Curtis Pesmen

Right after my stage 3 colon cancer diagnosis, something seemed odd: I was advised to have an immediate, voluntary surgery in order to get chemotherapy. But my port-a-cath implant surgery—also designed to help me avoid countless needle sticks&mdash;doesn’t seem odd today, looking back cancer-free, seven years after treatment. 

Basically, I consented to have a port-a-cath, a small, round (about 1.5 inches in diameter) intravenous drug reservoir and thin catheter tube placed into my chest to streamline both chemotherapy delivery and many blood draws over the course of nine months. Breast cancer patients who have mastectomies and lymph node removal also benefit from ports, as access to the inside of their arms on the operating side(s) may be limited.

The theory was that I’d have less pain and fewer vein-related complications. All proved true. Plus, unlike my planned tumor removal, it was outpatient surgery. The port stayed in me for one year post-treatment—shrouded by my chest hair&mdash;just in case of recurrence.

Today, port implants in the chest or along the inside arm seem almost routine following myriad cancer diagnoses. Both surgeons and interventional radiologists are now trained to perform the surgery. Radiologists are newer to the field, but their implants may be guided more precisely by pre-operative imaging.

Yet patients and their caregivers don’t always realize there’s more to the port story than easier access for oncology nurses and treatment efficiency. Older patients and survivors who face multiple rounds of intravenous therapy may over time suffer hardened veins, which complicates or even prevents traditional needle-catheter infusions of anti-cancer drugs, liquid nutrition, or antibiotics.

“Your [port] access is always there; without repeated needles, and without worrying about the nurse or CT tech not being able to ‘find’ a vein,’ ” says John Kaufman, MD, chief of vascular and interventional radiology at Dotter Interventional Institute at the Oregon Health & Science University in Portland.

Kaufman explains that many chemotherapy and targeted drug therapies follow a strict schedule; and if you return home after unsuccessful jabs one day—without a successful needle point-of-entry for treatment&mdash;that very schedule is jeopardized. “The port gives you tremendous security,” he says. “It’s meant to make a difficult time of your life easier.”  Also, some chemotherapy agents can cause tissue damage if they leak around the vein from a regular I.V. line, so a port avoids that risk as well.

Still, ports aren’t perfect, nor are they maintenance-free. They typically require flushing every four to six weeks with heparin solution, a quick and relatively painless procedure that helps to prevent blood clots. The devices can break on rare occasions, or more often contribute to swelling, excessive pain, or infection. If the device does break, surgery may be needed—never a risk-free proposition for those who have compromised immune systems during chemotherapy&mdash; but other methods may be available. One recent European study looked at 30 patients whose ports required corrections, as they had migrated or were incorrectly implanted. One patient’s port corrected itself, while doctors used radiological imaging to help reposition 27 other patients’ ports without surgery.

Though rare, the ports can also “flip” over, rupture, or fracture, leading to risk of chemotherapy leakage. “I’ve been doing these for 17 years, into the thousands,” says Kaufman, “and I’ve only seen two flips.” Fractures and infections are more common. To avoid unnerving port malfunctions, experts say it pays to be vigilant about the device’s limitations and side effects.

So the key question remains: What can you do, if you opt for a port, to minimize your risk of complications? These tricks of the trade can help with maintenance—plus help you avoid port removals:

 To prevent pain, apply prescription EMLA cream (lidocaine-prilocaine) over the port site prior to infusions. Before intravenous therapy, a sturdy needle still needs to be inserted through the skin into the port receptacle, so remember to apply it one hour before your appointment. If you forget the advance prep, ask for numbing spray, such as Hurricane, at the infusion center.

 Ask what the center’s schedule or process is for port flushing for maintenance. If you travel for weeks at a time, can a significant other be trained to perform the flush while away?

 In case of infection, antibiotics may be able to successfully treat and cure the infection without having surgery for port removal. Ask your team what experience they have with both.

 In breast cancer cases, ports are usually not added during lumpectomy or other initial breast surgery. “You wouldn’t know the staging or prognosis until after the pathology report,” says Allen Cohn, MD, medical oncologist at Rocky Mountain Cancer Centers in Denver. It may turn out, he says, that a port isn’t needed after all.

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A port can make intravenous chemotherapy easier on patients. 

The Ins and Outs of Ports

It’s not every day you hear cancer doctors cautioning each other to “back off.” But it happened at the 2008 annual meeting of the American Academy of Dermatology (AAD), where skin cancer doctors and dermatologic surgeons debated about possible overtreatment of nonmelanoma skin cancer.

In particular, they aired arguments over the “best” treatment of AKs, or actinic keratoses (also called solar keratoses), which develop after years of sun (over)exposure. These lesions appear one-at-a-time or in groups as rough, scaly, reddish or brown patches of sun-damaged skin that can, though rarely, turn into squamous cell carcinoma. What then: Surgery? Liquid nitrogen (cryotherapy)? Chemo-topical or other lotions? Combo treatments? Or even watchful waiting? All this, for something that’s not even cancer (yet)?

Still, over this there’s little debate: More than one million people will get skin cancer this year, projects the AAD. Of those, up to 80 percent will be basal cell carcinoma (or BCC, which doesn’t metastasize) and 16 percent or so will be squamous cell carcinoma (SCC), which can metastasize. (Another 4 percent will be melanoma, the most dangerous form of skin cancer, which can spread even when the lesion is small.)

People who have many AKs have about a 10 percent risk of developing SCC over their lifetime, which also means 90 percent of this subpopulation won’t suffer this cancer. Cancer patients and others on immunosuppressive drugs or treatments face much higher risk of developing AK-related or dangerous skin cancers. A cure is highly likely for basal cell and squamous cell cancers if detected and treated early, according to the American Cancer Society. For SCCs that metastasize, the five-year survival rate is less than 50 percent.

As patients get to know the family of treatments from which to choose for AKs and nonmelanoma skin cancers, the initial urge to “cut it out” may not be the most prudent course, dermatologists say.

“AKs can be overtreated in my opinion,” says Christopher Lum, MD, a dermato-pathologist at the John A. Burns School of Medicine at the University of Hawaii, “because these lesions can tend to be multi-focal—or part of a ‘field.’ ” When multiple sites on the skin are involved or affected, Dr. Lum explains, surgically (or cryosurgically) removing many at a time might inflict unnecessary pain and scarring.

In recent years, dermatologists have increased use of topical treatments, including an older drug, 5-FU (fluorouracil), dispensed as a kind of chemo-in-a-tube. In 2004, the cream Aldara (imiquimod) gained approval from the Food and Drug Administration for treating some AKs as well as superficial BCC.

Still, because topical creams take weeks to work and carry side effects such as redness, pain, swelling, and scabbing, those who develop numerous AKs may opt for surgery or cryosurgery, while remaining aggressive and alert.

“Skin cancer is like a weed,” says Michael Hadley, MD, assistant professor and specialist in dermatological surgery at University of Utah-Huntsman Cancer Institute in Salt Lake City. “It’s easy to pull off the top, but it’s essential to get all the roots in order to stave off potential recurrence,” which is not to say liquid treatments for AKs aren’t effective; just to point out a biological truth.

As for aggressive surgical treatment, “In order to get a clear margin, you can be ‘chasing’ for a long time,” adds Dr. Lum. “There are other, perhaps better ways to achieve the [desired] reduction effect.” A further choice for patients with AK is light therapy, or photodynamic therapy, which combines a somewhat new, two-step treatment. First, the doctor applies ALA, or aminolevulinic acid (different drugs may be used); next, after an “incubation” period, the doctor aims pulses of photodynamic (blue) light at the field via an applicator that stimulates the drug. Photodynamic therapy appears most effective for small nonmelanoma cancers or precancerous areas.

“Some actinic keratoses can resolve on their own, but they should be monitored every four months or so,” says Shawn Allen, MD, a Boulder, Colorado, dermatologist and Mohs-trained skin cancer surgeon. (Mohs surgery involves a specially trained dermatologist or surgeon removing thin slices of the cancerous area, one by one, and examining each slice under a microscope until no tumor cells remain.) “And cancer patients or others who are immuno-compromised should know that those who tend to develop a lot of AKs, or who develop squamous cells, can be facing a more threatening situation.”

Dermatologists attending the AAD meeting believe that while every patient has a right to decide how and when to treat precancers of the skin, they expressed concerns about how long some patients might opt to wait to treat.

It’s a new, but increasingly common dilemma in oncology: What’s the best course of action for so-called stage 0 disease? From superficial skin lesions to gynecological dysplasia, the jury is still out. But the treatment options keep coming.

Answers to the treatment debate for actinic keratosis, a precancerous growth on  the skin.

A Skin Cancer Conundrum: Are AKs Overtreated?

Brock Royer arrived at First Descents kayak camp in 2002 as a 22-year-old, happy-go-lucky kayak racing champ who wanted to share his skill at running river rapids with young adult cancer survivors — to provide thrills and healing lessons. Three years later Royer learned he had testicular cancer and morphed in a life-changing instant from camp counselor to scared student. 

“At first I was volunteering because I liked kayaking and the kids,” he says, adding that after the diagnosis, First Descents took on a whole new meaning — not just for him, but for his “kids,” too. Because as cool as it may have been before his diagnosis for First Descents campers to learn to kayak from a pro racer, now they found themselves sharing with Royer personal information beyond blood counts and hair loss, toward bigger questions about life. Royer was no longer “just a counselor.” Now he understood, campers told him, what it felt like to have cancer in his body; he was one of them.  

Founded in 2000 by pro kayaker Brad Ludden, then just 19, First Descents (www.firstdescents.org) uses white-water kayaking and other outdoor adventure sports to promote psychological and physical healing for young adults with cancer.

The free, nonprofit program has swelled from a single camp some 45 miles from Vail, Colo., to its current slate of nine camps per summer in Colorado, Montana, Wyoming, Idaho and California, where more than 150 cancer patients and survivors ages 18 to 39 challenge themselves physically and emotionally during the  six-day experience. (Travel scholarships are available.) 

First Descents uses the beauty and healing properties of the outdoors to give participants their lives back and help them realize that, while cancer is a part of their life, it does not define them, says executive director Allan Goldberg.

 Goldberg, 40, should know. At 12 he was diagnosed with rhabdomyosarcoma.

Those who apply for the First Descents experience submit a medical form from their physician, but being in treatment doesn’t keep them from being accepted, Goldberg says, adding that participants represent every stage of treatment, and all camps have medical personnel onsite.

Indeed, this summer’s campers include an 18-year-old who has Ewing’s sarcoma and a 37-year-old who is two years out from breast cancer treatment. 

Campers kayak, hike, climb and take part in “spirit” (chat) sessions, Goldberg says, adding that all levels of athletic ability are welcome. 

Royer says when campers get to “graduation day,” the rush of the water in their ears has drowned out much of “the stuff” that has been with them — concerns about family or a growing tumor. Royer, who has undergone three surgeries, says it’s hard to focus on those issues when facing class 2 or 3 rapids.

In the annals of cancer survivorship, the emerging field of adventure healing, or adventure therapy, has begun to take hold. According to the Lance Armstrong Foundation, of the 10.5 million cancer survivors in the U.S. today, more than 500,000 are ages 15 to 40, the prime target for adventure therapy and a  long-underserved population when it comes to needs related to their cancers. 

Today,  numerous national oncology retreats and camps court hundreds of cancer survivors each year, many of whom are seeking new, and increasingly challenging, post-treatment adventures. 

Payoff for the campers, while difficult to document, includes new confidence and friendships that last for years, as well as concrete healing strategies for beleaguered souls or fractured body images.

According to Marc Slatkoff, MD, medical director of First Descents, as campers surmount obstacles at retreats — whether fear of climbing a vertical wall or piloting a single-person boat through the rapids, “they learn they are capable of overcoming these obstacles. Just as they’ve had to do in life. You come out the other end more ‘whole.’ ”

In a study published in the Journal of Experiential Education in 2005, Deborah Sugerman, PhD, found that adventure programs brought survivors renewed self-worth, feelings of support and a sense of control. But to the alumni of these retreats, the nomenclature matters far less than the shared experiences, Goldberg says.

A key goal, he says, is to help survivors regain trust in their bodies — after feeling that these same bodies have let them down. In addition, when someone is 

newly diagnosed, he or she may feel weak or damaged, says Goldberg, and conquering a class 3 rapid “gives them that ‘a-ha’ moment.”

Growing along with the adventure therapy camps are other nature retreats that also take advantage of gathering in a beautiful locale to talk, bond and, in some way, be physical.

“It’s such a healing area; so powerful,” says Judi Janowski, 59, a breast cancer survivor, former camper and now retreat director of Infinite Boundaries (www.bcrf.org/infiniteboundaries/) retreats for women with breast cancer, a program that celebrates its 10th anniversary this summer. 

Janowski took part in the Wisconsin-based retreat on Madeline Island in Lake Superior at age 50, soon after her treatment for her stage 2 disease.

“The reality of breast cancer is that there is no real cure,” offers Janowski. “You can be N.E.D. [no evidence of disease] for years and still develop a recurrence.”

Janowski says all she could think about were her two sons, ages 10 and 12 at the time of her diagnosis.  “I consider myself an upbeat individual — energetic and pretty proactive,” Janowski adds, “but before I got to Madeline Island, I was out of control and hitting a brick wall.” 

Janowski says what she learned during the retreat was that a person can be healed and not be cured. She recalls that multiple aspects of the trip were vital to her healing process, from taking the ferry alone without friends or family to Madeline Island, to mingling with other middle-aged survivors and trying such activities as still-water kayaking, a ropes course and island hikes that “leave the mainland behind.”

Janowski says she had a breakthrough on Madeline Island. 

“It was the first place and the first time I could talk about my fear of dying.”

She says her husband couldn’t handle the worst-case scenario discussion, and neither could her friends. “There’s a big risk involved, emotionally,” she says. “And I really needed to talk about my fear of dying.”

Janowski says she can remember the tears and the feeling of liberation that came from being able to address the issue in a safe space.

In 2008 Infinite Boundaries retreats are being held through the end of October at centers in Wisconsin and Minnesota, where women will take part in discussion groups, creative arts and low-impact outdoor activities. Women ages 24 to 74 have attended the retreats, which cost $300 (but no woman is turned away due to lack of funds, says Janowski). 

Infinite Boundaries also has created retreats specifically for young survivors and for those going through cancer alone.

As a 20-year survivor of Hodgkin’s lymphoma, Brad Zebrack, PhD, an assistant professor at the University of Southern California School of Social Work, understands the initial isolation and lingering effects that so many survivors experience — even when the “worst” is supposed to be over.

While studying cancer’s impact on survivors and their families, Zebrack says, he has been surprised time and again by the intensity of some of his subjects’ isolation — and by the potential healing effects of survivor-oriented retreats. Zebrack serves as an adviser to Camp Mak-a-Dream in Missoula, Mont., a medically supervised, free camp for children, teens and young adults with cancer and their siblings (www.campdream.org). 

“The most valuable aspect of these camps, I think, is that many of these kids arrive feeling alone. They come after a stretch in life where they couldn’t go out on a Friday night, or it’s, ‘Friends don’t call me anymore.’ ” 

The camp experience diminishes this sense of isolation, Zebrack says, adding that it can also leave campers feeling better about their bodies. “They learn, in short, to cope with serious psychological issues through teamwork, trust and shared challenges,” he says. 

During their stay at Camp Mak-a-Dream, which has had 43,000 patients and family members visit since it opened on 87 sprawling acres in 1991, children and young adult campers ride horses, hike, swim and test their mettle on a ropes course strung nearly 40 feet above the ground. The campers attend small-group chat sessions and cancer-focused seminars in afternoons and evenings. 

For many young adults, dealing with cancer in their 20s or 30s — in large part alone &mdash; can have lifelong debilitating effects. 

“It’s a time in your life when you’re trying to establish your identity,” Zebrack says, “who you are, and who you want to be. So if cancer isolates you for an extended period of time, you’re not out there in the world, not engaging.” 

 Zebrack says he will talk about these camps with other professionals and get back comments such as, “Oh, it’s really nice.”

“I put it back out there: ‘It’s more than nice. It’s really critical to have these opportunities for survivors to interact socially during their teen and adult years.’ ”

[Young adulthood] is a time in your life when you're trying to establish your identity, who you are, and who you want to be. So if cancer isolates you for an extended period of time, you're not out there in the world, not engaging.

Today, numerous national oncology retreats and camps court hundreds of survivors each year, many of whom are seeking new, and increasingly challenging, post-treatment adventures.

The physical & personal challenges of adventure healing can help patients & survivors regain a sense of 'self.'

Rough and Tumble Recovery

For better or for worse, Anna Cluxton, then 32, and her husband, Brian, then 27, discovered a change in a breast lump in early 2001, barely a week into their marriage. In fact it seemed absurd: A healthy, young Midwestern couple forced to deal with a seeming annoyance that Anna thought was “probably nothing.” 

Only it wasn’t. The “nothing” they’d believed was a cyst instead was stage 2 breast cancer. And as Anna recalls, she hadn’t even written her wedding gift thank you cards yet. She also remembers thinking, almost immediately: What if her new young husband couldn’t handle it all—including a mastectomy?

 he ever thought about leaving me,” she says. “I told Brian, ‘This isn’t what you signed up for’ ”—a sentiment he immediately quashed. Today, nearly seven years later, they are doubly N.E.D.: no evidence of disease; no evidence of divorce. 

The numbers are imposing. If up to 50 percent of all marriages end in divorce for a myriad of non-cancer-related reasons, it’s easy to acknowledge the extra stress cancer imposes upon even the strongest couples: loss of routine, loss of dignity, loss (or erosion) of job security, insurance, and savings. Plus a loss of romance and intimacy, amid all the pain and uncertainty. Having some key tools or talking points with which to cope can make a huge difference in both quality of life and quality of relationship.

Terrence Real, LCSW, a Boston-area couples therapist               and author of 

 urges couples in various crises to air their darkest of feelings early on. “It’s OK that she feels he may leave her,” he says. “And it’s OK for him to say, ‘I’m not going to.’ ”

In fact, most couples, for lack of such expert guidance, choose a “safer” course of action. “One of the things I tell people over and over is, feelings don’t hurt you, but running from feelings can kill you,” says Real. “In our culture, we don’t seem to understand the difference between feeling something and behaving on it. We think we have to deny the feelings—even those as dark as [thinking about] divorce&mdash;or we fear we might go there.” But it turns out confronting those fears helps couples to avoid realizing them, he says. 

Support groups for both patients and couples are now routinely offered at cancer centers and hospitals nationwide. For those who prefer anonymity, online therapy-oriented resources for couples are offered by the American Association for Marriage and Family Therapy (

), which offers audio and video “talk shows” on its Cancer Survivors Network (

) of couples reconnecting             and survivors who’ve divorced.

For Kristi Ferguson, 42, of Columbus, Ohio, a stage 3 breast cancer diagnosis in 2000—for all its debilitating treatment and after-effects&mdash;helped her sharpen focus about her marriage. After couples therapy, which perhaps delayed but didn’t prevent her recent divorce, Ferguson realized, “We didn’t have good communication before my diagnosis. Or during or after, either. All of a sudden you’re fighting for your life, day-to-day.”

Ferguson joined a support group that met a few nights each month. “That’s where I let my guard down and talked about those fears, including [fears about] the relationship. It was something we never really did as a couple.”

Even after acknowledging the great comfort cancer support groups can provide, some therapy experts point out one limitation survivors and their partners should note: Cancer patients often become untouchable icons, of sorts, in a relationship instead of a partner in whom their spouse can confide. What happens in support groups often needs to be shared at home but isn’t.

To this day, long after my own diagnosis and treatment of stage 3 colorectal cancer during 2001, I recall attending a hospital-based support group and thinking (but not saying to my wife of seven years): “This is not only hurting my career, but I may be trashing yours.” Was I afraid she would falsely reassure me? Or was I afraid she would agree? Either way, I opted for the uncomfortable uncertainty of keeping silent, just what therapists warn others not to do. 

That’s where I let my guard down and talked about those fears, including [fears about] the relationship. It was something we never really did as a couple.

Cancer patients and partners typically don’t have higher-than-average divorce rates, suggests Diane Blum, MSW, executive director of Cancer

a national nonprofit group that helps patients with counseling and other key needs. In a related study, published             in 

 Manitoba, Canada, found “no data to confirm the lay belief model … that women with breast cancer are abandoned by their partners.” In fact, their review of studies seemed to indicate, as Blum says, that “the majority of marital relationships remain stable” after breast cancer. “I think you tend to see divorce among couples where the relationship was vulnerable before,” says Blum.

By contrast, therapists believe certain diagnoses, including brain cancer, can cause such major shifts in daily lifestyle and care roles that it’s impossible to predict whether a previously sound marriage will survive intact. In a study that included more than 200 married brain tumor patients, Michael Glantz, MD, a neuro-oncologist who currently practices at the Huntsman Cancer Institute in Utah, found that female brain tumor patients are eight times more likely to have a separation or divorce following diagnosis than are similarly diagnosed men. “Women seem to be more willing or more adept at nurturing their husbands through an illness, while men are not as skilled at doing the same for their wives,” wrote Dr. Glantz.

But Blum notes that countless survivors gain perspective post-cancer. A health crisis can force them to “appreciate each day more; or really get serious with what they are going to accomplish with their lives.”

For Anna and Brian Cluxton, having faced Anna’s cancer in place of planned newlywed bliss added layers to their young marriage in a hurry. “When you’re young and something huge like this happens,” Anna says, “you just don’t have those little life skills yet, the ones that you pick up over time.”

But Anna says she’s thankful for the skills they learned because it added dramatically to the depth of their marriage. “We do actually joke about it,” she says. Instead of buying frivolous or cartoon-laced birthday or anniversary cards for friends and relatives, “we gravitate toward the cards that talk about climbing mountains together. We feel we have lived years and years of marriage in a very short time.”

Curtis Pesmen

The Ins and Outs of Ports

A Skin Cancer Conundrum: Are AKs Overtreated?

Rough and Tumble Recovery

Marriage and Cancer?

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