Is Plaque/Fibrosis growth INTO the Glans (head) possible w Peyronies Disease?? Something else?

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Jscout

Started with a pea-sized lump on the bottom right of the shaft approx 1" below the Glans in November 2018.

Now I have plaque/fibrosis all the way thru my shaft. When flaccid, it looks like I shoved a golf ball into my penis (you can clearly see a round bulge all the way around my shaft).
A few months ago, the mass started to spread slightly under the top of the Glans.

I got an MRI in early August. My current Urologist (who was listed as a Peyronies Disease Specialists) said he's never seen a case like mine and he declined further treatments! However, he did help me get an appt with a Specialist at OHSU within 14 days! I had tried myself to get into OHSU, and was told there was a 6 month wait just for a consultation. After reading my files & images, the Specialist at OHSU took my case even tho he isn't accepting new patients. My appts at OSHU have all been right near closing (4:45pm, they close at 5pm). The Doc is literally taking me on after hours, and my case seems to really intrigue him.

The OHSU Doc wants to begin Xiaflex asap during the Acute Phase to hopefully slow down the rapid growth.
The Urologist I had been seeing prior to OHSU is adamant I should get a core sample taken for Cancer testing.
I'm not sure what to do. The core sample is not without risk! If it was easy, they would have already done it (the Doc's own words)

Recently, the mass is approx 1/4" under/into the top side of the Glans, and has grown under/into the bottom of the Glans as well. Pushing against any resistance with the Glans has become painful. The Glans does get fully engorged still. It only hurts when pushing against something (penetration)

Has anyone here experienced plaque fibrosis growth inside the Glans/Head area?

This pretty much rules out any of the stretching devices, but I have still been using my SOMA pump. Pumping helps to fill in the dents. Pumping earlier in the day prior to sex seems to really help with the pain levels too.  I've had some wickedly painful erections lately.

I am very blessed to have a loving & supportive Wife of 20 years. I am 40 yrs old, relatively fit & active.  
~Diagnosed Nov 2018, right before my 40th B-day
~Frustrated loving Wife
~Pain w erections
~NO medical progress
~Was naturally curved up like 🍌, straight at initial diagnosis, now curved right & twisted 😢
~Denial/Depressed cycle 😭
~Mass growing!!

diehardpatriot

It may be possible. I'd fix up my diet, keep pumping, and abstain from sex at least 2 weeks at a time if I were you  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

TonySa

Wow, is it possible to explore xiaflex w the specialist AND the possibility of cancer?  Sounds much more complicated than diet and nofap...
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Hawk

iI would assume and hope that if there was a possibility of rare penile cancer that one of the doctors seeing you would have referred you by now.  I wish I had answers.  Good luck to you and please keep us updated.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Jscout

I've been talking about having a large "growth" in my last few posts. I looked up my 3rd Doc's notes from July 30th and my 4th Doc's notes from back on August 6th, figured I would post them for reference. My Peyronie's has spread considerably since the Doc noted a 4cm (1.58") plaque. It's now at least 2 1/4" long and consumes the entire shaft and is protruding into the Glans/Head. Apologies up front for the long post! No worries if it's too much to read. It's a copy & paste from my Doc's notes from my last 2 visits w 2 different Specialists.

This isn't a "contest" that I want to win. I don't want to one-up another guy. I was just as scared when I had a grape-sized lump and a 20 degree curve as I am now with a 2"+ mass and large visible golfball sized bulge. This Group is very important to me, I don't want you guys to think I'm bullshitting ya'll or trying to prove anything for some strange reason. It just means alot to me to be validated w what I'm experiencing. I hope that makes sense, and thank you all for being part of this very helpful Group!


From the 4th Doc at OHSU on August 6th:
GENITOURINARY: The penis is circumcised with 4 cm evidence of plaques. The urethral meatus is normal. The testes, epididymides, and cord structures are normal in size and contour bilaterally. The scrotum is normal in size and contour.
IMPRESSION
(N48.6) Peyronie's disease (primary encounter diagnosis)
Had a long discussion regarding diagnosis and treatment options for Peyronie's disease. We discussed capturing images of his erections from 2 angles monthly (we discussed privacy and security of images if he elects to send them to me). We also discussed PDU (with ICI). We discussed oral medications, injection therapy, plication, grafting procedures, and IPP (+/- grafting).
I agree with Dr. Meyers care and would obtain an MRI. If there is any infiltrative component then I would biopsy. I believe this is more likely very rapidly progressive Peyronies Disease and I would consider Xiaflex first.
We discussed incision and grafting.
Spent 60 minutes in direct face to face consultation


From the 3rd Doc at NW Urology on Aug July 30th:
7/30/19 -
He has developed additional thickened plaques on the penis that are indurated and have worsened his curvature. He also has several indentations on the shaft as well. He has a >30 degree rightward curvature. We considered Xiaflex to treat his fibrosis but the location and evolutionary nature of his plaques makes me hesitant to proceed with this. Furthermore, he has a large volume of plaqueing and it would take multiple rounds of injections before we start to see an improvement. We also discussed the possibility that this could be a penile malignancy, although it is rare for this to initially develop deep within the tissue. We could evaluate this with a needle biopsy. Unfortunately, this has the risk of inflaming the surrounding the tissue and causing additional fibrosis of the shaft and causing ED by creating a fistula. We discussed various options that the patient brought up, including stem cell injections, Hybrid Medical H100 Topical Cream, imaging, and prolonged fasting diet. I explained that I don't have extensive experience in these Peyronie's treatments. We discussed the option of seeking a second opinion from Dr. Hedges at OHSU, Dr. Levine in Chicago, or Dr. Goldstein in San Diego, whom he has had a phone call appointment with and did not enjoy. He will continue to consider a penile biopsy for now. I will contact Dr. Hedges and discuss the patient's case with him. We will have a penile MRI completed to obtain documentation of the plaques. Given the complexity of this issue, I would recommend the patient complete the biopsy and Xiaflex treatment with Dr. Hedges. Pt agrees to follow up with Dr. Hedges at OHSU
~Diagnosed Nov 2018, right before my 40th B-day
~Frustrated loving Wife
~Pain w erections
~NO medical progress
~Was naturally curved up like 🍌, straight at initial diagnosis, now curved right & twisted 😢
~Denial/Depressed cycle 😭
~Mass growing!!