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Newly Diagnosed in Dallas, TX area....... Radiation Therapy?
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11/18/2010 17:52
Bleu 
11/18/2010 17:52
Bleu 
Newly Diagnosed in Dallas, TX area....... Radiation Therapy?

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.

11/18/2010 23:00
Larry 
11/18/2010 23:00
Larry 
Re: Newly Diagnosed in Dallas, TX area....... Radiation Therapy?

Bleu:
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.

Sorry to hear this story! You need a photograph of your foot sole, you need the path report (whether its Ledderhose or
fibromatosis or similar ...) and you need a specialist in examining both your hands and feet - only doctor's experience will
tell you what you might have. Unfortunately only a few doctors are able to examine both, hand and feet and draw the right conclusions for you - Usually doctors in Europe or Germany know what to examine and accept Radiotherapy as a possible Treatment !! Best regards, Larry

Edited 11/19/10 01:01

11/19/2010 14:32
Sentinella 
11/19/2010 14:32
Sentinella 
Re: Newly Diagnosed in Dallas, TX area....... Radiation Therapy?

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.

11/19/2010 16:39
Bleu 
11/19/2010 16:39
Bleu 
Re: Newly Diagnosed in Dallas, TX area....... Radiation Therapy?

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.

11/20/2010 04:03
Larry 
11/20/2010 04:03
Larry 
Radiation Therapy? - Long-Term Experience Counts most ... and costs !

Bleu:
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.

I just wrote my comments in another thread ....

Its long year experiences and absolute professional work on this topic which makes the Germans superior
to any of the USA doctors who have nothing ever published (even not the University centers ...)



That's my clue: make vacation in Germany !

You are definitively cheaper and more interesting
(air fare 2 x 900 USD; Hotel 2 weeks 2 x 1000 USD;
Ledderhose 2 feet / 2 rounds of treatment from the PROFESSOR in Hamburg 2.400 USD)

Very reasonable ?? I think its a great deal ... :-) Larry

11/20/2010 21:30
flojo 
11/20/2010 21:30
flojo 
Re: Newly Diagnosed in Dallas, TX area....... Radiation Therapy?

I had RT done for Dupuytren's in my hand with Dr. T, Scripps La Jolla/San Diego. I don't have Ledderhose's . . . YET!. Dr. T is very knowledgeable about these diseases - Dupuytren's and Ledderhose's and has done radiation on others for both. Search Luba's posts. He did radiation on her Ledderhose's and Dupuytren's.

You are doing your research and you came to the right site for support and information.
Good luck! We're all members of the same club and none of us even want to be members!

Flora

11/21/2010 02:40
Bleu 
11/21/2010 02:40
Bleu 
Re: Newly Diagnosed in Dallas, TX area....... Radiation Therapy?

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

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