I appreciate all the information I've learned from this website and message board. A wonderful site and great help from others. I do have some questions below. If you can offer any insight on any of them it would be great. I'll number them to help with any responses.

1. What is the RT threshhold (Gy?) when the area probably can't be radiated a second time if there ever should be a need?
2. Is the RT doc essentially your only doctor if you elect to get RT? It is strange because I suppose they are limited in their knowledge of Dups and, in my case the two ASSH surgeons I've seen advised against RT and said to come back when the contracture is worse, so they are out of the picture for now.
3. I note many of the RT protocols provide 2 weeks (2x5 days) of treatment. How do they determine the exact area to radiate? Is there a CT scan and is this done as part of the first day or would that be a separate visit. In my case I will have to travel a good distance for RT treatment so it makes a difference.
4. One of the hand surgeons prescribed me a lecithin gel (Pluronic Lecithin Organogel) which appears to be some sort of scar compound. I assume this is worthless although I have been applying for one hour daily.
5. Do most of the folks who get RT have the "diffuse/diathesis" version of Dups, in other words more aggressive, multiple nodules, etc?
6. My problems just started a month ago. The first 3 weeks I had a burning in my palms and soles of my feet. My hand Dr. termed it a flare reaction. Not so much painful but bothersome. That has now calmed down considerably. Also my two large nodules aren't quite so tender now. I don't see/feel any lumps on my feet so far but with the clear "burning" going on down there I wonder if they will have problems. Would they typically also scan the feet to see if there are small nodules that can't be felt at this time? I would hate to have them pop up a couple of months after I travel for RT.
7. Just wondering if the RT penetrates the bones in the hand? Not sure how that works.

David26:

---

I appreciate all the information I've learned from this website and message board. A wonderful site and great help from others. I do have some questions below. If you can offer any insight on any of them it would be great. I'll number them to help with any responses.

1. What is the RT threshhold (Gy?) when the area probably can't be radiated a second time if there ever should be a need?
2. Is the RT doc essentially your only doctor if you elect to get RT? It is strange because I suppose they are limited in their knowledge of Dups and, in my case the two ASSH surgeons I've seen advised against RT and said to come back when the contracture is worse, so they are out of the picture for now.
3. I note many of the RT protocols provide 2 weeks (2x5 days) of treatment. How do they determine the exact area to radiate? Is there a CT scan and is this done as part of the first day or would that be a separate visit. In my case I will have to travel a good distance for RT treatment so it makes a difference.
5. Do most of the folks who get RT have the "diffuse/diathesis" version of Dups, in other words more aggressive, multiple nodules, etc?
6. . Would they typically also scan the feet to see if there are small nodules that can't be felt at this time? I would hate to have them pop up a couple of months after I travel for RT.

Hi Australia Calling, I'v had Low dose RT for both my hands and feet. EDUCATION is the problem. What is needed is a broadening during the training of medicos. Most surgeons do not have have much to do with Oncology. Most of society has a general idea that RT is used to treat cancer and have no knowledge of the other use to treat Non Malignant Disease. There needs to be education from the Oncologists to the Surgeons. This is probably unlikely once they are out in their field of Surgery.
For interest sake in Germany they treat many thousands of patients annually covering up to 29 different Non Malignant Diseases with low dose RT. Regards

Edited 05/02/10 01:04

David,
Flojo made good suggestions...if you are able to arrange for a mapping appt. just before the treatment at Scripps, I can suggest a very good hotel, right on the ocean in Del Mar, CA (only 4 miles from Scripps) that offers special rates for Scripps patients. In Nov. I only paid $69 a night (with breakfast). The other possibility would be to have the mapping appt. on a Friday and start treatment on Monday after the weekend. You would be only 20-25 min. from San Diego, fun place to be on the weekend.

Hope this helps,
Luba

Edited 05/02/10 20:35

Dr. T at Scripps will do the mapping on a Monday morning and start RT that afternoon, at least for out of state patients. However, you will require a separate appointment for the inital consultation. Any insurance has to be approved betwen the initial consultation and the mapping appointment.