| UK treatment of Dupytrens using radiation |
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01/13/2009 15:11
Mary 
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01/13/2009 15:11
Mary
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Re: UK treatment of Dupytrens using radiation
Hi Trev, just returned home from visit to see Dr Goode, what a pity we didn't meet up while I was there. The weather was AWFUL. My appointment was for 2.30 but I arrived there 3 hours early and because the weather was so bad I just sat and read the newspapers. I was actually called in 15 minutes early which was a big surprise. I stayed the night in a travelodge at Ringwood on the way home but when I go for the treatment I will have to look for something a little more comfortable. Good luck Trev and keep us informed how you are doing. Dr Goode did say I have symptoms in my right hand as well which I hadn't picked up on so he will keep an eye on that but he will start treatment on my left hand, hopefully in March.
Mary
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01/13/2009 20:17
TrevB 
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01/13/2009 20:17
TrevB
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Re: UK treatment of Dupytrens using radiation
Quote:
Hi Trev, just returned home from visit to see Dr Goode, what a pity we didn't meet up while I was there. The weather was AWFUL. My appointment was for 2.30 but I arrived there 3 hours early and because the weather was so bad I just sat and read the newspapers. I was actually called in 15 minutes early which was a big surprise. I stayed the night in a travelodge at Ringwood on the way home but when I go for the treatment I will have to look for something a little more comfortable. Good luck Trev and keep us informed how you are doing. Dr Goode did say I have symptoms in my right hand as well which I hadn't picked up on so he will keep an eye on that but he will start treatment on my left hand, hopefully in March.
Mary
You could have come to the hotel Mary. I was sitting in the bar area surfing the net because the weather was so grim as you say. My treatment appointment was 4.50 so I was at a loose end myself.
Glad that you got sorted out. Let's hope that the treatment works for us both (& everyone else!) without any problems.
Overall I found it quite unsettling having to go to a cancer centre to receive treatment. I had to sit in the main waiting area on Friday when waiting for my treatment planning and a lady came out of one of the consulting rooms after her husband, I assume, had just been given the worst possible news. She was in pieces and had to be ushered into another room to recover. I really didn't want to see that.
A paper by M. Heinrich Seegenschmiedt sort of touches on that:
"Radiation medicine has much to offer to other disciplines, but it also has to overcome the organizational difficulties and the indifference of medical colleagues. Why should patients with painful osteo-arthritis enter a cancer center to receive adequate treatment? Why should cardiologists enter a radiation oncology department to receive adequate service for their patients? As always we have to stand up and offer our services to other disciplines by approaching them, organizing our departments differently or providing services by going into other clinical settings. We should provide teaching to other medical disciplines in order not to lose our service to them, but rather to gain support for our field of radiation medicine. We could be a much larger and more important medical discipline in clinical medicine if we were not solely in the oncologist’s corner."
http://www.benign-news.de/Thoughts/thoughts.html
Good luck with you're treatment when it happens. My second phase will be in March so you never know.
Cambidgeshire, UK.
Edited 01/14/09 00:58
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01/15/2009 05:31
rjjesse
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01/15/2009 05:31
rjjesse
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Re: UK treatment of Dupytrens using radiation
After losing both my mother and father to cancer in 1994 (within two weeks of each other) I have had my own share of radiation and oncology waiting rooms. It was a little unsettling to see once again the pain of these unfortunate people but I am ever so glad for the opportunity to try to arrest the development of my early dc. A real heart breaker was a four yr old patient brought in from the hospital, to the waiting room, bald, with a protective mask over his mouth, alone, to wait his radiation treatment. The therapist had to leave him there while he briefly left to set up for the treatment. I was able to sit with him and tell him about my own grandson for a few minutes although he only looked at me with no response. I have been haunted by his face every since and the thought of the parents who had so little love for this little tyke. I wish I could feel that this little guy felt some kind of support from those few minutes I sat with him but I doubt it. I have been heartbroken every since. I try to look at this as an opportunity for reflection on my own good fortune and a wake up call not to enjoy every possible day. rjjesse
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01/15/2009 05:36
rjjesse
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01/15/2009 05:36
rjjesse
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Re: UK treatment of Dupytrens using radiation
Of course I meant to say, to enjoy every possible day. And also to take a little thought of the people I take so for granted. rjjesse
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01/18/2009 19:44
TrevB
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01/18/2009 19:44
TrevB
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Re: UK treatment of Dupytrens using radiation
I know what you mean. I've just finished my first week of RT and am glad to be home and not going back until March. The staff were great and the treatment not a problem but I don't enjoy hospitals at all these days and psychologically found it quite tough.
Cambidgeshire, UK.
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01/22/2009 20:37
TrevB
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01/22/2009 20:37
TrevB
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Re: UK treatment of Dupytrens using radiation
Had a follow up appointment with my GP today and found it quite depressing. I hadn't much to report because I'd only seen Dr Goode twice for a couple of minutes and had my treatment given by the radiotherapy staff. My GP hadn't yet received any information from Poole and he asked me what I had been told to expect in the way of improvement? I explained that I not been told too much and that my expectations came from what's given on this website. He didn't seem too impressed and seemed to think that a proper trial was needed to provide some UK evidence on the usefulness of radiotherapy. My impression was that he wouldn't suggest this for another Dups patient without that. He does seem aware of NA now though so that's some progress because he didn't before. Personally I've gone from being fairly happy with what I've done to doubting myself again, all in a morning 
Back to work tomorrow though and then phase 2 at the beginning of March.
Cambidgeshire, UK.
Edited 01/22/09 22:40
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01/23/2009 18:21
pixi 
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01/23/2009 18:21
pixi
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Re: UK treatment of Dupytrens using radiation
Hi, Trev!
We just missed each other--I was down there on Monday for my follow-up.
Dr Goode still wants me to watch and wait because he still feels 34 is too young for radiotherapy.
I have another appointment in a year -- I feel better knowing I have someone familiar with the condition tracking my process.
I hope you feel better soon; Dr Goode as you know has a conservative approach, so if he recommended treatment for you I'm sure it's the right thing.
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01/24/2009 07:32
newman
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01/24/2009 07:32
newman
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Re:Hi Pixi Radiotherapy and age.
Australia Calling, Hi Pixi. I have a daughter your age and personally I would not wish her to have radiotherapy at 34 yr. In reading Ive done the age of 40yr pops up a lot as being age where the risk factor deminishes. Sounds as though your Oncologist is on the ball. Regards.
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01/24/2009 20:09
TrevB
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01/24/2009 20:09
TrevB
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Re: UK treatment of Dupytrens using radiation
Quote:
Hi, Trev!
We just missed each other--I was down there on Monday for my follow-up.
Dr Goode still wants me to watch and wait because he still feels 34 is too young for radiotherapy.
I have another appointment in a year -- I feel better knowing I have someone familiar with the condition tracking my process.
I hope you feel better soon; Dr Goode as you know has a conservative approach, so if he recommended treatment for you I'm sure it's the right thing.
Hi Pixie
Shame that! I just missed you and missed Mary the week before, such is life
My time with Dr Goode has been very short so I've not been able to get to know him and form an opinion. Due to a bad RTA I suffered and related health issues I have always had real time to get to know and feel confident with my GP and consultants. This is certainly different, feels somewhat rushed and more impersonal. I've had my first 15Gy over the whole palm without too many problems apart from the crease near the thumb being red and a little sore (my hand was dry before we started because I'm so hard on it as it's the only one that I can use fully so some effect was more likely I suppose). It would be nice to be able to have another consultation to see whether another full 15Gy is needed or if such a large area still needs to be radiated? My visible problem area is in the palm below the small and ring finger with nodules possibly just starting on the second finger in the palm). My next visit is just to radiotherapy so IMO a further consultation is clearly not going to happen which is a shame really.
Just a reminder of my treatment area:(
I'm glad that you feel good about the advice that you're getting. You're trying to keep on top of it before it gets a hold. That has to be so important when you get it so young. Keep reading and learning.
Regards 
Cambidgeshire, UK.
Edited 01/25/09 09:51
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01/25/2009 18:21
pixi
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01/25/2009 18:21
pixi
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Re: UK treatment of Dupytrens using radiation
newman, comforting words from a caring dad, thanks! do any of your kids show signs of DC?
trev, it's a shame consultations have to be so rushed these days. i spent the whole day traveling out there and back, and i spent far more time stocking up at julian graves in the mall than i did at the hospital! but the good thing is that thanks to the wealth of personal experience on this site we are all well supported.
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