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Rare diagnosis of penile cancer causes higher mortality rates and stigma, expert says


Stigmas about the disease have negatively impacted the treatment and management of penile cancer, such that patients feel shamed for having the condition and do not seek care, and physicians may not have enough experience with the disease to appropriately provide care. Curtis A. Pettaway, MD, discusses these stigmas further in the following interview.

As one of the rarest forms of urologic disease, penile cancer may not be recognized or treated appropriately. Even when it does, it is often either too late to preserve the penis or too late to save the patient.

Curtis A. Pettaway, MD

Curtis A. Pettaway, MD

Stigmas about the disease have negatively impacted the treatment and management of penile cancer, such that patients feel shamed for having the condition and do not seek care, and physicians may not have enough experience with the disease to appropriately provide care. Curtis A. Pettaway, MD, discusses these stigmas further in the following interview. Pettaway is a professor of urology at the University of Texas MD Anderson Cancer Center in Houston.

What are the stigmas surrounding penile cancer?

There are some stigmas both on the patient side and on the physician side. For patients, [penile cancer] will generally occur in middle aged to elderly men. There is something wrong with the penis and that's a private part. Among men, we don't often talk about these things. And so, this leads to embarrassment and resultant delay in seeking medical attention. I would say, probably a lot of the time, when a man is married, it comes to the attention because of the wife, and she brings it to his attention. He is then pestered to really get something done about this, to see what's going on, to seek medical care. So, a lot of times, a tendency is to deny it, or to think that it's going to go away.

Then, on the physician side, this is a rare disease. More commonly, you're thinking that a rash is related to something viral, or fungal or bacteria, so you're more apt to treat this with a variety of different topical preparations [or] oral antibiotics. Because it's rare and because it's on the penis, physicians may feel very uncomfortable with treating it, touching it, [or] taking tissue from this area. They're in a quandary of what to do if the process is not getting better over weeks to months. At some point in time, they're ready to refer the patient on to somebody else. So, I think the common denominator of this stigma is that there are patient-related issues—embarrassment, shame—that lead to delay in definitive diagnosis. And then, there are also physician-related delays in diagnosis. When you compound the patient delay and the physician delay, then you really get a delay in diagnosis. It's very common for patients not to present for a year after something has been going on in the penis, certainly 6 months, but a year is not uncommon.

How do these stigmas impact the management of patients with this disease?

When you think about a delay in diagnosis, the larger the primary tumor is, the harder it's going to be to treat and save the penis at the same time. So, earlier diagnosis potentially leads to organ or penile-preserving strategies. That's the key point. The other point is that with growth, over time, you give the opportunity for the tumor to potentially break off and embolize to the regional lymph nodes. We know that survival in patients with penile cancer is directly related to the presence of inguinal metastasis and the extent of inguinal metastasis. So considering this two management considerations are really important in delay. One, you miss the opportunity for early diagnosis, and 2, the patient may develop metastatic disease. The latter developement may not be curable with surgery alone or even chemotherapy or radiation. So, earlier diagnosis is really the key here.

Most urologists see maybe 1 case [of penile cancer] every 3 to 5 years. At a referral center like MD Anderson, we see maybe about 50 cases a year. So, compared to someone out in practice, we see a lot more. Fortunately, there are guidelines to manage penile cancer from the National Comprehensive Cancer Network and The European Association of Urology. But what we find, is that given the rarity of the disease and inexperience guideline-based care in penile cancer is often not followed. For instance, patients with no evidence of palpable lymph nodes and a high-risk primary tumor still have a significant chance of having inguinal lymph node metastasis (i.e., about 25%). If you're not familiar with the guidelines, you may choose to observe that patient, whereas if you are familiar with the guidelines and have more experience, you would likely perform an inguinal lymph node staging procedure or inguinal lymph node dissection. So, when you look at guideline-based care in penile cancer, especially with inguinal lymph node dissection, only about 25% of patients that should have an inguinal lymph node dissection actually get one and this adversely affects penile cancer impacts mortality.

On the physician side, inexperience with the disease and [their] reticence in doing procedures that they don't often do can relate to not delivering guideline-based care, and potentially poor outcomes. On the patient side, a physician might say, " I don't have a lot of experience with this. I want you to go to a regional center where they have more experience”. However due to lack of resources (i.e., transportation, funds for a hotel stay, COVID concerns, etc.) patients may be reticent to travel. So, in the rare disease delay in diagnosis, physician inexperience, and patients’ social circumstances can provide the “perfect storm” where patient outcomes are adversely affected.

What are some innovations in this space that have helped to manage the quality of life for patients with penile cancer?

I think in recent years, there certainly have been some advances in delivery of surgery, and also radiotherapy. For instance, in men with early tumors, organ-sparing or penile-preserving surgery is much more commonly being done now. We recognize that we can control the tumor and we don't have to have as wide [of] a negative margin as we used to think. So, that gives us the opportunity to spare the penis. Collaborations exist with plastic surgeons where more cosmetic-like end results are being achieved. There are opportunities using interstitial brachytherapy as a form of radiation, where you can preserve the penis and don't have to undergo an amputative procedure at all. From the primary tumor standpoint, again, earlier diagnosis when tumors are smaller means that you may not have to lose the penis utilizing either a penile-preserving or a radiation-based procedures. The other side of the earlier diagnosis is that for patients who need inguinal staging but have no palpable adenopathy, we may be able to decrease those complications by doing new techniques like dynamic sentinel lymph node biopsy. This procedure is guided by radio-labeled tracers that target then draining lymph nodes to be removed. Technology has really helped us in utilizing this strategy to only take out a certain number of lymph nodes, which can potentially decrease the complication rate for patients.

We are also using minimally invasive surgery via both laparoscopic and robotic techniques. So instead of making the 1 big incision, we're now making a series of small incisions and taking the lymph nodes out from underneath the skin, thereby potentially minimizing skin complications. With respect to advanced penile cancer the International Penile Advanced Cancer Trial (InPACT) may provide critical evidence for how such patients should be treated in the future.1 We hope to learn 1) what the role of surgery alone is in this disease setting 2) if combining chemotherapy or chemoradiotherapy with surgery improves outcome and 3) which of the latter two regimens provides superior outcomes or at least produces less adverse side effects. This is an international trial. It's the first one of its type. I'm glad to be a co-leader on this trial and help direct the course of the field with respect to a trial like this. The trial is currently actively accruing, and we had to accrue 200 patients from international sites

What is the urologist’s role in destigmatizing penile cancer?

The urologist's role, first of all, is recognizing that when someone has a lesion on the penis, doesn't respond to presumed therapy for benign conditions, prompt biopsy should be performed in order to determine if penile cancer is present.

It is very reasonable to refer these patients to regional centers that have more experience early [on] so that the patient can be moved down the pathway to get the most appropriate care.

Following guideline-based management, and early referral (as appropriate) to experienced centers are some of the key things.

When we look at penile squamous carcinoma about 50% are caused by human papilloma virus. We now have effective vaccines for common human papilloma virus strains that affect the genitalia. So, broadly speaking, if we have a vaccine that can inhibit human papilloma virus, which is responsible for causing 50% of the penile cancer [and] almost 80% to 90% of cervical cancer, oropharyngeal cancer, vulvar cancer (in a proportion), and anal cancer (in a proportion), then I think that we should embrace vaccination of our adolescents as a preventive strategy to reduce the incidence of all these HPV-related cancers to globally reduce cancer burden. As the [American Urological Association (AUA)] has done, we should get behind HPV vaccination.

Is there anything else you feel our audience should know about this topic?

One more thing under the innovation category that it is available for selected men who have lost the penis due to cancer is phallic reconstruction. The ability to replace the penis using advanced plastic surgical techniques, and vascularized myocutaneous flaps from the forearm or the thigh now exists. This is often indicated in healthier patients who are at least 2 years out from prior treatment with a good long-term prognosis.


1. Canter DJ, Nicholson S, Watkin N, et al; InPACT Executive Committee. The international penile advanced cancer trial (InPACT): Rationale and current status. Euro Urol Focus. 2019 Sep;5(5):706-709. Epub 2019 Jun 1. doi: 10.1016/j.euf.2019.05.010.

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