Hi everyone, Thanks for all your posts and special thanks to NeoV for the YT channel.
It's been about 6 months since I got my diagnosis. Holy crapola, what a mind-f**k. My very first symptom turned out to be a painless 3mm calcified lump mid-shaft, septal. Not the best spot for a plaque and kind of crappy that I'm already getting calcification. That was October 2020. In January '21 I was visited by one, now two, new hard plaques just under my glans. The first one wasn't calcified during my January ultrasound but I think it may be now. It feels a lot like the mid-shaft one. The septal calc is giving me a good sized dent on top. The ones by my glans are starting to give me a leftward curve. Only 5-10 degrees so far. I'm also in pain several times a day.
I also have dupuytren's, which is basically peyronies of the hand. I discovered it at the same time I noticed the peyronies. Lucky me! In the dupuytrens community there are many enthusiastic proponents of low-dose radiotherapy in the early stages. Many people profess that their dupytrens ceased progression or reversed following radiotherapy. It only works in the earliest stages of the disease, before fingers start to contract. There are now a handful of studies showing effectiveness, including one with a 15 year follow up demonstrating a very low incidence of adverse events. In Germany, treatment of Peyronies is more common than in the US. Dr. Heinrich Seegenschmiedt speaks about his protocol a few places online.
I was able to meet with a top notch radiation oncologist with a lot of experience treating dupuytrens and he's also open to treating my peyronies. It wasn't something he outright recommended. I had to ask and kind of drive that conversation. He looked up the papers I mentioned and I'm now awaiting approval from my insurance.
I haven't seen much mention of radiotherapy here so I'm curious if anyone else has had it or looked into it. It does carry some risk so I understand why people would be hesitant. The dose I'm considering, 30gy, is equivalent to about 10 mammograms. If I didn't have such a bad case I may not be looking into it at all. That said, if it can stop my progression before I get severe hourglassing and distal softening I'm willing to try. My dent is getting more pronounced by the day.
Anyway, I'm determined to master the psychology of this disease. I hit a really low point in January and I'm pretty sure it screwed with my health even more. It's hard, not going to lie, but we are all capable of becoming more resilient. I'm eating more healthy than I ever have in my life so there's a minor plus.
Hang in there brothers.
Welcome to the forum Timberrrrr! Very interesting screen name. The first thing you should do is read the survival guide ----->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 . This will answer a lot of your questions about peyronies. You can also do a global search on questions which have probable been answered here. Hawk is the creator and overseer of the forum. Welcome :) Mike
Welcome, Timberrrr,
It is great to have you here. The topic of radiating Peyronies Disease is a new one. As you say, it is a bit of a drastic step, but if it proved to be effective, it is one many would consider. My concern is that at this point, it is drastic with little promise of results.
We look forward to hearing how this progresses.
Is it reasonable to suspect that since its reported effectiveness with Dupuytrens is linked to initiating it before the ligament draws the finger, it would have to be initiated with Peyronies Disease before deformity?
Hawk
Thank you for the welcome, Hawk. and thank you Mikel7
In Dupuytrens, they say the best results are seen when contracture is less than 10 degrees. It doesn't seem to matter how long a "nodule" has existed, only how much contracture has occurred. My penis curvature only started a month ago and is still under 10 degrees. They sometimes use radiotherapy after surgery too, to theoretically limit the reactive inflammation that often occurs.
There is a Facebook group called DART (Dupuytrens Advocates for Radiotherapy) with many success stories. There are only a few papers, but what exists is promising too.
A Dr. Heinrich Seegenschmiedt is one of the more well known practitioners. He speaks about his peyronies protocol in this video. https://www.youtube.com/watch?v=x_vecaIme58
I mentioned that I was considering this approach to my very experienced urologist and he had no objection. I just received notice of insurance approval today so my treatment will start soon. I will share my experience here.
Update: I completed radiotherapy this morning. 21gy over 7 days. Dr Lue did an ultrasound this afternoon and says that my plaques seem to already be 1/3 the size they were three months ago.
I'd like to share a longer account of my treatment somewhere. Should I do so under "Alternative treatments?"
Either that or Developmental Treatments although neither term exactly fits. Take your pick. If this is in fact successful and gains some traction I am sure it will become a board of its' own.
Please furnish as much detail as you can on any studies, what doctors or hospitals are providing it etc.
Thanks
Hawk
Is there any updates here! I had radiotherapy on my left hand Dupuytrens and it worked like a charm — so far. I used steroid shots on my right. I am very curious about radiotherapy for Peyronies. The doc who did my hand unfortunately "doesn't do the penis". I am in the NY area if anyone knows a specific doctor. Thank you!