| Lost password
283 users onlineYou are not loggend in.  Login
Advice please re. RT for Dupuytrens, & the rest
 1 2 3 4 5 6
 1 2 3 4 5 6
01/30/18 09:18
scumble 
01/30/18 09:18
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

wach:
Nodules can be palpated, no need for MRI or CT, the latter including considerable radiation exposure.
Thank you, yes, I'm aware of that, but there is no-one to palpate them in a country like Korea, where I happen to be. That's why I refer to 'those regions' where such experts are not available, and radiologists rely instead on MRI or CT. My question therefore is why some should advocate MRI and some CT, given the enormous difference in cost to the patient. As for CT giving 'considerable exposure,' here too opinions are contradictory. A highly experienced oncologist here assures me that the exposure is negligible. If you could direct me to the evidence that contradicts him, I'd be very interested to read it.

01/30/18 09:39
scumble 
01/30/18 09:39
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
MRI seems popular in the US, perhaps due to the litigious society, and inexperience of Dr? I have heard of ultrasound being used on the feet to show the depth of fibromas.
Thanks Spanishbuddha - but I'm not in the US and I don't think the oncologist who recommended MRI did so for the same reasons. You see because I'm in Korea where the condition is rare I consulted two oncologists at two separate hospitals. One said he needed an MRI scan, so I went ahead and it cost me half a month's salary. I expected the other to say the same, but he turned out not to believe in MRI scans, only CT scans, with which he makes a computer simulation to appraise the depth and location of the affected tissue. I have to decide which one will perform the radiotherapy. They are both conversant with the protocol. But I've had the MRI now anyway. Tomorrow I'll see the first oncologist again and ask him why he recommended MRI when his colleague disdains it. For the cost I might have flown to Germany and had the nodules palpitated, but never mind. As I said this is a secondary issue and I don't expect you to have the answer; I just thought I would ask. In case it's of interest to anyone else with DD/LD who gets stranded in the Far East, I'll report what I find!

01/30/18 09:50
Stefan_K. 
01/30/18 09:50
Stefan_K. 

Re: Advice please re. RT for Dupuytrens, & the rest

Thanks for sharing. Once you have the location of the nodules which a doctor with little DD experience can perhaps not palpate with certainty, and you have decided it is the right time to get radiotherapy, the way I see it there is no need for further CT, MRI or modeling, especially at the kind of cost you mention. Afaik there is no adjustment made for depth in the protocol. The important thing is to define the area to be treated so that you don't miss a nodule by a couple of mm and then have to start over again when it grows.

Stef

[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH]

01/30/18 11:11
scumble 
01/30/18 11:11
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

Understood. Thank you Stef.

01/30/18 11:57
Stefan_K. 
01/30/18 11:57
Stefan_K. 

Re: Advice please re. RT for Dupuytrens, & the rest

To be more precise, you want to have a safety margin around the detected nodules, because when new nodules appear, they are often in the vicinity. A less experienced doctor may treat just the nodules he sees. Has happened to me. Others may correct me on that, but I'd say the treated zone should extend about 2 cm around the nodule(s), but may depend on a number of other factors I am not an expert in. Best raise the question how he defines the area to be treated with your doctor.

01/30/18 13:31
scumble 
01/30/18 13:31
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

Stefan_K.:
To be more precise, you want to have a safety margin around the detected nodules, because when new nodules appear, they are often in the vicinity. A less experienced doctor may treat just the nodules he sees. Has happened to me. Others may correct me on that, but I'd say the treated zone should extend about 2 cm around the nodule(s), but may depend on a number of other factors I am not an expert in. Best raise the question how he defines the area to be treated with your doctor.
I'm very glad you mention this. I think it also came up in another of your posts somewhere. It's timely because I'm seeing the doctor tomorrow. He promised to study the literature so we will compare notes. Thanks once again.

01/31/18 14:00
scumble 
01/31/18 14:00
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

I'm now in debate with the Korean oncologists about the protocol. One of them is willing to go as far as 10 fractions at 2gy, but might be persuaded to increase to 3gy. The other is prepared, if I insist, to follow Dr. Seegenschmiedt's protocol of two series of 5 fractions at 3gy, although he would be happier with the alternative of 7 fractions in one series. But he cannot understand the purpose of the 8-week break between the series. In fact, Seegenschmiedt came to believe that the two series of 5 x 3gy with a break of 12 weeks gives the best results.

At the moment, neither is prepared to allow a 2cm margin for subclinical disease (recommended by Dr. Seegenschmiedt as well as Stefan_K.) - they don't want to go beyond 5mm.

As someone who knew nothing about either Dupuytrens or radiotherapy until a few weeks ago it's not easyfor me to argue with these professionals and of course I respect and understand their position. It would be helpful if someone could explain to me exactly why the break (of 6-12 weeks) is required, so that I can put this to the doctors. All I have been able to suggest is that it minimizes adverse effects to the skin and allows it to recover, but this idea doesn't impress them.

01/31/18 14:28
Stefan_K. 
01/31/18 14:28
Stefan_K. 

Re: Advice please re. RT for Dupuytrens, & the rest

My understanding is also that the reason for breaking up the treatment into two series is to let the skin recover, especially when delivering 3 Gy per session.

I have read your previous posts again and looked at the photo, and I am not certain I fully understand the areas your doctor wants to treat, with the 5 mm margin. Would you be able to mark them up either on the photo, or on your hand and take another photo of it? In the end, did you see the MRI image and did you get a copy of it?

01/31/18 17:54
spanishbuddha 

Administrator

01/31/18 17:54
spanishbuddha 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

ProfS addresses the protocols, dose and break, in his talk at the 2015 conference https://youtu.be/x_vecaIme58.

Most of the studies with a control have been done using the 5x3Gy break 5x3Gy, examples http://dupuytrens.org/DupPDFs/2010_Betz.pdf and http://dupuytrens.org/DupPDFs/2012_Seegenschmeidt.pdf.

There is a paper comparing doses https://www.ncbi.nlm.nih.gov/pubmed/11172962. Edited to add https://www.ncbi.nlm.nih.gov/pubmed/11233838. There are many papers on the topic and I’m not really qualified to analyse them or comment further. Except to say the person who has led the way in this field, ProfS, uses the 30Gy with break protocol.

Not sure about the margins, the counter argument would be why 5mm and not that used by Drs experienced in treating the disease?

Edited 01/31/18 19:04

02/01/18 14:16
scumble 
02/01/18 14:16
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

Thanks again SB & Stefan for your kind interest...

Quite agree about the margins but after today's meeting I think the counter argument has successfully been made. I've seen the Prof's conference presentation and will check those papers; thank you.

Meanwhile if you are still curious I'll attach picture of 'therapy field' marked on hand today. The dotted line (fairly indistinct even in the flesh) is heart-shaped and (for the moment) runs 5mm around the recently-emerged 'Y'-shaped nodule formation. Perhaps you can also see also the isolated cord that appeared two years ago on the intermediate phalange, long before I knew RT was a possibility. The material there is now less compliant than the new growth in the palm and I accept the doctor's opinion that it's unlikely to respond to RT.

My foot is similarly marked but that's Ledderhose and I'll spare you the sight.

We have not yet discussed results of MRI & CT scans. I was actually required to have both (yes, I have a copy of the MRI). I was told that the radiation dose from the CT adds only 0.006gy to the RT total (RT will begin next week).

The oncologist is willing to follow either the 21gy or 30gy protocol, and also extend the field margin to 2cm, according to my wishes. Meanwhile he asked to see Prof. S's 2015 conference video and any other related material I can provide.

(The first oncologist I consulted believes the 2cm is a 'safety margin' necessitated by the 'inexact science' of palpitation practised by European specialists. This decided me in favour of the second oncologist, who is more accommodating).

(But both are experienced in the use of RT for non-malignant disease).

Kind regards

Attachment
DD Seoul 1.2.18.jpg DD Seoul 1.2.18.jpg (8x)

Mime-Type: image/jpeg, 1.784 kB

 1 2 3 4 5 6
 1 2 3 4 5 6
surgeon   treatment   Dupuytren   another   Seegenschmiedt   nodules   Warwick   contracture   irradiated   radiotherapy   experienced   dupuytren-online   surgery   spanishbuddha   Dupuytrens   further   protocol   recovery   physiotherapist   oncologist