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I have today telephoned Dr Goode`s Secretary in Poole who has informed me my GP did not need to refer my case to the PCT in Oxford. All she needed to do was to refer directly to th Oncology Dept in Poole. This is good news for all of us in the UK seeking Radiotherapy treatment for Dups. Dr Goode`s secretary kindly telephoned my GP informing her of the procedure and the referral has now been made. I woulld suggest to all of you seeking this treatment to urge your GP to make a direct referral and if you need any help call Dr Goode`s secretary Ann on 01202 442690. Looks like things are moving forward in the UK.

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I that this may be the best way to approach this. I have tried e-mail and then (as suggested on here) a letter which I also copied to my GP. I've received nothing from Poole yet but I probably made a mistake by putting "in-confidence" on my letter? I did quickly receive a reply from my GP saying that it would need to be referred to the PCT which does back up the above quote.

Personally I've always been worried about radiotherapy because I see this as serious treatment that I'm not qualified to understand. Although the dose is stated as low, the Gy does seem comparible to that used on some cancers? I had just about talked myself into it when hand surgeon popped up with a post that once again raised my concerns. I'm now still waiting and watching as my nodules slowly increase in number and size, which is another worry

Barry Newman kindly sent me Dr Seegenschmiedt's 2001 paper. The first part that concerned me was the refererred patients who refused or did not qualify (26 of 168) following examination and counselling? Counselling never seems to get much of a mention but is an important part of the jigasw for me. What is said? Is there anything more recent than 2001 on this subject?

Just a couple of points Phil. I thought I read that an appointment with Dr Goode would be a Friday with a week of treatment starting on the following Monday if suitable which doesn't give much thinking time. Is that how it worked for you?

The hand surgeon that I saw said come back when you can't put your hand flat and have surgery which will leave you with a lot of scarring. I found that very worrying as I only have the use of my right Dups affected hand and he thought the best option was to cut it up and take it out of action

Regarding you're confidence about future surgery if radiotherapy didn't work, the post from hand Surgeon (is this a geniune person or a student ) said "I can tell you that there is a lot more diffuse scarring after the treatment which makes any subsequent treatment very difficult and the skin is of a different texture again adding to the difficulty of surgery." - is that true?

I've been my own doctor before for minor things and found that rewarding but generally I have trouble making decisions and this is at a level I can't really cope with, at the moment anyway

Another thing which is disappointing but I can't do much about is the fact that Poole is an unpleasant 4 hour drive on a good day but Addenbrookes is only 40 minutes away. I would imagine that Addenbrookes has suitable equipment and specialist staff who can treat benign conditions in the same skilled way that Dr Goode clearly can. Maybe one day they'll offer the service? (anyway, that's just a gripe. The important bit is above!)


Edited at 05/13/08 12:22

I have had radiation and the texture change to my skin was mild and has improved over time. I can't imagine that this would make a difference if I ever do really need surgery. I'm really pleased with my decision and results.

Really good to hear the encouraging progress report from Judith.
I am also really happy to confirm that my experience with radiation treatment is very positive.

My last treatment session was 2nd week of March 2008. I have since had a review meeting with Dr Goode (Poole Hospital, Oncology Dept) and a further review meeting is planned for November.

Here's a quick summary of my findings so far:

• Pain or discomfort - virtually none throughout
• Dry skin - slight issue during the treatment period but this was easily resolved by using a hospital recommended hand cream. Texture of both hands is completely normal.
• Nodules - all 'softer', some better than others
• Cords - I have one significant cord on my right hand stretching between the base of my thumb and index finger. This was so 'tight' that even a morning electric shave was uncomfortable. This is no longer an issue at all. The cord appears to be more flexible/soft.
• Progression - My right hand is most affected but appears now to be relatively stable. My left hand was in the very early stages of the disease and this too seems to be very stable.

From my own experiences so far, I can only urge anyone (particularly in the early stages of Dups) to seriously consider this non- invasive option.

Whoops - not the same Phil!

Hi Wolfgang,

Just to avoid any possible confusion, I am not the 'Philip' featured in the 'Experiences with Radiotherapy' lead articles.

Regards,
Phil Waite