David Cohan, a 34-year-old senior analyst at a Boston real estate investment trust company, says he “never wanted to be the poster child for testicular cancer.”
“But if it will help to save some lives and turn my experience into something much more positive, I’d like to do this,” says Cohan.”This” is going public with his battle – so far, highly successful – with a cancer most men barely whisper about.
Compared to breast or prostate cancer, which together will strike more than half a million Americans this year, testicular cancer is uncommon. This year, 7,200 men will get it – the numbers have climbed slowly in recent years for unclear reasons – and 350 will die.
Yet cancer of the testes remains shrouded in fear, in part because it affects the sexual organs – though not sexual function – and in part because it strikes men in their prime. It is the most common cancer in men between 15 and 35.
Much of this fear could be dissipated, cancer specialists say, if men understood two things: How important – and easy – it is to perform monthly self-exams. And how curable testicular cancer usually is.
Overall, 90 percent of men with testicular cancer can be cured. If the cancer is caught early, the cure rate is 98 percent; if it is caught later, it’s about 85 percent.
As the National Cancer Institute puts it, “there are treatments for all patients with cancer of the testicle, and most patients can be cured with available treatments.”
Testicular cancer begins when something goes wrong in the DNA in one of the primordial germ cells – cells that every male is born with and which later develop into sperm.
Though scientists don’t fully understand what triggers the cancer, they know that while it can run in families, it usually doesn’t, says Dr. Philip Kantoff, director of genitourinary oncology at the Dana-Farber Cancer Institute.
Some suspect that it follows trauma to the testes, pesticide exposure, viral infections or use of the hormone DES (diethylstilbesterol) by the patient’s mother during pregnancy.
But the only clear, well-established risk is being born with an undescended testicle, a condition called cryptorchidism that raises the risk of cancer about fivefold – for unknown reasons.
Tumors can grow fast, sometimes doubling in two weeks. But usually, they arise in only one testicle. And typically they are one of two types: a seminoma, the most common kind, or a nonseminoma, a cancer with a mix of cell types.
For both types, the first step is surgical removal of the testicle. Although it might seem easiest to do this through the scrotum, surgeons fear that as they cut through several layers of tissue, cancer cells might spill into the scrotum.
So they make an incision in the groin, just below the pubic hair line, and squeeze the testicle up through a natural passageway, the inguinal canal, says Dr. Michael O’Donnell, director of urological laparoscopic surgery at Beth Israel Deaconess Medical Center.
If the cancer is a seminoma and there are no signs that it has spread (Stage I), the next step is radiation of lymph nodes in the abdomen to reduce the risk of recurrence if the cancer has spread undetected.
Most men need only 17 treatments over three weeks, says Dr. Carolyn Lamb, a radiation oncologist at Boston’s Joint Center for Radiation Therapy. Typically, she adds, there are few side effects such as nausea.
To preserve fertility, the healthy testicle is protected with a device patients jokingly call “the clamshell.”
“I lost all sense of modesty, every morning having people put my testicle in clamshells,” recalls David Cohan, who lives in Boston. “I had to laugh,” as the technician helped him the first morning. “I said, ‘Aren’t you going to buy me dinner first?’ “
With Stage I nonseminomas, tumors are less responsive to radiation, so the options are different.
One is surgery to remove 20 to 40 lymph nodes in the abdomen. This is a big procedure involving an incision that runs along the bottom of the ribs on one side and down to the lower abdomen.
Chemotherapy, usually three cycles, is another effective option for early nonseminoma, as is “watchful waiting” – frequent monitoring with chest X-rays, CT scans and blood tests. This process is rigorous, but finite – if the cancer is going to spread, it usually does so within two years of diagnosis.
For Stage II cancers – those that have spread to the lymph nodes – chemotherapy is the usual option, though radiation is used if the cancer is a seminoma and only a few nodes are affected.
For Stage III cancers – those that have spread to organs like the lungs or liver – chemotherapy, often in high doses, is used. Some men with advanced cancer also have bone marrow transplants.
While chemotherapy can damage a man’s fertility, this is usually temporary. Radiation does not usually affect fertilitiy. And surgery can cause retrograde ejaculation, which means that sperm is formed but does not exit the penis normally; this is a permanent problem but one that can sometimes be treated with drugs.
All of which is more than David Cohan ever wanted to know.
Like many men with testicular cancer, Cohan found his own lump, “a tiny bump that was probably smaller than a pea.” He went to his doctor, who sent him that day for an ultrasound.
“Within an hour and a half,” he says, “I went from just looking into it to finding out I had cancer.”
Then, as he talked with the surgeon about removing his testicle, he got another rude surprise. Like many men who have a testicle removed, he had decided he wanted it replaced by a silicone implant.
But the controversy over silicone breast implants for women has made manufacturers so gun shy there is now a shortage of testicular implants, forcing many men to go without.
In the end, Cohan’s doctor found one but until the last minute, Cohan says, “I thought I’d have to go to Switzerland to buy a testicle on the black market.” He had asked his brother to go with him and could already “see us in trench coats in a bar handing over cash.”
Six months after treatment, Cohan threw himself into a new challenge – training for the Boston-New York AIDS bike ride.
Proud and healthy, he rejoices in that second victory: “I did the ride and I raised $ 8,800.”
How to do a self-exam
The American Cancer Society recommends that all men perform a testicular self-exam at least once a month, preferably after a warm bath or shower, when scrotal skin is most relaxed.
Use both hands and gently roll each testicle between the thumbs and fingers. If you feel pain, this means you are pressing too hard.
A normal testicle is oval, somewhat firm, free of lumps and should feel smooth to the touch. Try not to confuse the epididymis (the soft tube-like structure at the back of the testis) with a tumor. But if you find an area of firmness or a small lump or nodule on the front or side of the testicle, have it checked promptly by a doctor.
For more information, call:
1-800-ACS-2345, American Cancer Society.
1-800-4-CANCER (1-800-422-6237), National Cancer Institute. (Or TTY, 1-800-332-8615)
Don’t delay acting, says one survivor
Peter Twombly, now 40 and the owner of a fish market in East Dennis on Cape Cod, was only 20 when he got testicular cancer.
He had just survived “the turbulent teenage years of rebellion and invulnerability,” he recalls, and had started to “calm down and join the human race. So I got kind of mad about this, mad at myself, even though I didn’t have anything to do with it.”
He had surgery, and then, because his cancer had metastasized to a spot near his aorta, he joined an aggressive chemotherapy protocol at the National Institutes of Health.
This meant getting up at 5 a.m. to fly to Bethesda, Md., for treatment every three weeks for a year and a half, a grueling regimen he would have quit, except for his mother’s urging.
Today, he says, he feels “fit as a fiddle.” He urges other men not to delay treatment for 10 months, as he did. “Don’t wait,” he says. “Have it treated right away. It’s not a death sentence to have treatment, but it is to ignore it.”