Penile cancer can be a deeply personal and devastating disease, but catching it early can mean more tolerable treatment.
At 44, John D. Edwards was slowing down from what he describes as a life of sex, drugs and rock ’n’ roll when he received a diagnosis of penile cancer in 1996.
“I had just gotten divorced, my life had calmed down a bit and I started to look after myself a bit better,” says Edwards, now 67, an artist who lives and works outside London, England. “That is how I first noticed that I wasn’t feeling so good.”
During a bath one day, Edwards noticed a lump in his groin, which prompted him to see his general practitioner, who referred him to a specialist. A biopsy of the lump, which was a lymph node, revealed cancer, but its source remained a mystery.
“When I met with a specialist, he asked me if I had trouble pulling back the foreskin of my penis, and although I hadn’t really thought about it much before, I realized that, yes, I did,” Edwards recalls.
This condition, called phimosis, in which the foreskin becomes tight and difficult to retract, is a known risk factor for penile cancer. “With phimosis, the foreskin is stuck down over the head of the penis, and that contributes to a poor hygiene situation and the possible buildup of smegma, a substance that can develop under the foreskin,” says Dr. Kirsten L. Greene, a professor of clinical urology at the University of California, San Francisco.
Edwards’ specialist recommended that he undergo a partial circumcision to reveal the head, or glans, of the penis. The procedure revealed a tiny area of the skin that turned out to be penile cancer.
The presentation and diagnosis of Edwards’ cancer was typical of this rare disease type, which is identified in about 2,080 men in the United States each year.
“The population of men in whom it is most commonly diagnosed are men who are not circumcised,” Greene says. In countries where circumcision is more common, like the United States and Israel, rates of penile cancer are lower. In countries with economic disparity or low rates of circumcision, penile cancers can account for as many as 10% of cancers in men.
Human papillomavirus, commonly known as HPV, is also thought to contribute to about half of penile cancers. The 150 strains of the virus can cause different types of warts or growths. Men with penile cancer usually have HPV 16 and 18, types that can be prevented via vaccine and are associated with cervical and oropharyngeal cancers.
“Regrettably, because penile cancer is so uncommon, little research has been done on its associations with HPV compared with a cancer like cervical cancer,” says Dr. Viraj Master, professor of urology at Emory University School of Medicine in Atlanta.
The one unusual aspect of Edwards’ diagnosis was his age: early 40s. The average age of diagnosis is 68.
Other known risk factors include chronic inflammation, obesity, HIV/AIDS, tobacco use and light treatments for chronic psoriasis.
EARLY DIAGNOSIS = BETTER PROGNOSIS
Just over half of penile cancers are diagnosed at stage 1, when the cancer is confined to the tissue just below the top layer of the skin and has not spread to nearby lymph nodes.
“Stage 1 is very curable, and patients tend to do very well,” Master says. About 85% of men who receive a diagnosis of stage 1 disease are alive five years later.
In stage 2 disease, the cancer has begun to spread to nearby blood vessels or nerves. In stage 3, it has reached nearby lymph nodes. Stage 4 disease involves nearby or distant tissues or lymph nodes.
“All too frequently, we see men with penile cancer present with late disease,” Master says. “Often, these men may be ashamed to show anyone their penis because of concerns that it will be viewed as abnormal. In other cases, men may have poor health literacy and are not aware that anything is wrong.”
Once the disease has spread to the lymph nodes, survival depends on aggressive treatment, says Dr. Lance C. Pagliaro, a medical oncologist with Mayo Clinic in Rochester, Minnesota. At these later stages, the treatment team expands beyond urologists like Greene and Master to include radiation or medical oncologists such as Pagliaro.
“What is distinctly uncommon in penile cancer, though, is that less than 3% of cases in the U.S. will be diagnosed after the disease has spread to other organs,” Pagliaro says.
Key to early diagnosis is knowing the signs and symptoms. According to Pagliaro, it is a misperception that these should be obvious to men or their partners. Penile cancer may present as a lump or an ulcer or as a change in the color or thickness of skin on the penis. Men may notice a rash, small bumps or flat, bluish-brown growths. “These can often be mistaken for a fungal infection, an injury or a local irritation,” Pagliaro says.
Men may also notice swelling of the penis, lumps in the groin area, or a smelly discharge or blood under the foreskin.
NONINVASIVE, SOMEWHAT ELUSIVE OPTIONS
Patients with penile cancer who are interested in nonsurgical approaches may be able to undergo radiotherapy, according to Pagliaro. Although the medical community has been slow to adopt this option, Pagliaro says that centers with teams devoted to treating penile cancer may offer it as part of multidisciplinary therapy.
Ronald Stewart, 87, underwent a circumcision at age 70 to diagnose his penile cancer and was prescribed radiation. Between treatment for prior prostate cancer, its recurrence and his penile cancer, Stewart estimates that he has received close to 95 rounds of radiation. He says he has never experienced side effects: “I’ve had no pain from it whatsoever.”
Edwards says his experience with radiation was quite painful. “The skin was sort of burnt away, and then, incredibly, it came back like new,” he recalls.
In the years that followed, Edwards experienced ongoing issues, including extreme fatigue and the buildup of fluid in the lymph nodes in his groin. Called lymphedema, this is a common side effect of radiation.
Chemotherapy’s role has also been better defined during the past decade, but this treatment remains underused in penile cancer. Topical chemotherapy can be used in men who have cancer in just the top layers of the skin, called carcinoma in situ. Systemic chemotherapy, which travels throughout the body, is given for more advanced cancers that have spread to the lymph nodes or distant organs, Pagliaro says.
“There are chemotherapy combinations that succeed in reducing the size of lymph nodes and, when combined with surgery, can improve five-year survival rates,” Pagliaro says. “Chemotherapy at lower doses can be given at the same time as radiotherapy, and (although) there are no dedicated clinical trials showing the benefit of that approach, it is being increasingly employed at specialty and community centers.”
In some cases, systemic chemotherapy can be given in an attempt to shrink a tumor prior to surgery. Researchers are studying whether chemotherapy after surgery can help prevent recurrence and improve survival.
A RANGE OF SURGICAL SOLUTIONS
Surgery is the primary treatment for penile cancer at any stage but especially for large localized tumors, according to Greene. If the cancer is confined to the foreskin, circumcision might be all that is needed. In a simple excision, it may be possible to cut off just a small piece of the penis, such as the edge of the glans, and preserve function and anatomy, Greene says.
When Edwards’ penile cancer returned in 2012, his specialist recommended a glansectomy to get rid of the cancer’s primary source. This required removing a large amount of the skin on the head of the penis, followed by a skin graft to repair the area.
If the cancer has grown deeply inside the penis, a partial or total removal of the penis, called a penectomy, may be necessary. “Systemic chemotherapy can be used to try to shrink the cancer to allow us to do a partial penectomy,” Greene says. “With a partial penectomy procedure, only a part of the penis is removed, which can change the shape of the penis or the length.”
This procedure leaves sensation unchanged, Greene says. “Men can still have intercourse, orgasm and ejaculate normally, depending upon how much length is preserved,” he says. “The exception to this is skin grafts or flaps, which would have little to no sensation.”
When Stewart’s penile cancer returned about eight years after his radiation, he was referred to Master at Emory. When the recurrence showed signs of growth, Master scheduled Stewart for a minor surgery to remove the cancer.
“Between when the surgery was scheduled and the day of the surgery, the cancer became quite aggressive,” Stewart recalls. Master then explained that the best course of action was a total penectomy.
“With a penile amputation, for the patient, it is almost equivalent to having a limb amputated,” Master says. “Depending on the length of the phallus, the man may not have length left to support traditional sexual intercourse and will no longer be able to void urine in a standing position.”
With this procedure, the entire penis is removed, sometimes including roots located in the pelvis. A new opening to drain urine is created in the area behind the scrotum.
“When Dr. Master told me that they might have to take everything, my words to him were: ‘If it is ‘him’ or me, take ‘him,’” Stewart says. Stewart acknowledges that his age helped lessen the impact; a diagnosis earlier in his life would have been much more difficult.
Men who undergo partial or total penectomy do have options for reconstruction. “In some cases, a skin graft can be used to make the glans penis appear more natural,” Greene says. “Sometimes the suspensory ligament of the penis can be cut to gain extra length.”
Another possibility: penile reconstruction via phalloplasty, the technique used in people undergoing gender reassignment surgery. “Here, the idea would be to try to make it cosmetically look as though the penis is there, but it is not going to look exactly the same as a naturally derived penis,” Greene says. “The goal is more often to let men stand to urinate, and if a prosthesis is implanted, sexual intercourse could be possible, as well.”
Some centers also are looking at penile transplantation as an experimental option, Greene says. The world’s first penile transplant was performed in 2018, but the procedure is still highly experimental, Greene says. “In either case, we would want a man to be cancer-free for enough time to be certain that the cancer is gone before undertaking a complex reconstruction,” Greene says.
LIFE AFTER CANCER
An artist by trade (johndedwards.com), Edwards continues to put his experience on canvas in a series of paintings depicting his life with cancer. He also wrote a book, “How Cancer Saved My Life,” which he plans to republish to include updates about his recurrence.
Edwards says he has tried to live with his cancer honestly and accept that there’s no going back to his old life. While the past two decades have been difficult, he says, he has no doubt about the power, value and joy that comes from externalizing his experience through his art.
“My approach has been to talk to everybody about this as much as possible,” says Edwards, who shares his message through exhibitions, talks and workshops in galleries, art centers and hospitals. Five of the professionals who treated him have since taken up an art form.
Stewart, also originally from the United Kingdom but now a longtime resident of the Atlanta suburbs, says his British sense of humor has helped him deal with the diagnosis. “It is very hard, but you have to look at it in a positive light,” he says. “I am still me.”
As an example, Stewart shares a story about a recent early morning trip to the bathroom, where years of habit led him to stand in front of the toilet. “The joke’s on me, because all of a sudden my feet are getting soaking wet,” Stewart says.
Like Edwards, Stewart keeps busy with activities he loves, like traveling and volunteering at a local hospice. “My advice for people going through this is to try not to get depressed,” Stewart says. “Surround yourself with upbeat people who don’t give sympathy but, instead, give you the support you need.”