 2 months. I have two small children and it has been quite a challenge.

Well, I just noticed what appears to me to be a new nodule right above the wound. My doctor said he would refer me to a foot specialist or an oncologist to possibly do radiation therapy if I were to recur or happen again. Is my story similar to anyone's out there?

Does anyone know anyone in the Dallas area that has experience w/ Ledderhose and/or RT? Would it be ok to go to a radiation oncologist who has not had experience in this? Is it a standard procedure or do I need an expert in LD? (I know that sounds like a dumb question, but I don't want to travel for a week and leave my kids).

I am very discouraged to see this new nodule and hoping to find some answers. I stepped on a nail prior to this growing, could that have caused it or is it mostly heredity?

Thanks!! I appreciate any feedback you all may have to offer.

Bleu,
Good luck finding a Dr. in the states that understands this disease and the right treatment. Obviously the 1st thing they want to do is Cut Cut Cut, and mess you up. There are others on this list that have had radiation after surgery. If I were in your shoes I would walk or crawl into a cancer care clinic and talk to the radiologist "one on one", ask him/her if she will research into doing radiation on the arch of your foot for Ledderhose. Go from clinic to clinic until you find a Radiologist that will work with you. Have him/her call Dr. Kline for his opinion. The fact that another nodule POPPED up so soon after surgery sounds very normal for this disease. I am so against surgeries I wouldn't even consider it for mine when the Foot Dr. I talked to recommended it.

Bleu:

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Thanks for your responses. I am a bit frightened of losing my mobility and the unknowns of LD. What is the worst that can happen? Can you lse your mobility, is it very painful as it progresses? What should I expect?

For those that have sought treatment outside the US, why is that? Surely some of the RT places/doctors listed on this site in the US are qualified?? Anyone have a bad experience with any of the clinics listed? I am closest to OK City, anyone have positive or negative feedback? Who is the best doctor in America re: LD? Who is Dr. Kline?

I have an appt. Monday with my surgeon to take a look at the second nodule that just popped up. I will do research and go from there.

Any helpful info anyone can provide about facilities for RT or doctors would be much appreciated, or any other helpful information.

Thank you!

Hope all of you are well.

Thank you everyone. I will post more after I talk to my oncologist (melanoma history) and the surgeon who took my LD nodule off, after he looks at the new one. I fully realize I will be my own best advocate on this as it seems there are not a lot of professionals experienced with this disease.

I still am not quite understanding what can happen. Does it get extremely painful? Is there a loss of mobility? Is it just uncomfortable to walk? That's how it was for me with my nodule.. uncomfortable to walk. It was big and right now I have a huge, open wound (hole) in my foot right now from surgery and I can't walk at all.

I'm43 year old mom of a 4 and 6 year old. Hard to take care of them when you can't walk :) You should have seen how pathetic I was the two times I fell over and my knee scooter landed on me gotta make the best of it when you can!

I appreciate the responses!

Jane

Edited 11/21/10 04:42