Radiotherapy for Peyronies Disease just completed - My Story

[timberrrrr]

I completed radiation treatment for acute stage Peyronie's disease two weeks ago and this is my story.

Background:

-First symptoms and diagnosis 7 months prior to treatment.
-Diagnosed with Dupuytren's at the same time.
-Started with 1 hard lump central, septal. In the following months I developed more nodules, cords, a dorsal dent, and just prior to radiation I had developed a 10-degree curve to the left.
-It was moving fast but I still had good erections.
-I had tried traction (RestoreX), some VED, and had been on Pentoxifylline for 5 months.
-I was able to see Dr Lue with my insurance.

Considering radiotherapy:

The idea to consider radiotherapy came from spending time in Dupuytren's Facebook groups.
Dupuytren's is essentially the same disease as Peyronie's on a cellular level. They just happen on different parts of the body.

There are many people in these groups who have had success with radiotherapy and they actively recommend it to newcomers.

For almost everyone who has radiotherapy (RT) for Dupuytrens the progression stops permanently, or at least for many years. Patient satisfaction is extremely high.

Important point:
For some reason, this only works in the early stage of the disease.
For the treatment to work you have to have it done before the fingers are contracted by more than ten degrees. I assume it's similar for Peyronies. It has to be early and active.

Once I had decided that I was going to pursue RT for my Dupuytrens I started looking into it for Peyronie's too.

One doctor in particular has been doing this treatment for several decades now and publishes papers about it.

This is the main one that piqued my interest:

Superficial radiation therapy in peyronie's disease: An effective and well-tolerated therapy
https://www.sciencedirect.com/science/article/pii/S2452109418301301

Here is Dr Seegenschmeidt discussing the process for Dupuytren's. He briefly mentions Peyronie's but the concepts are the same.
https://www.youtube.com/watch?v=x_vecaIme58

Pursuing treatment:

I found a local Radiation Oncologist who was experienced with treating Dupuytrens and got a referral to see him. We started out talking about the Dupuytrens and then I brought up my Peyronies. He had never treated Peyronie's before but he looked up the study while we were in the office and said he was open to the idea. First he wanted to see if my insurance would cover it and if my urologist had any objection. Thankfully, both hurdles were crossed and we scheduled a planning meeting.

Between meetings with the radiation oncologist I was able to have a video consultation with Dr Seegenschmeidt in Germany. Our connection was choppy but he agreed to speak with my RO to share some of his experience. I felt very fortunate that these two men were able to speak and coordinate on my care.

Planning:

The treatment that was decided on was 21Gy, delivered in "fractions" of 3Gy over 7 days. Electrons were used. The machine was a Versa HD.
There is also another protocol that is 30Gy total. That one is delivered 15Gy over 5 days, then a 12 week break, then another 15Gy over 5 days. Results are similar in both.

At the planning meeting the RO and his team started figuring out how they were going to set me up in the machine. I laid on my back and a lead shield was placed under my penis. My penis faced my feet and they taped the glans to the plate. Then they arranged other shielding and bolus in the area around it. We had one other planning meeting after that and then we scheduled treatment for the following week

Treatment:

For the next 7 days I went to the lab at 9 am for treatment. I was in-and-out in 30 minutes each time. The actual time the machine is on is only like 20 seconds. I didn't feel anything other than removing the tape.

Post-treatment

On the 7th day, after treatment, I had an appointment with Dr Lue. He is very fast with an ultrasound. He wrote on my chart that it seemed like plaques had shrunk but I sort of wonder if he wasn't just trying to be upbeat. Nothing felt smaller to me at that point. Maybe softer. He said my body would start absorbing some of the plaque. Who knows!

It has now been two weeks. Prior to RT I was doing RestoreX traction for 1-1.5 hours a day, often just to relieve the pain of hard flaccid. I did traction once between RT sessions for the same reason but I haven't since treatment ended. I haven't had hard flaccid since RT treatment. I wake up long and elastic like I did before Peyronies Disease. I have residual pain in the evening but not like before. Hopefully it dissipates completely. People in the Dupuytrens group say that pain can still last awhile after treatment so I'm not too concerned. I've been checking my erect state each day too and nothing has changed. That's a good thing. It was changing rapidly before.

Reflection

I still have some anxiety about it all. I worry about whether I got enough radiation to be effective. I have a 6" girth so I wonder if I might need more. Since I only had 21Gy I guess I could go back for more if my care team thought it was a good idea. I'd say I have about 1/10th of the pain I had before and much less cramping. I'll have another consultation with Dr S and my RO again soon. Dr Lue says to just come back if I need to. There is some risk of radiation-induced cancer down the road but this was a low dose and the most likely thing would be a skin cancer which I should be able to see and treat quickly. I'm just going to have watchful eyes for the rest of my life. I'll take it.

The most difficult part of all this has been that I can't find anyone to talk to who has had this treatment for Peyronies. They exist in the literature and it's been done since the 70s so somebody must be out there with a story. It seems odd to me that more people here haven't gone this route. It's been good to hear the stories of people getting this for Dupuytren's though.

I feel like I was staring down the barrel of a gun before radiotherapy. The multiple septal calcs and pain scared the crap out of me. I have no regrets and I feel like I can move on with my life now.  

Feel free to ask me anything.

[Curvekiller94]

Did it help with your curvature at all? I have terrible hard flaccid as well. This is really intriguing as I am feeling hopeless 7 months out from treatment constant pain etc.  

[timberrrrr]

Too early to tell on curvature. That takes time to correct from what I hear. What I can say is that it seems to have stopped getting worse. I'm hoping it does straighten and that my dent fills in. Pain has gone down significantly.  

[Curvekiller94]

Wow that's awesome man I'm gonna try to get in somewhere here

[Curvekiller94]

So far no plaques have been identified. However due to curvature and an indent toward the base I have been diagnosed with peyronies. Do you know if you need a plaque for treatment? Also do they administer the treatment directly to your penis or how does that work?

[timberrrrr]

Yes, they treat the penis directly. The machine is the size of a room. You lay on a table and the radiation is administered to the penis.

I don't know whether a plaque is "required." The decision is up to the radiation oncologist, who may want to consult with your urologist. The more important part is finding a radiation oncologist who treats benign diseases, ideally Dupuytren's. Hopefully covered by your insurance. Medicare covered mine completely. The "DART" Facebook group has a list of these RO's around the world. You can also consult with Dr Seegenschmiedt via video. He's the most knowledgeable person in the world about treating Peyronie's with radiotherapy.  

[Kobegianna]

I have similar case as yours. I have nodules/calcification/chords etc along the septum some almost into the glans. I havee a dorsal dent right below the glans head and also starting to see my glans start to tilt ventral and laterally to the left. Is the radio therapy shrinking the plaque/ calculations? Or just helping with the pain and stopping g the progression?

[Curvekiller94]

Might that affect fertility?

[Curvekiller94]

Do you have any updates for us after radiation? Is the pain level still down?

[Curvekiller94]

.? Yo did it work? Are you better please let me know I have been talking to docs about getting radiation and I don't want to if it didn't work  

[timberrrrr]

UPDATE - Sorry I've been away.

I received the 21Gy dose over 7 days method.

Radiation was done on the top/dorsal of my penis. The dorsal nodules have shrunken, softened, and the dent is filling in. That started right away.

Unfortunately, there was another group of nodules underneath that were newer and in the last couple weeks I've seen slightly more contraction there.

The thing to keep in mind is that radiation continues to work for several months after treatment so I can't be certain that this won't resolve itself too.

I had some pain start to creep in about a month after treatment as expected. It was the dull, dragging, veiny pain and occasionally shooting pains.

Pain is basically zero now, although if I stay "bunched up" or sit too long I can start to get uncomfortable.

The other method that is used is the 30Gy, with a 12 week break in the middle. In that method you get 5 days of 3Gy, followed by a 12 week break, then another 5 days of 3Gy. The idea behind the break is that sometimes there are fibroblasts that in round 1, there might be cells that too early to be susceptible to radiation. If you give those cells 12 weeks to grow out, they should be ready to be zapped after that.

So... I'm currently trying to find an RO who can essentially do a second round. In my case, I'm hoping to get another 9-12Gy over 3-4 days to bring me to the full dose.

What I can say is that radiation had an immediate effect. It basically halted progression in most places and it has completely ended my "hard flaccid." The changes that I'm seeing now are slow and subtle, whereas things were changing quickly right before therapy. I am optimistic that the second round will finish the job.

My recommendation, if you elect radiotherapy, is to go with the 30Gy/12 weeks break method as Prof Seegenschmeidt recommends.    

I think I'm one of the tougher cases because I have several plaques and cords

My current status:
Dorsal node and dent, eliminated

In the top third of my penis:
15-degree bend left
10-degree bend down
Some tightening

Erections solid, skin fine, no regrets. Optimistic to finish the treatment.

[Mikel7]

Interesting - keep us informed as to your progress etc....

[howtheheck]

Is Radiotherapy best in acute phase or is chronic phase ok as well?

[Lostandsad]

Don't some people get urethral strictures when they undergo radiation to treat their prostate cancer?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5017559/

I don't know how closely related this is, but I wouldn't want any radiation close to my penis. I personally wouldn't mess with this at all. I'm not the one to try to fearmonger, but it would really suck to get radiation on your penis for Peyronie's, only to end up with another debilitating disease such as a urethral stricture. It would be nice if OP came back and gave us an update...

[healthyconsumption]

Hey guys, for those of you that have hard flaccid, I do too. it has improved significantly after I started changing my diet and performed some stretches. It still hurts but it's better.

Might not do something for you but this is what I did.

First, diet had a huge effect on me. I started eating a 4cm wide sliced piece of fresh ginger. I can't tell you how much this helps me with hard flaccid pain and the settling down of the pain in Peyronie's. If you're going to start this, eat a slice twice a day, don't overdo it.

Cocoa or cacao, they work similar to Pentoxiphylline in that Pentox is a Xanthine derivative, and many natural caffeine like cocoa, green tea, guarana (part of COMP-4) are also Xanthine derivatives and are non-specific PDE inhibitor just like Pentox. You might say it has sugar in it but if you get 100% cocoa or cacao, it will have zero sugar (other than other form of carbohydrate in small amount).

Dynamic contraction (based on DCT's principle) by hanging on a bar, raise both legs up and then in a controller manner, lower one down (say left leg). Then raise the leg left up again, this time lowering might right. Repeat until I get to 10, or can't hang on anymore. I'm sure I'm going to get some abs by the end of this if nothing comes out of it lol. Just make sure you are careful and if it hurts in a bad way, stop.

Walk, this also made a huge difference. If you have pelvic pain + hard flaccid like me, man, it hurts to jog. Once I started walking and be gentle for about 10 minutes, I usually get tempted to run or job (DON'T do it, go gentle by just walking). Strangely, I found that the pain went away fast when I was walking on grass or slightly uneven surface (I had shoes on as I was in a public park and didn't want to step on any needles).

The way I sit, I usually sit on a chair and slouch and cross my legs or bring one leg up when I get lazy, these worsened things. Make sure your pelvic floor isn't supporting your whole weight in a badly shaped chair.

I don't think the improvement is temporary, as I feel less pain. Good luck with things and please bring something back to the community if something helped you.