Diagnosed Bowen's Disease - Penile Shaft (Squamous Cell Carcinoma - In Situ)

Hi Carl74, I think you are now in one of the 9 specialist cancer urology centres in the Uk where they specialise in penile squirmous cell carcinomas. These specialist centres have a hugh amount of experience so I would take their advice as they have margin guidelines which have been proven over many years. 

I would certainly take their advice on surgery and I have read about  Mohs surgery which just makes sense.

I had a squirmous cell carcinoma on the glans which was cancerous and took the surgeons advice on margins. I was stage 2 and I believed this tumour would have killed me within a couple of years if I did not take the surgery option.

Your SCC is in a different place which may have consequences to the penis function but when your life is on the line which I think yours could be this should be secondary to your thinking. 

Also if you don’t have surgery and go for option 2 and it fails and cancer is discovered later then due to the SCC location surgery may be more extensive and a penectomy may be necessary. I am not trying to scare you but you need to research both options in full.

You say the biopsy was negative but you also say the biopsy maybe was not wide enough so does that mean there may be cancer in there. If that’s the case surgery is the option to choose in my opinion.

Sorry to be a bit blunt but I hope you get sorted quickly, I had lots of surgery issues but that’s for another time, I am now fine being monitored for 5 years.

Robert

Thanks for the reply Robert. Much appreciated. I'm actually Canadian! But I'm actually travelling for work right now (currently in Asia for many months)  which complicates things significantly. But luckily I'm in a place with excellent medical care facilities / specialists.

The main reason I was questioning 10mm was because the recommended guidelines in UK, US and (I think) France are 5mm for Bowens and specifically Stage 0 squamous cell carcinoma (in situ). This is why I've sought out a second opinion from a specialist in Bowens (and Mohs) - and I'm going to attempt Mohs surgery if possible. I may fly back to Canada for this. Jobs can be found again. :D

If that second specialist recommendation is also 10mm, and Mohs isn't an option, then that's what I'll do. 100%. It's definitely more about complications then cosmetic, so this is a question I want at least a second opinion on. And to at least understand better what serious complications can arise from 10mm margins taking from the penile shaft. Very nervous for sure.

And totally agree that I need to understand all options in full. I don't actually like the "wait and see" immiquimod idea. Seems like it'll just prolong anxiety without a clear "we got it" that may come from complete excision. 

And sorry if I wasn't clear - the biopsy was positive for Bowen's and the edges were not clearly free of atypical cells, so next excision has to be broadened. I actually never asked what margins were used for the biopsy. I do know the surgeon was going a bit wider (maybe 1-2mm) just in case, but not exactly sure how much (he showed me the excised skin and it look very very small), but it's penis shaft skin so it does magical elastic things so have no idea. Ha.

Really want to thank you for your reply, especially with your personal experience / perspective. And amazing to hear you're doing fine 5 years on.  

I'll continue to update this post for sure as I go along this journey. Writing helps stress, which isn't going anywhere for a while. :D 

Quick update - was able to see see a specialist on short notice yesterday. He is not convinced by pathology report. I guess it's not conclusive. (Was not informed of that). He also explained that "atypical cells on the edges" does not necessary mean cancer. It could mean inflammation or infection from prior treatment. I also didn't know that.

He's requested a new analysis of biopsy to be sure. He's also advised against wide excision, and says that is a last resort considering the location. We talked in detail about my prior treatments when I assumed it was a genital wart. He's following up on the places I got treatments (clinics) to see what they were using.

In his experience (and this specialist has published history on Bowen's treatment efficacy specifically, as well as specialist in Mohs surgery), Bowen's responds very well to both topicals and laser treatment. I explained that the C02 laser treatment and cryotherpay I recieved were very limited. Both were very narrow treatment, and laser was done without anesthesia and I couldn't tolerate it for more than a couple seconds. And was also performed at an aesthetic skin clinic, not with a clinical dermatologist. He said that laser treatment (if diagnosis was known) would normally be done with total destruction of the lesion and with 5mm margin around, and then potentially followed up by topicals (I'm guessing 5-FU / Efudex, but he didn't say yet) and observed over time. He said 10mm margin excision is not a first option for treatment in this area, and is extraordinarily risky (potentially life altering) as a first option when there are many other options available.

So now I wait for secondary biopsy analysis, and then follow up hopefully next week. For now, just waiting on 3-stich biopsy site to heal, which seems to be going well enough to exercise, since stiches were out 5 days ago and no pain, signs of infection and incision scab is almost gone. I didn't realize that genital skin heals much faster than other parts of the body (based on some reading), with less scarring and low chance of keloids. Curious if others have experienced this fast healing in the genital area, even anecdotally? 

Will update again soon.

Sounds like you are now getting some good advice before you decide on a way forward. I guess people like me who have had cancer confirmed just want the cancer removed whereas in your case cancer is a possible future diagnosis and you have options, I was only given one option.

I was told that wounds heal quickly on the penis due to the amount of blood that the penis can receive.

keep the updates coming and hopefully you will find the best course of treatment.

Like you I had to become knowledgeable in these medical terms very quickly.

Robert

Thanks Turninia. The specialist was clear that even though he wants second analysis, that means very little, it's still likely the diagnosis was correct, but he was surprised to see the prior doctor (urologist whereas specialist is dermatologist) was advocating wide excision when the report was not conclusive. He wants 100% confirmation. He was also surprised by the diagnosis considering age, no history of skin cancer or HPV (nor HPV detected in biopsy), and that prior treatments had no effect. I had photos of the lesion as well (over a 5 month period) and he found the images not consistent with the diagnosis.

Also had a discussion with a family member (not blood related) that has had dozens of BCC and SCC lesions (in-situ / Bowens, and a couple Stage 1) treated on back, head, neck and arms over many many years He's almost 80. Only a couple were treated with excision. All the rest were / are treated with laser, radiation, efudex or cryo...all with success. They've had a lot of success with efudex recently. Laser has been very effective as well. And surprisingly, cryotherapy has worked for a couple.

This is consistent with the specialists comments as well, that laser and topicals have very high success rates for Bowen's specifically. He was clear that, in his opinion, wide excision is last resort, or potential option if the Bowen's progressed to invasive SCC.

To be fair, the urologist also offered the option of "topicals and observation" but said wide excision was his 1st recommendation. I'm a bit annoyed that he never mentioned Mohs surgery, which is the gold standard for skin cancer. But this hospital does not offer that surgery (and it's private facility) so it might be a business thing. :) 

So two opinions, but the specialist seemed to take much more time with me to explain what was going on, understood the disease better, has treated the disease over decades, was the only one to tell me things like the biopsy result was not conclusive, had way more information on alternate treatments (especially more details on Mohs surgery, which is what I would 100% get over wide excision), and properly explain potential complications from wide excision. For example, I never knew that, for some people, penile scar tissue has the potential for chronic lifelong pain during sex / arousal. This is all information I should have been given by the first doctor, and seems important to convey to patients when given multiple options.

Anyway - now waiting game. Might a week or two till I have more information. 

Just a quick update - I actually opted for C02 laser ablation. This was after extensive discussion with 3 different specialists. I may still go for excision surgery depending on how this first treatment turns out. Will be back in for follow up on Monday (about 2 weeks after C02 treatment), and then again 2 weeks after that. Then routine follow ups every month for the next year. Doc wants to be sure there's absolutely no signs of recurrence...or other lesions popping up.. And if there is it will be immediate wide excision. (I have reasons for choosing laser, and that's after weeks of looking at clinical studies on Bowen's & genital Bowen's, and my surgeons specific experience with laser / Bowen's).

My anecdotal experience with C02 laser ablation: it is 10x more painful, 10x more difficult to keep clean / bandaged, etc. than my initial 3-stich biopsy. I did not anticipate what total obliteration of the epidermis was going to feel like (that is then left exposed to heal by secondary intention). Much much more involved than people who use C02 laser ablation for aging, wrinkles, etc. This was deeper (i forget how deep surgeon said), and treated about a 1.5cm circle (about the size of an American nickle). Like a burn, it leaks serous fluid incessantly for a week (I know some women need to change pillow casing after facial laser ablation because of all the leakage), and anything that goes near it hurts like a mf. It's been about 12 days now and seems to be healing okay - but healing MUCH slower than my stitch wound, so I'll see what specialist says on Monday. If anything looks off / out of the ordinary I'll likely be refered for excision...which I'm now thinking would have been easier than this haha. The pain is no joke - likely because my lesion is on the lower shaft, so the laser site is constantly getting squished / moved around while walking, putting on clothes, and god forbit water accidently hits it when showering. I know it's not even close to as serious as some people's stories here, but thought I mentioned my experience.

Also - I got the Gardasil 9 vaccine (1st dose). Figured it can't hurt, and I spent a week reading a ton of clinical studies, many showing possible correlation (but not definite proof) that perianal cancers (cervical, vulva, penile) from prior / chronic HPV infection, show (often) significant reduction in recurrence of cancerous lesions even with post-HPV infection vaccination. Again, this is still not proven, but the correlation seems to be high enough that it is recommended in many countries post-surgery. Although HPV was not found in my biopsy, I was actually treated for a suspected wart during my primary laser treatment, and surgeon / dermatologist is now convinced HPV is present (note: HPV strains that cause warts - usually 6 & 11 - don't usually cause cancer...cancer usually related to HPV strains 16 & 18, but many people get infected with multiple strains), but was likely destroyed in my biopsy site from prior lesion treatments (TCA, cryo, etc.).

I'm curious if anyone else with penile (or genital) skin cancers that are linked to HPV infection have also been recommended the vaccine - even though the vaccine is preventative not therapeutic. (The studies on this are fascinating, especially for women with HPV-related  CIN3+). There are now multiple on-going clinical studies (in many different countries) trying to reach a more definite answer than "might help", which may become official medial recommendation if the correlation is more substantiated. I also figured, if this is HPV related, there may be strains I haven't been exposed to, and there's also some good evidence that the vaccine may help with a) self-innoculation b) reinfection in the future. Again, not 100% proven, but even it's 1% chance, I'm in. :D

I haven't seen too much discussion of HPV in this specific forum, but it is the #1 suspect for all perianal cancers (vulva, penile, urethral, anal, cervix)...and connected to oral cancers as well. I was actually recommended by 2 specialists to have a complete check for tongue, mouth, throat, head / throat and lung cancer after this Bowen's diagnosis, just to be safe.

Thanks for the update, you are certainly  going through trauma and I hope this treatment is successful but if it isn’t you have a plan B.

I am like you I need to get into the detail of my diagnosis but you had so many choices and your diagnosis  was rare, I was not given any choice and a glansectomy with graft reconstruction seemed logical.

Watch very closely for wound infections they can occur within hours so don’t hesitate to get immediate help, one evening I was fine the next morning infection started to eat away at the wound.

I have read about HPV infection but had no experience of this.

Hope the wound heals and hope the treatment works, keep me informed.

I am almost back to normal just going through tests for bladder retention and/or urithra restriction. Bought a second hand bladder scanner to accurately measure my retention and measure any improvement from treatment. Having several catheters post surgery didn’t help.

Robert

Hi Carl74 and Turninia,

I am glad to have found your post in researching this diagnosis as there is hardly anything out there in forums considering how rare this is. Straight male here in mid-40s in the US.

I was also diagnosed with SCC in Situ (Bowens) on Penis base and shaft - 2nd opinion also confirmed the same results. The recommendation was to get Mohs surgery which I was recently done. The surgeon has recommended getting the HPV vaccine despite being over the recommended age group (up to 45 years age) and using the lotion (FU-5 or Immiquod) after I heal from surgery for future prevention - exact plan will be discussed during a future visit but for now I am told to focus on recovering from surgery.

The pathology reports indicated negative findings of some HPV strains (they tested a dozen high-risk and low-risk) including the 2 high-risk HPVs that mainly cause this cancer but the dermatologists are pretty sure it is HPV virus related and since there are many strains, difficult to test for all of them. 

Ever since I got diagnosed, as you all have experienced the anxiety levels are high. Doing daily meditations and affirmations which is helping a bit. I also have a few other spots (analyzing everything in the area, glans included) - not sure if it's age spots or related. The dermatologists and surgeon recommend monitoring it and using the cream. 

Can you please advise me who to go to for a complete check of head/neck/mouth/etc.? Is this a dermatologist or another specialist? Is this because of your smoking history? I am a non-smoker.

Hope you both are still active on this forum and hope to hear from you.

Hi NMD1, I think Carl74 is in a better position than I am to give advice as he has had similar issues to you.

My experience was a straight forward SCC on the glans which I had removed and skin graft forming a new glans.

Best of luck on your research.

Robert

Hey NMD1 - very sorry for late reply. I could not get back into my account as I had signed up on a throw-away email and totally forgot where I put all my info! Finally got it back.

So.....as for me. I ended up going with C02 laser surgery.  I had one of the best specialists around for this. That was around November 7th (I think!). I've had no recurrence so far, crossing the 4 month mark.  However, he went deeeeeeep into the skin. I didn't realize how deep...as it's only just now - as of middle of March - started to look normal again. The C02 laser can be brutal for some skin types (you can see some occasional horror stories from women who use it for facial cosmetics). I am one of those horror stories. haha. (cries). Had a minor infection, which has left some scarring, but it's quite minor. Unfortunately there was a red "demarcation line" left by the laser (in cosmetic use they usually taper the edges, but my doc went full laser blaster crater).

I opted against Mohs only because of potential complications from scar tissue on the shaft. And I do actually have some pain complications still from the biopsy surgery in October, but it's minor and fading pretty fast. I had a very long talk with the specialist about Mohs vs. C02, but he was fairly convinced that because of the size of the lesion (less than 3mm), and that the lesion had already been removed with biopsy, and pathology only showed 'atypical cells' on one side of the incision that Mohs would be overkill as a first resort. If there's recurrence I will be going for Mohs 100%. I think you made the absolutely right decision. 

I too was recommended the HPV vaccine even though no HPV was found in pathology, and despite also being over recommended age (late 40s). I've had 2 doses now - not sure I'll get the 3rd as there's some indication from WHO, etc. that 2 doses in adults should be sufficient. I'll make a decision about the 3rd when the due date comes up.

I was recommended the full throat, tongue, etc. check because of smoking history and risky sexual history. Clear so far. 

One other thing that has been recommend by another urologist was a colonoscopy, etc. just to rule out anything internal going on (rectum, colon, etc.) I have not done that yet, but I'll likely get that done next month as we're at that age where it's now recommended anyway.

I totally understand the anxiety. The first week after diagnosis I lost 10lbs - and I don't weight much! - and I was running so much (even the day after stiches came out) I lost 3 toenails. I talked to literally every person in my phone book. I told everyone what was going on...but this also resulted in some stories from family who some, coincidently, also had Bowen's disease, or various other skin cancers, and got dozens of anecdotes about their treatments (laser, cryo, surgery, radiation. effudex, immiquimod), and effectiveness, complications, etc. This helped a lot in my C02 laser decision as one relative in his 80s has been through 30-odd treatments for 30-odd skin cancer lesions, has the same skin type as me, and has had various success with all treatments and now opts against surgery and toward less-invasive treatments as 1st resort. I'm taking a risk with this approach, but I do have surgery as an option if there's recurrence - and I'm checking myself like a hawk, and seeing specialist once a month now.)

Anyway - I guess we're in the wait and see camp now. I really hope your anxiety has come down a bit. Mine took about 3 months from first diagnosis. But life is mostly back to normal now, sex life back to normal (somewhat...I'm a little more cautious now even as a straight single guy in a wild town). But this experience has definitely left a huge mark and reset some priorities. If it comes back, I think I'm mentally much more prepared for a worse outcome. These forums seem to help a lot of people, and experiences like this really helped me build a support group of friends / family that I can...considering how graphic this is....talk to about anything.

I'll check back in a few days to see if you replied. Really hope you are doing okay brother.