Recently diagnosed, atypical presentation

[concerns]

Hello all.

I am 29, was first diagnosed about 6 months ago shortly after noticing a small palpable lump near the center of my penis behind the glans. Saw a GP who said it was typical Peyronie's and referred me to a urologist. Unfortunately, I moved to the UK shortly after that so it's taken me several months to get around to securing a GP and urologist here. I've just been to a GP, got a prescription for Potaba (I asked about Pentox but he said it wasn't authorized in the UK?) and should be able to see a urologist sometime in the next couple of months.

Having read some of the medical literature, case studies, and reports on these forums, I'm worried that my case seems atypical and could be a misdiagnosis of epithelioid sarcoma. Over the past ~6 months the initial plaque has grown to encompass the right and much of the left side of the last 2 cm or so of my penis behind the head, including the septum. Both corpora cavernosa feel palpably lumpy and hardened. I haven't noticed any overall erectile dysfunction aside from localized hourglassing, and I have no trouble urinating. There is occasional moderate pain with or without erection.

My main question is: how unusual is this form of the disease? Should I try to push for a urologist visit sooner so that I can get a biopsy? Does anyone else have experience with Peyronie's plaques that encircle one or both sides of the penis completely?

[nemo]

You haven't described anything unusual, I'm afraid, simply a nodule that has grown which, unfortunately, is fairly typical of Peyronie's.  Don't start worrying that you have cancer - you've seen a doctor already, if you had a penile cancer, he would have made that determination.  

I don't think your case is particularly "atypical" - it just sounds like Peyronies Disease to me, unfortunately.  

Best,
Nemo

[james1947]

I will second Nemo.
The spreading lump you are describing (something like a ring) is what I have close to the base and makes me left bend, narrowing, ED and bend even it is softened now.
I will also say that you should see an urologist to be diagnosed and to do everything you can to start treatment.
From the forum experience Potaba have not too much a success.
VED, Pentox and low dose Cialis may stop the progression of the disease and reverse the symptoms especially if treated early.

James

[concerns]

Thanks for your helpful responses. I realise you probably see a lot of panicked people crying cancer, and I know that the odds are overwhelming that it is just peyronie's. My main worry is the way it seems to be internal as well as external to the corpus, but that could also be explained by very thick scarring in the septum or other fibrosis. I'll have to wait until I can see a urologist for a proper examination. It's just  difficult in the meantime with such limited information. I appreciate the reassurance.  

[Old Man]

concerns:

As a person who has had prostate cancer and had it removed in 1995, I can relate to you somewhat of things you might want to consider doing.

First, if your father or any male sibling has had prostate problems including cancer, you are likely to acquire it to at some stage in your life. I understand that the odds for that is about 50%. I had no knowledge of my father or grandfather had prostate problems or not, but they most likely did.

Now, having said the above, second, you should get to a reputable urologist who can do the necessary tests to determine if you have symptoms of prostate cancer or rule out that you do. You should not panic, but find out for sure before doing anything else. Since you live in the UK and have the NHS you may or may not have issues with getting the proper doctor to see you to make the necessary determination for you.

You are not being overly cautious about this, so do your homework and make sure that you can rule out prostate cancer. It is better to be safe than sorry later. You may only have anxiety over the fact that you have something going on in your sexual area, but you need to know for sure.

Old Man

[nemo]

Old Man, he's not worried that he has prostate cancer, he's worried that he has penile cancer - which, as you know, is much, much rarer than prostate cancer.  So rare, in fact, I don't recall ever having anyone on this forum that's had it.  

Nemo

[concerns]

Old Man, he's not worried that he has prostate cancer, he's worried that he has penile cancer - which, as you know, is much, much rarer than prostate cancer.  So rare, in fact, I don't recall ever having anyone on this forum that's had it.

Yes, my issue is definitely local to the penis itself. Most of the descriptions of Peyronie's that I can find refer to it being limited to the tunica albuginea, but my condition does seem to include portions of the corpus cavernosa as well. I've read that in some cases fibrosis can extend into the corpus but the literature is very limited and indicates that it's usually related to surgical complications rather than a direct effect of Peyronie's itself. Does anyone have personal experience or other information relevant to this possibility?

[nemo]

I have lesions directly on the septum. They can form anywhere in the penis and can be difficult to tell by feel exactly where they are attached.  So stop worrying that it's cancer, you've had a doctor tell you that it's not. Accept that as good news.

Nemo

[skunkworks]

I do not think his fears are completely unfounded - International Journal of Impotence Research - Epithelioid sarcoma of the penis[mdash]a rare differential diagnosis of Peyronie's disease

We report on a case of penile epithelioid sarcoma in a 29-year-old man presenting with a dorsal penile plaque that primarily was misdiagnosed as Peyronie's disease. Although the initial clinical findings of these two different entities appear similar, the consequence for the patient is severe. The only way of differentiating these disorders are histological findings. The principal microscopic characteristics of epithelioid sarcoma are the distinctive nodular arrangement, central degeneration and necrosis of the tumor cells with epithelioid appearance and eosinophilia. Immunohistochemical data (cytokeratin, epithelial membrane antigen, vimentin, CD 34, desmin) confirm the diagnosis. We conclude that in cases with slightest doubts on the diagnosis of Peyronie's disease, especially in younger men suffering from a fast-growing penile induration, a bioptic clarification of the entity should be performed to exclude a high malignant disease that can be only treated as far as it is localized by radical surgery.

[Titleone]

Replace 29 with 37 and U.K. With USA and the OP perfectly describes my situation! Do you have an update to put me at ease while I wait for my appointment delayed by this Thanksgiving holiday week?!?

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