Beverly A. Caley

When Jon Spelman, 73, was diagnosed with prostate cancer six years ago, he didn’t have any trouble deciding on a course of treatment. “I was not going to live with cancer in my body,” says Spelman. “I opted for surgery, the sooner the better.”

Spelman’s cancer was confined to the prostate gland, and according to the American Cancer Society, nearly half the men who receive that diagnosis choose surgery.

During the procedure, called a radical prostatectomy (RP), the surgeon removes the entire prostate and some surrounding tissue, including the seminal vesicles and nearby lymph nodes if warranted. Although RP carries the risk of incontinence and impotence, it is nonetheless a common treatment for prostate cancer. Newer surgical techniques and technologies, however, are providing men with additional options, and they come with the possibility of fewer damaging side effects.

The traditional approach to RP is open surgery, which requires surgeons to make a large incision (4 to 10 inches) to access the prostate, either retropubically (through the lower abdomen) or, less commonly, perineally (through the skin between the anus and the scrotum). These approaches can mean that the patient risks blood loss, the possibility of developing blood clots and a recovery time of six weeks or so. Although open RP has come to be accepted as the gold standard, this procedure is giving way to newer surgical methods.

At the beginning of the 21st century, the medical community started making the shift toward laparoscopic surgery, a less invasive technique. The surgeon makes a small incision near the belly button and then inserts a laparoscope, a thin, tube-like instrument with a light and a lens for viewing the prostate. Then more incisions are usually made in the same area to expedite removal of the prostate.

For cancer confined to his prostate gland, Jon Spelman chose laparoscopic prostatectomy, and has no regrets. [Photo courtesy of Jon Spelman]

Laparoscopic surgery has many advantages. It is a minimally invasive method, so there is less bleeding and pain, and hospital stays can be shortened. However, learning the techniques of pure laparoscopic surgery can be challenging for many clinicians.

Spelman’s procedure was done laparoscopically. Although he has experienced the common side effects of incontinence and erectile dysfunction, he has no regrets. A recent suburethral sling procedure has helped alleviate many of his incontinence issues, providing welcome relief.

The next development in prostate surgery in the U.S. was the use of advanced robotic systems equipped with laparoscopic tools, according to Mitchell Humphreys of the Mayo Clinic in Phoenix. When performed by an experienced surgeon, robot-assisted surgery can result in lower rates of blood loss and complications, less pain and quicker recovery times. Research is ongoing to determine the advantages and disadvantages of the different techniques.

With the availability of these new techniques, open surgery might not be widely available in the future. Furthermore, according to Wesley White, an assistant professor in the Division of Urology at the University of Tennessee Graduate School of Medicine in Knoxville, Tenn., surgeons familiar with that approach will be retiring, and younger surgeons are selecting robotics.

Although surgeons may be moving toward robotics, the research is by no means clear that it is a big improvement over other methods. Like open prostatectomy, laparoscopic and robotic prostatectomies can be performed with the goal of sparing some or all of the nerves that control erections in eligible patients; nerve-sparing surgery was introduced by urologist Patrick Walsh in 1982, before the advent of robotic surgery. But a review of the literature published in 2010 in 

 showed that, to date, neither laparoscopic nor robot-assisted surgery is better than open surgery at preventing the common side effects of incontinence and erectile dysfunction. The research does, however, show a trend toward improved outcomes in both areas when robot-assisted surgery is used, compared with the laparoscopic approach. For this reason, both Humphreys and White agree that, in the long run, robot-assisted techniques will result in better outcomes.

“The clarity with which you can see the anatomy is so much better,” White says. “Instead of standing at the operating room table staring down at someone’s pelvis and reaching behind the pelvic bone, sort of fishing around for things, you are actually looking at it on a huge screen that enhances your vision.” White and other experts also note that the robot allows surgeons to make smaller, more precise incisions.

One way to improve care for patients with prostate cancer would be to achieve the benefits of removing the prostate gland without damaging surrounding structures. Even with the currently used laparoscopic and robot-assisted techniques, those structures are affected.

Natural orifice transluminal endoscopic surgery (NOTES) and laparoendoscopic single-site (LESS) surgery are two new techniques that have the potential to make prostate cancer surgery even less traumatic. They are both under investigation.

With the NOTES technique, surgeons can remove the prostate without making an incision by using the urethra as the entry point, Humphreys explains.

“There are some limitations right now on the technique and the technology, but where it is today is not where it is going to be two years from now,” he adds. His hope is that companies that produce instruments for NOTES will see the potential benefits for patients with prostate cancer, and “true innovation can take over.” One barrier, though, is that the medical device companies already have a large share of the urology market, so they have little financial incentive to improve urology applications. Their focus now is on equipping robots for other types of surgery.

“After my diagnosis, my first reactions were ‘How soon am I going to die and what am I going to do about it?’ With the love and support of my family, and the opportunity to talk with other men who had similar experiences, I got through it.” — Jon Spelman [Photo courtesy of Jon Spelman]

Humphreys explains that, in the future, it might be possible to use NOTES for focal removal, which means locating and removing the cancer from the prostate instead of removing the entire gland. “Focal removal now is limited by the ability of imaging to discern disease from normal prostate tissue. At this point, what is working best is treatment with ablative technology, often with a laser.”

Although small clinical trials have shown that this procedure is effective, some researchers question its safety and efficacy. The reason is that prostate cancer is often a multifocal disease, and there is concern that some cancerous cells will be left behind.

LESS, an alternative form of laparoscopy, has shown promise as a surgical technique. It uses the belly button as a single entry point, as well as specially designed flexible instruments. In 2007, surgeons from the Cleveland Clinic used this approach on four patients. All the patients had early-stage prostate cancer and came through the surgery successfully. Between 2010 and 2011, surgeons in China performed prostatectomies on six patients with the LESS technique. According to the surgeons, their work points to the feasibility of this approach in selected cases.

Prostate surgery using the LESS approach has also been done with a robotic system, but the currently available robot is not ideal for this type of surgery. This issue is one of many yet to be resolved, largely because the technology has not caught up with the concept.

“Someday they may build a robot that allows us to do everything we want to do, that allows us to do an entire procedure inside the space of a pencil eraser, but we’re not there yet,” White says.

In the meantime, many men are satisfied with surgery using the tried-and-true methods. That has been the case for Spelman, a writer and performer, who has developed a theatrical production based on his experience with prostate cancer. Called “Facing the Bull,” the show has had runs in Washington, D.C., New York, Seattle and Indianapolis. In each venue, the performance has helped educate men and their families about prostate cancer, as well as pointing to the ways that humor can help men cope with their diagnosis and treatment.

“After my diagnosis, my first reactions were ‘How soon am I going to die and what am I going to do about it?’” recalls Spelman. “With the love and support of my family, and the opportunity to talk with other men who had similar experiences, I got through it.”

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Innovative approaches offer more surgical options with potentially fewer side effects.

Delicate Difference: More Surgical Options for Prostate Cancer

After an often contentious political fight, the Affordable Care Act (ACA), often referred to as Obamacare, was signed into law on March 23, 2010. Regardless of how Americans in general may feel about healthcare reform, parts of the ACA are good news for people with cancer, according to Heidi Albright of the MD Anderson Cancer Center in Houston. “I think some people fundamentally don’t understand some of the hidden gems that are in the bill,” she says. Here’s a look at what it means for people with cancer.

Before the ACA, many private insurance policies set a lifetime limit (typically $1 million or $2 million) on how much health care a person or family could receive. The lifetime costs of cancer care could quickly hit such limits, but they are now history. Similarly, annual dollar limits on essential benefits, such as hospital stays, are now banned in all group plans and in new individual plans. The enormous cost of drugs is just one component of the total costs faced for cancer treatment. Eleven of 12 cancer drugs approved in 2012 cost more than $100,000 per year. In addition, the costs of drugs already on the market continue to skyrocket. For example, Gleevec (imatinib), a targeted therapy used to treat a variety of cancer types, was priced at about $30,000 a year when it was introduced in 2001. By 2012, its cost had more than tripled, to about $92,000 per year. With prices like these, lifetime limits have often been surpassed.

The ACA also addresses the Medicare prescription drug “doughnut hole,” the gap between the amount of prescription drug coverage initially provided and the amount at which catastrophic coverage begins. Before healthcare reform, older adults with Part D drug coverage who reached the doughnut hole had to pay 100 percent of prescription drug costs until they reached a certain out-of-pocket cost threshold. Under the ACA, once beneficiaries reach the doughnut hole, they automatically receive a 50 percent discount on covered brand name drugs and a 14 percent discount on covered generic drugs. The ACA calls for the doughnut hole to become progressively smaller every year until it is eliminated in 2020.

“We have heard from numerous people who have been denied coverage or been quoted outrageous rates because they have a history of cancer, and now those folks will be able to get coverage,” says Erin Reidy, a public policy expert who previously served as an associate director of the American Cancer Society Cancer Action Network. As of 2010, the ACA prohibits insurance companies from denying coverage to children under age 19 due to a pre-existing condition. This protection will be extended to everyone beginning in 2014. In addition, insurance companies will not be allowed to cancel insurance coverage because someone receives a cancer diagnosis.

Before the ACA, lack of access to care could prevent people with cancer from receiving a diagnosis in a timely manner, as well as the treatment they needed to produce the optimal outcome, Reidy explains. In addition, some insurance companies tried to identify technical errors on applications specifically to deny payment for services when patients got sick. The ACA law makes that illegal.

Because of the ACA, many young adults who previously did not have access to health insurance are now eligible to remain covered under their parents’ plans until age 26. Cancer death rates are increasing in young adults, according to Electra Paskett, of The Ohio State University Comprehensive Cancer Center in Columbus, Ohio. Scientists believe this increase may be due, in part, to delays in diagnosis and treatment because of a lack of insurance. Paskett is hopeful that better coverage for young adults will lower the cancer death rates in this age group.

We have heard from numerous people who have been denied coverage or been quoted outrageous rates because they have a history of cancer, and now those folks will be able to get coverage.

Albright says the future of cancer care is about preventing cancer and recurrence. “Our focus needs to be on our younger population, so that they don’t develop the disease in the first place,” she adds. In 2010, all new insurance plans were required to cover certain preventive and screening services, such as mammograms and colonoscopies, without charging a deductible, co-payment or co-insurance. One patient who benefits from that provision is Janell Richison, whose diagnosis of stage 1 colon cancer in 2011 meant the Newark, N.J., resident would have to undergo annual surveillance colonoscopies—procedures that her insurance now covers.

Beginning in 2014, there will be a minimum standard of care through a provision of the ACA called the essential health benefits. This is good for cancer patients, because, as Reidy explains, “We would see people who had health insurance coverage that would, for example, be denied coverage for chemotherapy, which is clearly far from adequate.”

The ACA includes many provisions to make insurance affordable. One big change is the creation of a Health Insurance Marketplace in each state, which offers a choice of health plans to people who are not insured through an employer. Enrollment began in October. (Visit 

 for details.) Some people will qualify for a free or low-cost plan, or for a new type of income tax credit that can be applied immediately (rather than waiting for tax time). The tax credit, in an amount based on family size and expected income, will be sent directly to the insurance company and applied to the monthly premium.

The ACA contains another provision that will directly impact people with cancer: Insurance companies must cover routine costs associated with approved clinical trials. The requirement does not apply, however, to “grandfathered” health plans, that is, insurance coverage for individuals enrolled prior to the ACA’s enactment.

Although several aspects of the ACA may affect the cost of cancer care in the long run, some experts think the law did not go far enough in this regard. Albright notes that the ACA was intended to “bend the cost curve,” so she considers it unfortunate that the true costs of actual care delivery are never specifically addressed.

Hospital charges can quickly mount and vary wildly between hospitals—even within the same city. The Centers for Medicare & Medicaid Services recently released data on what different hospitals charge for many common services. Cancer center data were not included, so it’s difficult to compare costs. What hospitals charge uninsured patients, insurance companies and Medicare also varies widely, adding more difficulties for patients trying to conduct a cost analysis in preparation for treatment.

Moreover, the cost structure is complex, making it nearly impossible for patients to assess their liability for care costs in advance and forcing them to bear the brunt of insurance denials for services ordered by their doctors.

In an attempt to address healthcare costs, the ACA established a national pilot program of payment “bundling.” That means that hospitals, doctors and providers are paid a flat rate for an episode of care rather than according to the current system in which each service or test is billed separately. Another part of the ACA will tie physician payments to the quality of care they provide, starting in 2015. Physicians will see their payments modified so that those who provide higher-quality care will receive higher payments than those who provide lower-quality care.

While Richison has benefited from certain reforms in the ACA, she says more needs to be done in requiring insurance companies to provide coverage for cancer surveillance. In order to determine whether her cancer has returned, for example, she needs several regular tests in addition to annual colonoscopies.

“Last year, I had to pay close to $400 out-of-pocket for a CT scan,” she says. And, every six months, she pays about $45 for two blood tests. She thinks these additional tests should be classified in a way that ensures 100 percent insurance coverage. “The colonoscopy is only one factor in the surveillance of colon cancer,” she says. “It is the CT scan that will detect whether cancer cells lurking in one’s system have moved to other organs. The colonoscopy alone cannot detect this.”

What healthcare reform means for people with cancer.

Added Benefits: Health Care Reform

Part of the fight against cancer is finding a way to cover the enormous cost of treatment. Many people immediately  think of  direct costs, such as insurance deductibles and medications. However, indirect costs, such as those for travel and lodging, additional child care, modifications to the home or workplace, and other daily living expenses, are often substantial—and may present challenges for patients and families who are already under tremendous financial pressure.

Unfortunately, these expenses often pile up over an extended period of time due to the long-term nature of most cancer treatment, and they usually doesn’t subside once treatment is over. There are alternative ways to access established avenues of financial support, as well as fresh funding strategies made possible by social media and innovative fundraising websites.

“I think one of the most important things is, don’t ignore the bills that are coming in. Be proactive and reach out, you may be surprised at what might be offered to you,” says Erin Moaratty, chief of mission delivery at the Patient Advocate Foundation (PAF), a nonprofit that helps patients navigate the paths to financial assistance.

[Wondering if you should apply for disability?]

Institutional, government and nonprofit organizations provide help and financial assistance to patients in need, but it does take some legwork to find and apply for these resources. However, help is available to assist patients in making the connection.

[Find resources to ease financial burden of cancer]

About 21 years ago, Charlene Wilverding was diagnosed with oligodendroglioma, a type of brain tumor. Initially treated with radiation, the cancer went into remission. Fifteen years later, the tumor grew back. At that time, she had chemotherapy—paid for by her husband’s insurance&mdash;that resulted in a six-year remission.

When the tumor recurred a second time, her circumstances were different. Her husband had lost his job and they were struggling financially. Now on Medicare, Wilverding was told each treatment  would cost $453 out of pocket for her co-payment, and she would need numerous treatments.

“We just didn’t have the money. We were already preparing to declare bankruptcy, and the bank had already foreclosed on our house,” she says.

When Wilverding contacted PAF, her case manager researched co-payment assistance programs and located two national programs that could help her. Ultimately, Wilverding was approved for assistance through the drug’s manufacturer, which saves her $5,436 a year. “I’m glad there are people who care enough to help, otherwise I would be dead, I guess.”

Another source of assistance is a patient’s healthcare provider, who should be able to provide information on local organizations. In addition, most hospitals have a social work, home care or discharge planning department. Patients should ask about programs that provide transportation and other practical assistance. Public libraries and  patient libraries at many cancer centers also are  sources of information about local programs. Another source of information can be patients and caregivers at support groups who can  offer referrals.

The Cancer Financial Assistance Coalition (

) is an association of many related organizations that help patients cope with the costs of cancer. Its website has links to 14 different organizations that provide financial assistance or information.

PAF has a Financial Aid Fund Division that provides small grants to patients who meet financial and medical criteria. PAF can also provide help with pharmaceutical co-payments in some cases through its 

 division. Another popular service is the American Cancer Society’s 

, which utilizes volunteers to provide free transportation for patients to and from treatment.

Some people have used a community fundraiser, such as a spaghetti dinner or a fun run, as a way to raise money for individual patients. Organizations such as PAF offer helpful guidelines on putting together an effective fundraiser (

Patients who belong to a church, synagogue or other religious organization should let their faith community know their situation and ask if they have resources that can help. Sometimes, in addition to providing financial support, community and faith-based organizations provide volunteer services that patients would otherwise need to pay for, such as transportation, lodging, child care, home care and food.

Other patients have benefited from group efforts by rallied coworkers, neighbors and even acquaintances who share a similar hobby or profession.

When Buddy Church, a musician in Memphis, Tenn., received the diagnosis that his prostate cancer had returned, his friends and coworkers at Guitar Center were quick to organize a benefit concert to help with medical costs. Friends invited several local bands to perform at a venue where Church plays regularly, dubbing it "Buddyfest." In addition to asking for a donation to attend the concert, friends also organized a silent auction and a raffle.

Crowd-sourcing websites let patients tell their stories to a wider audience and collect donations, for a fee. Most of these sites charge a similar amount: a deduction of about 8 percent from each donation, which includes credit card fees and operating costs. Donors are recognized on the website and individuals can view fundraising progress. If patients decide to go that route, they need to be sure they understand the terms and fees associated with the site. Patients should know if there are set-up costs, processing fees or a monthly charge associated with the site.

According to Moaratty, it is important to carefully evaluate the pros and cons of using a fundraising site. She notes that, on the plus side, many sites allow patients to use the money raised in any way they like within their “medical needs,” such as medications, transportation or even insurance premiums. Another plus of using a crowd-sourcing site is that friends and family can use a credit card to give money instantly and securely.

On the downside, Moaratty says to be successful it is necessary to keep the page up to date and to send out thank you messages to donors. “For some patients, this may mean that a caregiver or family member may need to be the primary contact for the page in order to support the activity,” Moaratty says.

When soliciting donations, patients may want to offer donors updates on their treatment progress. Requesting a $100 donation for a radiation visit co-pay or $50 for transportation to therapy may help donors understand the financial obligations and be more willing to help.

Patients will need to decide if they want to keep their fundraising private or ask friends and family to share it. Moaratty notes that some people may be uncomfortable putting their personal details out in such a public way.

Eddie Franklin, a friend of Church’s who organized a GoFundMe page to help with medical costs, says it was tough to put it out there that Buddy had cancer again and needed help. “But we chose to use this as a way to honor him and show him how much we love him.”

Franklin admits that there are pros and cons to crowd-sourcing websites, but overall, he believes it’s been a huge help. The webpage has been able to raise money from Church’s friends all over the country, and at the same time, promote the community fundraiser held in his honor.

Another route is adding a donation link to a blog, Facebook page or other personal web page. Using a payment service, such as PayPal, provides a way to collect donations with no setup costs or monthly fees. For PayPal, the fee for each donation made with a debit or credit card is 2.9 percent plus $0.30 per transaction.

Some may find it worth the time to research and then choose the best option, whether it is the easiest or the most cost-efficient for their situation.

Sometimes the hardest part about getting financial help is asking for it. Patients should not be ashamed to ask for help closer to home, including community-based and charitable organizations, faith communities, friends and extended family. Remember, a patient will hardly ever get help if they don’t request it.

Elizabeth Whittington contributed to this article.

Institutional, government and nonprofit organizations provide help and financial assistance to patients in need, but it does take some legwork to find and apply for these resources.

"...we chose to use this as a way to honor him and show him how much we love him.”

Patients battling cancer get financial assistance from friends, family, social media and non-profit organizations.

Non-Traditional Methods to Pay for Cancer Care Pays Off

The human body  sometimes produces its own immune response to renal cell carcinoma that results  in spontaneous disease remission. (Estimates of the frequency of spontaneous  remission vary, but it may occur in as few as 0.08 percent of cases to as many  as 7 percent of cases.) Cytokines are proteins produced by the immune system  that allow immune system cells to communicate with each other. Researchers are  studying numerous cytokines to try to reproduce or enhance this natural  response.

For example, in  studies in the laboratory and in animals, interleukin-18 (IL-18) showed  anti-tumor activity, both as a single agent and in combination with other  biologic or chemotherapy agents. A recent phase I study indicates that IL-18 is  safe to use in people. The side effects include fevers and chills, which were  easily managed and decreased in severity over time, and treatable blood problems  and chemical imbalances. Laboratory tests on these patients led researchers to  recommend additional studies.

IL-12 is another cytokine that has shown promise in some early human studies, but the response rate in humans has been considerably lower than the rate that was expected, based on the activity of IL-12 in mice and in human cancer cells studied in the laboratory. James Yang, MD, points out that these cytokines are normally part of a complex, multi-component immune network and must function in cooperation with other cytokines and immune cells. A recent phase I study combined IL-12 with low-dose IL-2, and another study combined IL-12 with interferon. Both studies found evidence that IL-12 works better in combination with other cytokines. Yang explains, “We need to explore such strategies to realize their full therapeutic potential. Yet those efforts are severely handicapped by availability, cooperation between companies, and the lack of appropriate flexible oversight regulations."

The human body sometimes  produces its own immune response to renal cell carcinoma that results in  spontaneous disease remission. 

Beverly A. Caley

Delicate Difference: More Surgical Options for Prostate Cancer

Added Benefits: Health Care Reform

Non-Traditional Methods to Pay for Cancer Care Pays Off

Novel Cytokines for RCC

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