| Lost password
62 users onlineYou are not loggend in.  Login
Help me inexperienced Dr!!!!!!!!!!!!!!!!
 1
 1
08/09/2014 04:20
elPepin 
08/09/2014 04:20
elPepin 
Help me inexperienced Dr!!!!!!!!!!!!!!!!

Hello,
I live in Puerto Rico unluckily for me RT is unheard of here. However I looked everywhere and found a Dr that is willing to do it. He seemed familiar with the disease and the benefits of RT and he seemed eager to learn about it etc. Now as you can imagine I've done my homework and in a very subtle way I've been testing him - for example I said the him that it seems that radiation was done including a portion of the fingers, and he showed me "yes to about here", which was consistent with what I've seen.
I've learned that the most important factor is the coverage of the zone for radiation, I've looked at dozens of pictures. Before he schedule the CT he said that he was going to check more in depth the info for any new developments. Right after the CT was done to my horror when I saw the area to be radiated it looked NOTHING to what I've seen, he excluded all of the fingers and half of my pulled skin above the nodule (see attachment) He even scheduled the first session of RT. Now I am extremely insecure of weather or not to go ahead with this (it's been in the planning for over a year).
I don't want to offend him and have him drop me as a patient and then me being stuck untreated. I don't have the resources to go to Germany or anywhere for that matter.
What are your suggestions, should I schedule another appointment before the initial treatment and simply be direct with him?
Is any RT is better than none at all?
Will it be a waste of time and a problem for the future?
Since he only included half my my streched skin in the radiation zone I need to know, does the streched skin is already diseased and forming cords that go up to my fingers (it seems like so)? My Dr. seems to think that it's like that because the nodule is pulling on it and it is in essense not diseased.

Please please please any suggestions on how to handle this will be appreciated!

This is a pic of my hand with what I remember is the planned zone.

Edited 08/12/14 07:32

08/09/2014 07:16
spanishbuddha 

Administrator

08/09/2014 07:16
spanishbuddha 

Administrator

Re: Help me innexperienced Dr!!!!!!!!!!!!!!!!

Welcome to our forum elPepin

In Germany the RT is normally done over an area that extends by approximately 1 cm past the area detected or diagnosed. There are some exceptions to this, the thumb may be excluded especially if there is no disease, and the DIP joints too.

Some RT in the area of disease should help, but those areas would have to be excluded for future treatment using RT, and any underlying disease outside the areas may continue to progress. It seems that perhaps your doctor is being cautious since he is new to this treatment, and radiation is a damaging therapy with risks.

You should discuss openly with your doctor your concerns. It's a mutual trust relationship built from both sides.

Best wishes

SB

08/09/2014 08:09
Lanod 
08/09/2014 08:09
Lanod 
Re: Help me innexperienced Dr!!!!!!!!!!!!!!!!

Probably the best paper for you and your doctor to read is the year 2012 paper on the Phase III Clinical trial by Prof. Seegenschmiedt. If you advise me of an email address I can sent you a copy of that paper.

The paper advises as follows regarding area to be treated "to treat the whole afflicted area of the palm including all palpable and visible nodes and cords with sufficient distal and proximal margins (1–2 cm) and lateral margins (1 cm).

Also - what is the planned treatment regime i.e. what daily dose (Gy) and for how many days etc. Best advce seems to be 5 days at 3 Gy per day and then a repeated 5 days after some 3 months.

08/09/2014 08:48
eventhorizon 
08/09/2014 08:48
eventhorizon 
Re: Help me innexperienced Dr!!!!!!!!!!!!!!!!

See my post in Other therapies section of the forum.

08/09/2014 11:03
elPepin 
08/09/2014 11:03
elPepin 
Re: Help me innexperienced Dr!!!!!!!!!!!!!!!!

Lanod:
Probably the best paper for you and your doctor to read is the year 2012 paper on the Phase III Clinical trial by Prof. Seegenschmiedt. If you advise me of an email address I can sent you a copy of that paper.

The paper advises as follows regarding area to be treated "to treat the whole afflicted area of the palm including all palpable and visible nodes and cords with sufficient distal and proximal margins (1–2 cm) and lateral margins (1 cm).

Also - what is the planned treatment regime i.e. what daily dose (Gy) and for how many days etc. Best advce seems to be 5 days at 3 Gy per day and then a repeated 5 days after some 3 months.
Of Course I would be so greatful if you did so I can forward it to him. my email is": suarez.jose@yahoo.com
I anxiously await Thank you so much , this seems to be the part where he needs help;

08/09/2014 11:16
elPepin 
08/09/2014 11:16
elPepin 
Re: Help me innexperienced Dr!!!!!!!!!!!!!!!!

I am also worried about the fact that he is just radiating half of my contracted skin as asuming that is a result of the nodule pulled back and not as the cells begining to change too. As far as I have understood that area need to be radiated as well because there were already turning into cords. Am I mistaken? but radiating only have of the streched skin seems really odd.
What do you guys think:
the streched skin has to be radiated in its entirety upto 1/3 of the finger? is this because cords are already forming inside?
And how about my wrist how far from the dimple throu my streched skin should the RT be applied?
I'm still really nervous.

08/09/2014 13:54
callie 
08/09/2014 13:54
callie 
Re: Help me innexperienced Dr!!!!!!!!!!!!!!!!

My entire palm was irradiated including nodules in the thumb area.

08/11/2014 11:13
EasyRhino 
08/11/2014 11:13
EasyRhino 
Re: Help me innexperienced Dr!!!!!!!!!!!!!!!!

My advise is this (it is, of course, worth what you paid for it).

If you are fearful of the treatments not being done in such a way that makes you comfortable, I would advise you to wait. You have time, IMO. Either get your questions answered to your satisfaction, or if unable to accomplish this, seek a second opinion (or both).

Good luck.

Kevin

 1
 1
appreciated   relationship   especially   developments   radiation   attachment   Seegenschmiedt   satisfaction   streched   sufficient   underlying   including   approximately   suggestions   excluded   inexperienced   appointment   innexperienced   comfortable   treatment