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Looks like I might get RT.. maybe in Dallas
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11/23/2010 00:39
Bleu 
11/23/2010 00:39
Bleu 
Looks like I might get RT.. maybe in Dallas

Hi Everyone!

I had appt.'s today with my oncologist and surgeon who removed my large nodule. They both think RT is the way to go now that I have a new nodule and am still recovering from the surgery.

My oncologist gave me a referral but when I called, he has no experience with RT for LD. My onc. is not the primary doctor for this, I just asked his thoughts So my surgeon at the appt. later in the day told me that his guy does have experience, although admittedly he said it wasn't much. I have a call in to him as well.

I left a message for the doctor at U of OK, who is listed on this site, just to get some info so we will see what happens. Pending insurance approval and gaining some more info about the entire process, I am encouraged that this might happen.

Just thought I'd keep you updated, not sure too many other people understand. Thanks for the ear!

-Jane

11/23/2010 10:39
Larry 
11/23/2010 10:39
Larry 
Look for an experienced RT doctor & Clinic

Dear Bleu

As You are not in avery favourable position with surgery, bad healing and relapse nodules I would strongly
recommend to contact an expert in radiotherapy and nor someone with "little information" and "a few cases".

To my knowledge and with my background I strongly believe that you need someone who has already treated
patients after surgery ... you may eventually worsen your situation with radiation ! You do not want this happen ...

AS far as I understood another FORUM member OKLAHOMA uses a very inensive RT schedule, something like
7 treatments in 5 workin days and sun-burn like side-effects were observed !

I myself had treatment with Prof. Seegenschmiedt - formerly Chief Radiation Oncologist in Essen - nowadays in
Hamburg (Germany) who has been the first in the world to treat and publish data on RT for Morbus Ledderhose ...
He uses 5 x 3 Gy (5 days in 1 week), a break of 3 months, and then gives another 5 x 3 Gy (5 days in 1 week)
I had previous surgery on my foot with realpse; with RT I had no ACUTE SIDE EFFECTS nor had I any CHRONIC
SIDE EFFECTS like dryness of skin etc. The mostv recent publication (abstract) from the German group is rearly
encouraging news for us

So please be careful with all the "experience" offered to you in the United States, as most of the doctors have just
started to treat since 1 or 2 years: I would also like to know the charges which they claim for the planned treatment.

Keep us informed about your situation, good luck in advance , and best regards , Larry

11/23/2010 13:52
Bleu 
11/23/2010 13:52
Bleu 
Re: Looks like I might get RT.. maybe in Dallas

Who, in America, is considered the best radiation doctor for LD?

I just talked to the nurse and she said they have never treated LD after all. It sounds like they are willing to do so as they have treated other benign tumors/fibromas. However, before I will decide I will go in for a consult, bring the abstract from the German doctor and ask if he would treat it similarly.

Any thoughts on this? Too risky to let an inexperienced doctor treat it? Help. I want to get this treated quickly as my first nodule grew so fast and so large! I am just in the beginning phases with this one.



Thanks!

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