Sally Loring, 70, a retired volunteer for the historical society in Manchester-by-the-Sea, is one lucky lady.

Seven years ago, while on vacation in Australia and New Zealand, Loring knocked the head off a mole that she’d had for decades but that hadn’t been checked by a doctor for four years. The headless mole wouldn’t heal.When she got home, she saw a doctor, who gave her the grim news on Good Friday: Stage 4 melanoma, “as bad as it can get. . .” That night, she says, “I was in a choral group singing the Mozart Requiem. I couldn’t even croak it.”

She had surgery and other treatments, but the melanoma spread to her breast. Finally, in 1992, she tried interleukin-2, a then-experimental treatment, which helps significantly in about 20 percent of patients with advanced melanoma. Loring was one of them, and now has “almost forgotten it happened to me.”

Skin cancer – which includes melanoma and the far less aggressive basal and squamous cell carcinomas – is one of the most common and curable of all cancers – but only if it’s caught early.

Even melanoma, which will account for 7,300 of the 9,200 skin cancer deaths among Americans this year, is highly curable – more than 90 percent survival after five years – if detected while the tumor is still thin and localized.

The message is obvious: Have your skin checked regularly by a health care professional, preferably a dermatologist. It’s especially important if you have fair skin, lots of moles or a family history of skin cancer. If you call 1-800-227-2345 begin_of_the_skype_highlighting              1-800-227-2345      end_of_the_skype_highlighting this week, you can get a free skin check, thanks to a combined effort of the American Cancer Society and the American Academy of Dermatology.

You can keep a watchful eye on your own skin, too. Basal and squamous cell cancers, which together will strike 1 million Americans this year, usually start out looking like pale, waxlike, pearly nodules or red, scaly, sharply outlined patches.

Melanomas often start out as small, mole-like growths that grow in size and may change color. They can be hard to see yourself because they often appear on the back – and sometimes pop up even on areas of the body never touched by sunlight.

In fact, dangerous moles, or atypical nevi, can fool all but the most trained eyes, says Dr. Richard J. Sharpe, a dermatologist in private practice in Gloucester and Hamilton.

Last fall, Dottie Lucas, a Gloucester woman in her mid-50s, asked her nurse practitioner to look at a “pimple-like thing” on her calf. The nurse thought it was nothing.

Last month, when Lucas went to see Sharpe for something else, he offered a skin check. The “pimple-like thing” was melanoma.

If you do get diagnosed with skin cancer, don’t panic.

If it’s basal cell, remember that “basal cells are not lethal,” says Dr. Arthur Sober, associate chief of dermatology at Massachusetts General Hospital. Over the last 70 years, a mere 400 people have died from basal cell cancer worldwide. Even so, it pays to get basal cell cancers treated quickly – usually with surgery – because they can destroy tissues such as eyelids, parts of the nose and ears, he says.

Squamous cell cancers are less common than basal cell cancers, but more lethal, causing 1,500 deaths a year in the US. Like basal cell cancers, they are usually treated with surgery. For both basal and squamous cell cancers, cure is “highly likely if detected and treated early,” says the cancer society.

But the biggest payoff from regular skin checks is catching melanoma when it, too, is early and curable. Its incidence has been rising sharply, by about 4 percent a year since 1973.

If a melanoma is thin (less than 1/16th of an inch deep) and hasn’t spread, it’s Stage I and the chances of surviving at least five years are more than 90 percent. If it’s Stage II (thicker but still localized), five year survival is 65 percent.

If the melanoma has spread to nearby lymph nodes (Stage III), the survival rate is 25 to 50 percent at five years, though treatment involves not just surgery to remove the tumor but often high doses of a drug called alpha interferon. In 1996, a major study showed that interferon clearly boosts survival for Stage III patients, says Dr. Robert Soiffer, a medical oncologist at Boston’s Dana-Farber Cancer Institute.

Even if you, like Sally Loring, are diagnosed with Stage IV melanoma, there are new options. Typically, these melanomas have caused lumps in the skin and have spread to distant lymph nodes or organs like the brain, bone, lungs or liver.

In January, interleukin-2, the treatment Loring had, was approved for Stage IV melanoma. Unlike chemotherapy, which directly poisons cancer cells, this drug seems to activate the immune system, making the body better able to recognize and fight tumor cells, says Dr. Michael Atkins, director of melanoma program at Beth Israel Deaconess Medical Center.

Chemotherapy – a drug called DTIC – also helps 20 percent of patients with advanced melanoma. Some patients may be helped by a combination of chemotherapy, interleukin-2 and interferon, which probably acts chiefly by boosting the immune system.

But most exciting, researchers say, are the new, experimental melanoma vaccines. Unlike regular vaccines that prevent disease, these vaccines, under intense study for the last five years, are designed to boost immunity in people who are already sick.

Several of these vaccines use small bits of protein from melanoma cells – sometimes from the patient himself, sometimes from other patients – to boost immune response. Another vaccine, under study at MGH and Dana-Farber, contains a gene for a natural immune-booster called GM-CSF as well. Still other vaccines in combination with interferon and interleukin-2 are being tested at the National Cancer Institute and Beth Israel.

So far, says Soiffer, a number of these vaccines have been shown to boost immune function considerably. But it remains to be seen whether this truly shrinks tumors or prolongs survival.

What is clear is that prevention is the key for skin cancer. Between 85 and 95 percent of basal and squamous cell cancers are linked to sun exposure, says Dr. Howard Koh, the Massachusetts public health commissioner, who is also a dermatologist and a medical oncologist.

That means you should limit sun exposure and use sunscreens with SPF, or sun protection factor, of 15 or higher. Sunscreens with an SPF of 15 block 92.5 percent of ultraviolet B light (the wavelength that causes sunburns); an SPF of 30 increases this slightly, to 96.3 percent. Scientists now think ultraviolet A light may also trigger cancer, and some sunscreens now protect against UV-A as well.

Sunlight may be less tightly linked to melanoma, though it is still thought to cause about 70 percent of cases. Scientists disagree on how well sunscreens protect against melanoma.

In February, researchers at a meeting of the American Association for the Advancement of Science reported that ten studies have looked at sunscreens and melanoma. Three studies found no link, two found sunscreens may be protective and five suggested melanoma risk may be increased among sunscreen users.

But if that’s true, it may be because people who rely most on sunscreens are those who are fair-skinned or are genetically at higher risk. Fair-skinned people who burn easily are two to three times more likely than darker people to get melanoma. People with many moles are at 6-to-10 times higher risk.

And since stronger sunscreens – with an SPF of 15 or higher – have only been available since the mid-1980s and melanoma can take years to develop, the protective value of sunscreens may simply have not shown up yet in epidemiological studies.

So dermatologists recommend “safe sun,” that is, wearing protective clothing, minimizing sun exposure between 10 a.m .and 3 p.m., using sunscreens and avoiding excess exposure, even with sunscreens. And this may be especially true for kids. Although studies are mixed, some research suggests that bad childhood sunburns are linked to melanoma later in life.

The bottom line, as Koh puts it, is simple: “Melanoma is unique among cancers in that it is visible. This is a cancer where literally everybody can participate in early detection.”

THE ABCD’s OF CHECKING MOLES FOR MELANOMA

PLEASE SEE MICROFILM FOR CHART DATA GLOBE STAFF CHART

Screenings

To learn where you can get a free skin cancer screening, call 800-227-2345 begin_of_the_skype_highlighting              800-227-2345      end_of_the_skype_highlighting, through May 8. If you are told that a screening is not available in your state, call your state dermatological society or 1-847-330-0101 begin_of_the_skype_highlighting              1-847-330-0101      end_of_the_skype_highlighting X394. The free screenings are a joint effort by the American Cancer Society and the American Academy of Dermatology.

It is still perhaps the most dreaded diagnosis but methods of treating it are improving.

Jordan Fieldman was a 23-year-old first year student at Harvard Medical School when he was told that a brain tumor would probably kill him before the year was out.

For five years, he’d had “horrendous headaches” that were written off as stress, he says. He’d also had trouble seeing what was on the blackboard since his undergraduate days as a neuroscience major at Harvard.But the student health plan, he says, kept referring him to an optometrist, who told him to keep using his glasses.

So it wasn’t until medical school that he saw an ophthalmologist, an eye doctor, who detected a brain tumor and rushed Fieldman to the hospital in an ambulance. He underwent a 15-hour operation to remove the tumor from the pineal gland in the middle of his brain. The surgery left him temporarily blind.

Still, Fieldman kept going to class – “If I went home, I’d be a cancer patient; if I stayed in school, I’d be a medical student who happens to disappear for treatment” – while going through nine months of experimental chemotherapy and radiation.

He was given “nonexistent” odds of living five years, but he beat those odds. He is 31 now, a doctor at the Berkshire Medical Center in Pittsfield.

Despite such encouraging stories, there is perhaps no diagnosis more frightening than a brain tumor, and according to The Brain Tumor Society, a national group based in Boston, it is a diagnosis that roughly 100,000 Americans will hear every year.

Worse still, say some experts and activists, the incidence of such tumors may be on the rise, though this is a hotly disputed point. There is consensus, though, that in recent years, there have been significant advances in treatment.

The fear that incidence may be rising has galvanized activists. Last week, more than 150 of them met with members of Congress to lobby for more funding. And this Saturday, hundreds of patients, family members and health professionals are expected to gather at a Boston symposium to discuss the latest research on treatment.

Most tumors in the brain are cancers that spread there from other organs in the body. But every year, about 34,000 people are diagnosed with “primary” tumors that arise in the brain itself, according to the Central Brain Tumor Registry of the United States, the only organization that keeps track of both malignant and benign brain tumors.

Even benign tumors can be life threatening, depending on their location. Slightly more than half of all primary tumors are malignant.

According to the National Cancer Institute, which keeps track only of malignant tumors, the incidence of primary brain tumors rose 18.5 percent between 1973 and 1994. The biggest increases seem to be at the extremes of life – a 57.9 percent increase in people over 65, and a 35 percent jump in children from birth to 14.

Other researchers, however, question whether the rate is really going up, or it’s just that detection is better.

To be sure, brain cancer is still rare. In children, it strikes 3.3 in every 100,000 by age 14. But researchers are worried because the incidence seems to be growing at 1.8 percent a year, faster than childhood leukemias – and no one knows why, says NCI epidemiologist Martha Linet.

But the debate continues over whether that increase is real.

“I think the incidence is probably up,” says Dr. Lisa DeAngelis, chairman of the neurology department at Memorial Sloan-Kettering Cancer Center in New York. “It doesn’t seem to be just because of better detection.”

At the Massachusetts General Hospital brain tumor center, however, Dr. John Henson, a neuro-oncologist, disagrees: “I do not think it is going up in older people, and I don’t think it’s going up in children.”

When researchers at the Mayo Clinic reviewed 40 years’ worth of patient records in 1995, they concluded that the apparent increase in brain tumors was attributable to better diagnosis. In older people, for instance, better imaging technologies, like CT and MRI scans, now pick up tumors whose symptoms were once attributed to strokes.

Henson does believe, though, that one type of tumor – brain lymphoma – may be on the rise. This is a rare cancer, he says, but new cases have tripled in the last 20 years, even in people with healthy immune systems. (Most lymphomas affect lymph glands and immune cells thoughout the body, but lymphomas that arise in the brain seem not to affect tissues elsewhere.)

The positive news in all this is that treatments – and survival rates – for primary brain tumors have been improving steadily, especially for kids.

In 1973, says Linet of NCI, the chance that a child under 19 with a malignant brain tumor would survive five years was 54 percent. Today, it’s 73 percent, she says, “a big change.”

And for a tumor called a medulloblastoma, five-year survival is now 80 to 85 percent, says Dr. Roger Packer, chairman of neurology at Children’s National Medical Center in Washington, D.C. A generation ago, he says, it was 30 to 40 percent.

One of those whose chances now look rosier is nine-year old Ellen O’Brien of Melrose. Diagnosed the day after her fifth birthday, Ellen has had three surgeries, chemotherapy and radiation. At one point, in the belief there was no hope for survival, she was sent home for hospice care.

There were some “horrendous” times, like when Ellen was on high-dose steroids, says her mother, Kate. “The child was psychotic. She tried to kill herself.” But Ellen has been fine for two years, and her mom says, “Things are looking great.”

For adults, unfortunately, the news is not quite as encouraging, notwithstanding the miracle of Jordan Fieldman, the young doctor in the Berkshires. Currently, the overall five-year survival for adults with malignant brain tumors is 30 percent, NCI figures show. For very aggressive tumors, the one-year survival is only 50 percent.

Still, there are reasons to hope.

One is that doctors now pay more attention to the quality of life of brain tumor patients, a key issue because treatments historically destroyed so many healthy parts of the brain that even if the tumor was removed, people were left with severe handicaps, such as blindness.

Another is that there have been “tremendous advances in ways of delivering radiation,” says Dr. Jay Loeffler, director of the Northeast Proton Therapy Center at MGH and head of the brain tumor center at Brigham and Women’s Hospital.

One thing that has helped is stereotaxis, a process in which doctors screw a metal frame onto the patient’s skull and then do CT or MRI scans, using markers on the frame as reference points. The result is a three-dimensional map showing where the tumor is. This allows doctors to do “conformal” radiation, that is, to match radiation precisely to the shape of the tumor.

“If the tumor looks like an aligator,” says Loeffler, “we can make the radiation look like that, too.”

Doctors use stereotaxis to guide the radiation, which can either be given in daily doses over six or seven weeks or in a single big dose, a technique called “stereotactic radiosurgery.”

Today, there are even noninvasive stereotactic frames in some hospitals. Instead of screwing a frame to the head, doctors insert a plate into the mouth and use the upper jaw – which doesn’t move – as the fixed point to guide radiation.

Better types of radiation are helping, too. With standard radiation beams, energy is released as it travels through tissues. But at a few centers, doctors now use proton beams, which travel to a specified spot, then release all their energy there, blasting the tumor and minimizing damage to other areas.

Surgery has improved, too. Instead of opening the whole skull to see if a tumor is present, doctors can insert a fine needle, guided by stereotaxis and the scans. Surgeons can also remove some whole tumors this way, too.

And at Brigham and Women’s – so far the only center to do so – doctors now remove some tumors with an MRI scanner in the operating room, getting constant visual clues as they go along.

Other treatments are also promising, including drugs to block new blood vessel growth around tumors, an idea pioneered by Dr. Judah Folkman, director of surgical research at Children’s Hospital in Boston.

Among these anti-angiogenic drugs is the once-reviled sedative thalidomide, which was banned for causing severe birth defects.

Recently, an advisory board to the US Food and Drug Administration recommended its approval for treating a side effect of leprosy. Even if it is approved, however, its for other conditions may be limited.

At the Dana Farber Cancer Institute, Dr. Howard Fine, director of the Center for Neuro-oncology, has been studying both thalidomide and a blood vessel blocker called TNP470, and he says he’s encouraged by the early results.

Fine and others are now trying, in animal studies, to combine blood vessel blockers with gene therapy, a process in which altered viruses that secrete anti-angiogenesis chemicals are injected into tumors.

Other researchers are tinkering with ways to penetrate the “blood-brain barrier” to get more chemotherapy into the brain. This barrier is a unique feature of blood vessels in the brain that makes them less leaky. That protects the brain against toxic chemicals but makes it harder to get useful drugs in.

Still others are working on drugs to make tumor cells evolve from more to less aggressive and drugs to boost immune response.

And then there’s faith in something beyond science.

“When Western medicine gives you zero percent survival, you start exploring other options,” says Jordan Fieldman, who spent six months living with Tibetan monks in India – before his diagnosis. He still meditates every day.

“I was trained in the sciences,” he says. “It would have been easy for me to obey the odds and do what it says in the textbooks. But I had faith I could overcome it.”

“The biggest gift,” he says, “is a far deeper respect and appreciation for life in all its subtle manifestations.”

 

1.  To learn more

An all-day symposium on adult and pediatric brain tumors called “New Frontiers ’97” will take place at the Sheraton Boston Hotel and Towers Saturday from 8 a.m.-6 p.m.

Admission is $ 30 per person, plus $ 25 for each additional family member. Scholarships are available by calling The Brain Tumor Society at 1-800-770-8287 begin_of_the_skype_highlighting              1-800-770-8287      end_of_the_skype_highlighting or 617-783-0340 begin_of_the_skype_highlighting              617-783-0340      end_of_the_skype_highlighting.

You can also sign up via the Internet, at www.tbts.org.

For more information on brain tumors, call:

• ]The American Brain Tumor Association, 1-800-886-2282 begin_of_the_skype_highlighting              1-800-886-2282      end_of_the_skype_highlighting.

• The National Brain Tumor Foundation, 1-800-934-CURE begin_of_the_skype_highlighting              1-800-934-CURE      end_of_the_skype_highlighting, or 1-800-934-2873 begin_of_the_skype_highlighting              1-800-934-2873      end_of_the_skype_highlighting.

2.  Searching for causes

Fears that the incidence of primary brain tumors is rising have led to a search for factors that might account for this, especially in children. Researchers have been able to rule out some hypotheses and are still exploring others.

Exposure to high doses of ionizing radiation, the kind produced by atomic bombs and X-ray treatments (but not diagnostic X-rays), have been linked to brain tumors in both children and adults, says Dr. Martha Linet, an epidemiologist at the National Cancer Institute. But nonionizing radiation, the kind that comes from television sets, power lines, video display terminals and microwave ovens, has not been shown in studies to be a cause, says Linet.

Diet may play a role. Research shows that children born to women who ate lots of fruits and vegetables while they were pregnant are protected against some types of primary brain tumors in childhood.

You might think, to hear about Dr. Wendy S. Harpham’s life, that it’s perfectly obvious why she’s always exhausted.

For one thing, she and her husband run a very busy household in Dallas with three kids, ages 8, 10, and 12.For another, she’s written four books on cancer since 1992 – much easier, she says, than the 15-hour days she used to put in as an internist in solo practice. She’s also in constant demand on the national lecture circuit.

But the real reason that Harpham, 42, is always tired is that she suffers from “post cancer fatigue,” the result of a seven-year battle with lymphoma that forced her to give up her medical practice.

Post cancer fatigue, as she defines it, is fatigue that persists after treatment is over, all known causes of the fatigue have resolved and the patient is in remission. Everyone agrees it’s common, though no one knows for sure how many of the eight million Americans who’ve had cancer suffer from it.

In fact, doctors don’t know much about cancer fatigue, period. That goes for the kind that accompanies debilitating treatments like chemotherapy or radiation as well as the kind that lingers on afterward.

But patients like Harpham do. Once, during treatment, her fatigue was so draining that she remembers sitting at the table thinking, “Oh, my gosh. I have to lift a fork.”

Now, 18 months after her last treatment, she is still so tired she is “always calculating how much energy something I want to do will take, because I always run out.”

Recently, however, a group of cancer specialists and patient advocates called the Fatigue Coalition has begun trying to understand why cancer-related fatigue is so common and, equally important, why so many doctors still don’t take it seriously.

According to a recent coalition survey of 419 cancer patients, 200 caregivers and 197 oncologists, fatigue, not pain, was the patients’ most common complaint. Half were more than a year post-treatment.

Fatigue, the survey also showed, is the problem most likely to chip away at quality of life. Nearly 80 percent of patients experienced fatigue at some point, and more than half said they felt it on most days, if not every day. Many said fatigue affected them to the point where they had trouble working, walking any distance, being intimate with a partner, or meeting the needs of family and friends.

Yet perhaps the most striking finding is this: Most people with cancer think fatigue is something they must put up with.

Only 31 percent even mention it to their doctors on every visit. And when they do, doctors barely hear it: Only five percent of oncologists think patients mention it that often.

To many doctors, fatigue “just doesn’t register on the radar screen as an acute or urgent problem, but for the person with cancer, it’s often the dominating problem,” says Dr. Jerome Groopman, chief of experimental medicine at the Beth Israel Deaconess Medical Center and a member of the Fatigue Coalition.

“When a cancer patient tells a doctor he’s tired, the doctor almost shrugs his shoulders. That’s not a satisfactory answer.”

Especially since some – though by no means all – of the reasons for cancer fatigue can be reversed.

For instance, anemia, low levels of oxygen-carrying hemoglobin in the blood, can often be treated with transfusions or a drug called erythropoietin. Thyroid deficiency, which can occur if radiation to the chest or neck damages the thyroid gland, can also be remedied with medication.

So can the aftereffects of steroid drugs. When people take steroids for long periods and then stop, they often get tired if their adrenal glands can no longer produce enough cortisol. Medication to replace the missing cortisol can help.

Good diet – see a nutritionist if you think you’re not eating right – can also help, as can getting enough rest, even scheduling naps during a busy day.

If Harpham skips her daily nap, “my kids can tell in a minute,” she says. “I make mistakes and I’m not as nice or patient. I’ll forget to do something they asked me to do. I cry more easily. We have all learned that Mom’s getting a nap is an important part of the day.”

Anxiety and depression, which can also lead to fatigue, are also highly treatable with counselling or medication.

Paradoxically, exercise also seems to help people who may feel almost too tired to move, probably by fighting the loss of conditioning that comes from too much lying around.

There is a caveat here, warns Harpham: You have to keep “listening to your body,” because the same amount of exercise that can boost energy one day may sap it the next. But overall, moderate exercise is probably a boon.

Last week, German researchers reported in the journal Cancer that exercise, not rest, was more likely to restore vigor in patients who had undergone high-dose chemotherapy and stem cell transplantation, which is similar to bone marrow transplant.

Although the study involved only 32 patients and had some methodological weaknesses, the results are striking and important, says Dr. Harmon Eyre, executive vice president for research and cancer control at the American Cancer Society.

“Twenty-five years ago, we had people recuperating from surgery lie around in bed. Now we have learned that if we get them up . ., you get them out of the hospital” sooner. The German study suggests exercise may be similarly beneficial to people with cancer.

Don’t panic, we’re not talking marathons here. In the German study, the exercisers started off gingerly – three minutes on the treadmill, five times a day, then worked up to 30 minutes per session after six weeks. By then, though, they were in far better shape than the non-exercisers – they lasted longer on treadmill tests and their hemoglobin counts were higher.

Still, there is much that researchers do not understand.

Fatigue “is clearly related to low white blood cell counts,” says Dr. Nicholas Vogelzang, an oncologist at the University of Chicago and member of the Fatigue Coalition.

But no one really knows why. Perhaps the body’s hormone balance gets out of whack. Perhaps the weakened immune system is using lots of energy trying to fight infections.

Or perhaps substances like TNF, or tumor necrosis factor, released by white blood cells, cause the fatigue.

In addition, people with cancer don’t metabolize the calories they eat efficiently. “It’s very clear that cancer patients don’t handle nutrients in the normal fashion,” says Eyre.

Despite all the unanswered questions, says Harpham, it’s crucial for patients who have fatigue to tell their doctors about it – and for doctors to listen.

And when healthy friends or colleagues say “I’m tired, too,” she suggests telling them, gently, that they really don’t understand at all.

Cancer surivors with fatigue, she says, “never feel rested. And if you look great, you have to keep explaining yourself, because you can’t perform the way someone with normal energy can.”

Where to learn more

If you want to read more about cancer fatigue, you might try the following books by Dr. Wendy S. Harpham:

• When a Parent Has Cancer: A Guide to Caring for Your Children; and Becky and the Worry Cup (two-volume set); HarperCollins; 1997.

• After Cancer: A Guide to Your New Life. W.W. Norton, 1994; paperback edition, HarperPerennial; 1995.

• Diagnosis: Cancer. Your Guide Through the First Few Months; W.W. Norton; 1992.

• You may also want to read:

• Taking Control of Fatigue, a free booklet, video and daily journal; available through the American Cancer Society, 1-800-227-2345 begin_of_the_skype_highlighting              1-800-227-2345      end_of_the_skype_highlighting.

• Everyone’s Guide to Cancer Therapy; by Malin Dollinger, M.D., Ernest H. Rosenbaum, M.D. and Greg Cable; Somerville House Books.

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.”