Hey all,
Wanted to share my diagnosis in case others have experience with this, have questions while I go through treatment...and this is a bit of anxiety release to write everything down. :) If you want to skip the long story, and look at questions I have, see the second dotted line below.
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I was diganosed with Bowen's disease on Saturday (14th Oct). Bowen's Disease is squamous cell carcinoma (in situ), meaning cancer cells are limited to the upper layer of the skin and have not become invasive. It was a single small (maybe 2mm) lesion on the penile shaft, near the bottom. The biopsy removed the visible lesion entirely, although the biopsy came back with atypical cells on the margins. So the journey continues.
I first noticed it in April. Though it was an STD. I had also had molluscum many years ago in the genital area, and thought maybe that evil business had returned. Went to STD clinic. I should have known right away something was off, since the very experienced STD clinician didn't recognize it as anything she had seen before. But assumed genital wart. It almost looked like it was below the skin, not like a wart sitting on top. I likely would have opted for cryotherapy (used this for molloscum) but they didn't have that option, so clinician used Tricholoacetic acid (TCA). TCA is generally effective for warts after a few treatments.
The TCA didn't do much, so did it again a couple weeks later. No resolution. But now the TCA treatments are causing some burn scarring. Moved to cryotherapy. This was probably a mistake - I should have went to a urologist at this point, as it really didn't look like a wart, and wasn't mollsucum, and I've had actinic keratosis on my forehead before (excised 100%), and this was seeming similar. I say mistake - because the cryotherapy was done poorly - very superficially over a couple seconds, so would have been useless for anthing, let alone cancer. If I had taken it more seriously I would have opted for much more aggressive cryotherapy to deal with even a suspected wart, but I was concerned about cosmeetics. Uggh.
So, the cryo was done poorly - very superficially - and I knew it wasn't going to work. But a couple days after I already made the decision to talk to a proper dermatologist, and was looking at C02 laser surgery. So in August - went to proper derm. She also didn't know what the lesion was, as by this point it was heavily "modified" with all the cryo and tca. She assumed wart though, and did very very small sized C02 laser treatment. I refused local anesthesia, figuring surgery would be quick, but with no anesthesia she hesitated on doing significant treatment. But I had heard C02 laser was so effect with warts the minimal treatment was likely enough. She didn't agree, but didn't want to push the pain. I'm dumb.
Interestingly - since C02 laser is also another somewhat effect treatment for Bowens, I noticed after about 2 weeks that the lesion was practically split in 2, since the C02 Laser was really only done directly in the center of the lesion, and I mostly gave up before it went any further. Had everyone known what this was, that laser therapy likely would have been very aggressive, under anesthetic and with wide margins.
So - of course that didn't work. Returned for follow up, and C02 laser dermatologist suggested excision and biopsy instead of another C02 treatment. Referred me to a great surgeon in September. Unfortunately surgeon didn't do genital surgeries, so referred to urologist on October 7th. Urologist did immediate biopsy, 3 stitches, healing well so far. As mentioned, biopsy came back positive for Bowen's Disease (squamous cell carcinoma in situ), and biopsy wasn't wide enough to catch it all.
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I have been given 2 options from urologist:
1) Wide excision of 10mm.
2) Allow biopsy site to heal and use immiquimod for 6 weeks with continued observation.
Urologist strongly recommends excision. He was very clear to me that even though this isn't particularly serious yet, it is potentially very serious, can kill if it becomes invasive. He wants to room for error. Probably smart. My primary concern with 10mm excision is....even if it's successful, what if there's another lesion? And then another? Can't keep cutting out that much skin - my hope is for an alternative, or much smaller excision margin. (I mention below I will be seeing another specialist on Wednesday for 2nd opinion.)
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Questions:
1) Has anymore here been diagnosed with same disease?
2) If so, what options were you given?
3) If you have gone through excision, do you remember what the margins were? I'm very concerned that 10mm is too large (it means an excision 2cm high and possibly 6cm wide, since it's elliptical excision with 3:1 ratio, and the margin is measured from the center all the way around.) This is a substantial piece of skin to remove. Urologist confirmed this will leave a scar, likely over 2 inches long, and it does increase risk of complications (erections during stitch period, possible infection, etc.)
4) If you've had a large skin excision from the shaft, has this affected erections? How was your scarring.
5) And lastly, if anyone has had this, have you only had one lesion, or multiple? I'm not quite concerned that this won't be the only one. It's impossible to know, but curious if others have had multiple, or recooruences in different areas.
6) Is your penile cancer diagnosis (any kind) linked to HPV diagnosis?
Thanks for reading, and thanks for any comments / replies.
Lastly - I'm seeing another specialist on the 18th who specializes in Mohs surgery (which seems to the gold standard for this disease, since skin is directly analyzed DURING surgery and skin removed until margins are 100% clear). He also has a academic papers specifically published on Bowen's Disease, so I'm quite lucky to get a consultation. I can attempt to ask him any questions you have if you have the same / similar disease.
Cheers.
EDIT: Oops - to add - I'm a 47 year old white male, with very very fair complexion (ghost white!), with history of actinic keratosis from sun damage on face. Also a heavy smoker - although I have a deadline to quit this week - and an avid long distance runner surprisingly. Stupid I know. Love my cigs. Love my running. Although HPV is suspected, it has never been confirmed either by sight or with the lesion biopsy. Urologist assumes it is likely HPV related. As far as I know I have no HPV lesions, but I will be having a complete check over (anal and penile area) this week.
