You Need a Second Opinion!

Who does? Anyone being treated for cancer needs to periodically obtain a second opinion from a highly respected oncologist in the field of your cancer. “But, I have the greatest medical oncologist in the world…I don’t want him/her to think I don’t trust him.” Nonsense! It is not a matter of trust, and your oncologist—assuming he is being above board with you—will understand your position completely.

Obtaining a second opinion is your right, something you owe to yourself, and is very accepted, especially where treatment for a life-threatening disease is concerned, especially in this era of HMOs and other managed care plans. Even though you have the highest regard for your doctor, obtaining a second opinion is simply a matter of "trust, but verify."

What can I learn from a second opinion?...Plenty! In the following I summarize the results of just one second opinion I have obtained over the course of treatments. This was in response to my first medical oncologist (MO) saying “No” to every intervention or surgical treatment we asked about for my liver metastasized colon cancer. My wife and I had done plenty of research on the matter and felt I was a candidate for a number of treatments other than systemic chemotherapy (SC). At that point, I also had not obtained a PET scan in four months of treatment to determine the activity of my tumors!

It was obvious my MO was only interested in keeping me on SC. Why? I can only speculate about their motives, but remember the quote of Drs. Theodosakis and Feinberg from my June 30, 2008, blog: When it comes to the HMO business—and it is a business—“it’s all about money” (Don’t Let Your HMO Kill You—How to Wake Up Your Doctor, Take Control of Your Health, and Make Managed Care Work for You, by Jason Theodosakis, MD, and David T. Feinberg, MD). Thus, by not doing anything for me other than providing the absolute minimal standard of care, the MO minimized the amount of money he was accountable for the HMO having to spend.

A second opinion was clearly called for.

My wife and I put in a call to John Hopkins to obtain the name of a highly reputable oncologist in Southern California, and we were referred to Dr. Leland Foshag, oncologist surgeon, UCLA. In summary, Dr. Foshag confirmed that I was indeed a candidate for a number of intervention treatments, and recommended I stop my current questionable SC and get to a comprehensive cancer treatment center. He also warned us that we would have to fight every way possible to obtain these treatments from the HMO. He was right.

The first thing that happened was my primary care physician (PCP) ignored my second opinion report and refused to give me a referral to see the appropriate intervention oncology group to determine if I was a candidate for treatment other than SC or not! Why?...It’s all about money. After weeks of wrangling with the insurance company and PCP over the fact that obtaining intervention treatment was medically necessary, I finally obtained approval to obtain consultation from La Jolla Radiology/Scripps Hospital, which led to me obtaining Selective Internal Radiation Therapy (SIRT) treatment by an extremely knowledgeable and progressive intervention oncologist, Dr. Zachary Rattner.

Although this did not happen without a fight, it would never have happened without a second opinion from a highly recognized and respected outside oncologist.

You Only Flyfish for Trout...Right?

Not anymore. Today, anglers are using flyfishing equipment for virtually every species the conventional tackle fishermen go after. The practical size limit to target with a fly rod is about 100 pounds; however, much larger fish—particularly tarpon—have been caught on flyfishing equipment. The problem is that even the heaviest flyfishing tackle is still considered “light tackle,” and you may end up fighting a very large fish for well over an hour on a fly rod—few anglers really find this fun. I once had a sailfish guide tell me he loved it when his clients hooked up on a large fish because he knew he wouldn’t have to do anything for the next hour and a half or so.

Living in San Diego, one of my favorite fisheries is San Diego Bay. Other fisheries in the San Diego region include Mission Bay, miles of surf, the kelp beds just beyond the breakers, off-shore (including day and overnight trips several miles out), and numerous lakes that periodically give up record large mouth bass.

San Diego Bay is a favorite of mine because I can be on the water within 30 minutes, it is a prolific fishery, and the fishing it is not strenuous. This makes fishing from a boat perfect for those who may be dealing with less-than sure footedness as the result of neuropathy and other side-effects of chemo. On the other end of the spectrum is surf fishing, which requires being nibble on your feet and withstanding the forces of the waves, all while casting and keeping your line sorted out.

My friend Bob recently invited me to join him on his 17 foot boat on the Bay for a morning of fishing. We met at the Coronado Island boat launch about 5:30 AM, and shoved off a few minutes later by the first light of dawn. We were greeted by perfect weather, no wind, and glassy water; and decided to concentrate on the north end of the bay, an area that I had not fished in a long time. As the result of trying a number of different weighted flies—mostly variations of Clouser Minnows—we were rewarded with numerous spotted bay bass, calico bass, a couple of small halibut, one barracuda, and one species neither of us could identify.

We used 6 wt. rods—which, by the way, is also a size rod commonly used for trout fishing—and shooting head lines, a fly line with the last 20 to 30 feet weighted so it will sink. Shooting head lines take a bit more effort to cast than floating lines, but, as you see, bay fishing for saltwater species can readily be done with what is basically trout fishing equipment and relatively small flies.

While I admit to being a bit pooped by the time we got back to the boat launch about noon—partly as a result of getting up at 4:30 AM and partly as the result of non-stop casting for about five hours, being out on the water and forgetting the trials of tribulations of cancer treatment made it all worth while!

While most consider trout the species of choice for flyfishing, don’t limit yourself to just trout. Fish what you have in your immediate area, rather than just waiting for the opportunity to go trout fishing. Wherever you find water you will generally find fish…take advantage of the fisheries near you, and fish often! ■

How Do I Get Into Fly Fishing?

That is a commonly heard question from those contemplating trying fly fishing. There are a number of avenues one can take, including the following:

■ Attend a Reel Recovery or Casting for Recovery retreat
■ Join a fly fishing club
■ Take lessons from a local fly shop
■ Take lessons from a private fly fishing school
■ Learn from videos, books, and magazines

Each of these paths is discussed below. However, which ever route you take, keep in mind that fly fishing is a sport that, while the fundamentals are easy to pick up in a very short time, most learn and improve upon over a number of years, if not a lifetime. You are encouraged to take advantage of as many of the above resources in your area as are available.

Attend a Reel Recovery or Casting for Recovery Retreat
One of the goals of both Reel Recovery (http://www.reelrecovery.org/) and Casting for Recovery (http://www.castingforrecovery.org/) is to introduce men and women, respectively, dealing with cancer issues to fly fishing. Both organizations run excellent overall retreats, which include in-depth discussions of cancer related issues, as well as fly fishing instruction. As a result of trying to fit a lot of into a two-day retreat, a somewhat meager amount of time is devoted to teaching you how to cast a fly rod and fly fish. Also, the volunteer instructors only come together for generally a two day period, and their styles of teaching and techniques may vary considerably. Nevertheless, both retreats will introduce you to casting a fly rod and teach you some of the rudiments of fly fishing, and they are a great way to get your feet wet and share camaraderie with others also dealing with cancer...and they’re free! A significant consideration is the proximity of a retreat to your hometown, and the dates of the retreats—which may make attending one not feasible from the standpoint of timing or the cost of travel.

Join a Fly Fishing Club
There are hundreds of fly fishing clubs throughout the U.S., as well as other countries. Many are members of the Federation of Flyfishers (http://www.fedflyfishers.org/) or Trout Unlimited (http://www.tu.org/), and an excellent way to find a club in your area is to visit both of these websites. There are also clubs not associated with either organization, but all clubs typically have a website, and can be located with a Google search of the Internet. There are two clubs in the San Diego area: Golden State Flycasters (http://www.goldenstateflycasters.org/) and San Diego Fly Fishers (http://www.sandiegoflyfishers.com/).

Depending on the size and sophistication of the club, they typically offer classes and seminars on casting, fly tying, rod building, and fly fishing; monthly programs on techniques and fly fishing destinations; and club organized fly fishing trips to fisheries near and far. Again, the consistency of instruction, particularly when it comes to fly casting, can vary considerably. The primary reasons for this are that a good fly caster is not necessarily a good teacher, and people tend to be either intuitive or objective in their learning as well as teaching. For this reason, you should choose a mentor that fits your style of learning.

An exception to the above are professional instructors brought in by the club to provide a seminar on, say, fly rod casting—these instructors are used to dealing with a number of learning styles and should be able to accommodate your style. Fly casting and other seminars presented by members of the club are typically free or at a nominal charge to cover materials, whereas casting seminars presented by outside professionals typically cost on the order of $50 or more for a half day class.

Take Lessons from a Local Fly Shop
Fly shops typically offer the services of their staff for fly casting and fly tying lessons. There is generally a cost associated with these lessons, which can vary considerably. The advantages of taking lessons from a fly shop, assuming you live near one, is that the shop can pretty much accommodate your schedule (rather than waiting for a club to schedule the lessons you desire), the staff are professionals in the sport, and the shop offers the ability to try a number of rods with different actions to see what fits your style best (the subject of rod action is beyond this blog, but rods generally vary from slow to very fast, depending on the material and design of the rod). I strongly recommend you support your local fly shop and get on a first name basis with the staff, as it will become a valuable resource of information, as well as equipment and materials.

Take Lessons from a Private Fly Fishing School
There are a number of such schools spread across the country, ads for many of which can be found in the back of fly fishing magazines or Googling the Internet. One of the best of such schools is Orvis, which conducts classes in freshwater and saltwater fly fishing in a number of states. In addition, a number of fly fishing lodges, as well as colleges, offer fly fishing classes. A big advantage of these schools is that the instruction is very consistent, from the course content to the casting instruction. These courses are typically consist of three days of intensive learning, during which you learn the fundamentals of fly fishing and casting, as well as get your feet wet in a number of actual fishing scenarios.

Learn From Videos, Books, and Magazines
These sources are the least recommended resources for beginners, especially fly casting, simply because you don’t have a live person there to help correct errors in what you are doing or provide immediate answers to your questions—this applies to casting, fly tying, rod building, etc. It would be particularly difficult to learn to cast competently and efficiently on your own for the simple reason that casting a fly rod is completely different than other forms of fishing. Nevertheless, there are many excellent videos, books—more books have been written about fly fishing than any other sport—and magazines that cover every aspect of fly fishing, and they are highly recommended to supplement the resources discussed above over the long term.

Fly fishing is a multifaceted sport, and can be a bit overwhelming—don’t let it do so! You may decide to only fish freshwater fisheries, or saltwater, or both…the choice is yours. You may decide you only want to fish streams, or lakes. You may only want to fish for trout, or bass, or go after the big guys, such as sailfish, dorado, and tuna. One of the beauties of fly fishing is that it isn’t limited to only trout (which is what many associate with fly fishing), and fly fishers today target virtually every species that convention tackle fishermen and women target, except for the largest species, such as tuna weighing several hundred pounds. You may also want take up fly tying, or perhaps building rods—neither is necessary to enjoying the sport, they are just another aspect of the sport you can get involved with if you wish. The important thing is that you enjoy fly fishing to whatever level you desire—keep it simple, or become another fly fishing fanatic…the choice is yours. ■

More on Being a Pro-active Patient

In my blog of June 30, 2008, titled Don't Let Your HMO (or Doctors) Kill You, I discussed the importance of being a pro-active patient in the treatment of your cancer, which I can't emphasize enough. I have since come across an article in the June 22, 2008 issue of the San Francisco Chronicle, with the heading Medical Care's State of Denial, by staff writer Victoria Colliver.

As this matter is so important to you as a cancer survivor, and the quality of time you spend standing in a river waving a fly rod, I have presented the article in its entirely below. I have only consolidated some of the paragraphs from the newspaper format for ease of readability and to save space. The article follows:

Doctors are supposed to prescribe tests and treatments that are medically necessary for their patients. Health insurers are expected to cover that care, while keeping inappropriate expenses in check. But what happens when that process breaks down and sick patients are left to fight for medical care?

Each year, thousands of Californians find themselves at odds with their health insurers over whether they, as patients, should get the treatment their doctors prescribed. Peter Isgro of Santa Cruz is among them. His insurer, Anthem Blue Cross, stopped paying for certain chemotherapy drugs after his cancer progressed, a decision that has been upheld in two appeals. Isgro said he feels like the insurance company is second-guessing his doctor. "If your doctor wants to give you something and they can deny it, that's wrong," he said.

Anthem Blue Cross said it follows strict protocols, relying on medical evidence in determining what is necessary and appropriate to cover. "Even in a dire situation, it is ethically appropriate to withhold treatment if it's not effective," said Dr. Michael Belman, medical director of Anthem Blue Cross, who was not speaking specifically about Isgro's case. Belman said doctors do not always recommend the best treatments, and cost is never a primary consideration.

Consumer advocates, however, see the situation differently. Health insurers "are going back to the old strategies of the '90s, when they interrupted care on the front end by denying or delaying treatment offered by a doctor," said Jerry Flanagan, health advocate for Consumer Watchdog, a Santa Monica group. According to him, insurers hope patients will give up or settle for less, either way saving them money, a contention the companies dispute.

Patients now have a number of resources to turn to if they believe they received an unfair denial. Last year, the state's HMO Help Center received nearly 90,000 calls from consumers asking for help in resolving theirhealth plan woes.

About 7,000 Californians have taken advantage of third-party medical reviews since 2001, when the state Department of Managed Health Care started offering them. Last year, the department resolved 1,716 independent medical review, or IMR, cases.

The Department of Insurance, which regulates a smaller number of plans, received 35,280 complaints and resolved 262 IMRs in 2007. About 40 percent of all IMR decisions are settled in favor of the patient, according to the Department of Managed Health Care.

The majority of treatment disputes address whether the proposed therapy is"medically necessary" or if it is considered to be "experimental" or"investigational." Even treatments approved by the U.S. Food and Drug Administration can be deemed experimental if they are typically used in a different fashion or there is simply not enough evidence to support the use.

Physicians often feel caught in the middle. "Do I stop treating them while the insurer determines they have eligibility? Even if they get authorization, they say that doesn't guarantee payment," said Dr. Michael Sherman, an oncologist who has offices in Walnut Creek and San Ramon. Sherman said he is forced to provide unreimbursed treatments to patients in those situations.

Dr. Alan Sokolow, chief medical officer for Blue Shield of California, said insurers try to strike a balance. "We think that is our job - to help patients and providers apply the benefit package the patient has, the dollars they put for insurance coverage and health care, in the most appropriate and effective way," he said, adding that patients should appeal if they disagree.

When appeals don't work, patients can sue their health plan. But that can be a difficult proposition, given that it can be tough to get a lawyer totake such a case, and most plans require their members to agree to binding arbitration. In the end, patients usually want to get the treatment rather than endure a lengthy legal process.

Joanna Smith, a patient advocate who runs Healthcare Liaison Inc. in Berkeley, said persistence and doing research to back up the case give patients a better chance of success. "I always say to people appeal, appeal, appeal," she said. "And then appeal again."

Case studies: Three Northern California patients' struggles with insurance carriers.

Karen Vinci In December 2006, when Karen Vinci's bile-duct cancer recurred, she was told surgery wasn't an option because of the location of the tumor. Instead, a group of doctors at UCSF recommended what they considered the Alamo woman's only option: five weeks of external-beam radiation followed by noninvasive radiosurgery that used a robotic device called CyberKnife, which attacks the tumor with high doses of targeted radiation.

Vinci's insurer, Blue Shield, approved all the treatments she needed in preparation for the therapy, including the implantation of gold seeds in the tumor. But about two weeks into the radiation treatments in March 2007, Blue Shield reneged on the rest of the radiation as well her CyberKnife procedures. So Vinci's husband pulled out a checkbook and paid UCSF $10,000 of the $60,000 treatment to make sure his wife's care was not delayed or canceled. "I had no choice. It was either die or give them money," said Vinci, 57.

Blue Shield had labeled the treatment, which received FDA approval in 2001 for treatment of nonoperable tumors in all parts of the body,"experimental." CyberKnife's manufacturer, Accuray Inc., said the federalgovernment's Medicare program covers the treatment, which has been used on more than 40,000 patients.

Vinci, with the help of her husband and a patient advocate at UCSF, immediately filed a grievance to have a doctor within the insurance company review her case. After that was denied, Vinci went to the insurer's second-level appeal, a three-party panel, which sided with the company. When Vinci requested an expedited independent medical review of her case through the Department of Managed Health Care, she got the answer she wanted. The state's reviewers overturned Blue Shield's decision, and the hospital promptly refunded the Vincis' money.

Vinci, who is now cancer-free, still does not understand the denial, especially because the treatment was expected to give her a full recovery. "It was just devastating to know that money was an issue when it comes to your life," she said.

Richard Reynolds Richard Reynolds' health insurer, Blue Shield of California, paid for virtually everything - surgery, chemotherapy, radiation and medication -after the Berkeley man was diagnosed last year with a rare form of cancer. When his tumor failed to show on a standard CT scan, his doctors recommended a more sensitive and expensive imaging technique called a PET scan. But his medical group and insurer, having denied an earlier PET scan request, again balked, labeling the tool "experimental" or"investigational" for his diagnosis.

Reynolds managed to get the scan covered when his surgeon appealed directly to high-ranking Blue Shield executives. But a follow-up scan requested several months later was still denied. Fearing a delay in care, Reynolds shelled out $2,200 in March for the scan at a private PET imaging center. CT scans cost about half the price of PET scans.

Reynolds was mystified by Blue Shield's position. "They've paid for all kinds of specialists. They've put out hundreds and thousands of dollars. But with this one thing - the PET scan - they've drawn this bizarre line in the sand," said Reynolds, 64, communications director at Mother Jones magazine.

His doctor recently submitted a fourth request for an upcoming PET scan, which also was denied. Reynolds, whose appeals were initially denied through Blue Shield's internal grievance process, submitted a request for an independent medical review through the state Department of Managed Health Care. But when a reporter told Blue Shield officials about the issue - even without identifying the patient or his diagnosis - they tracked down Reynolds' case and resolved the problem.

Blue Shield's medical director, Dr. Alan Sokolow, said his company should have covered the test, but found itself in the difficult terrain of trying to apply standardized protocols to a rare condition. "We try very hard to be consistent and be fair and correct in our decision making. But this is why we have an appeal process," he said. "Sometimes,we don't always make the correct decision."

Peter Isgro When antiques store owner Peter Isgro was diagnosed with late-stage colon cancer, he was told he had just months to live. That was more than two years ago. For those two additional years, the 61-year-old Santa Cruz resident credits a different oncologist who put him on an intense chemotherapy regimen - a multidrug concoction of older and cutting-edge therapies that costs about $10,000 every other week. It was a treatment that gave Isgro the ability to continue working four days a week, allowed him to travel to Europe and kept him alive.

But after scans showed his tumors were growing, his insurer, Anthem BlueCross, discontinued coverage of the more expensive drugs in his chemotherapy regimen. Since their use was stopped in early May, Isgro's disease, according to his oncologist, has "exploded." "Clearly, we were keeping a lid on it. It was progressing very slowly and, when we stopped the drugs, it progressed very quickly," said Dr. James Cohen of Los Gatos, adding that all of the drugs he had been combining are approved by the U.S. Food and Drug Administration for colon cancer. Cohen said no amount or combination of medication would cure Isgro. Rather, he hoped to give him a better quality of life as well as more time.

Two appeals to the state Department of Managed Health Care have gone in favor of the insurer. In the most recent decision, issued June 12, two of the three reviewers concluded that the requested therapy would not be more beneficial than the standard, less expensive treatment the insurance company approved. Isgro believes his insurer simply doesn't want to spend any more money to keep him alive. And he's angry. "If my name was Kennedy, do you think they'd try to deny me?" he said, referring to Sen. Edward Kennedy, who recently underwent surgery for brain cancer.

Isgro, who has found an attorney to represent him at no cost, is considering his options. He recently resumed the more expensive treatments with the help of his sister, who paid more than $4,000 out of pocket. He also is contacting the pharmaceutical companies that make his drugs to see if they will help pay for his therapy. "What good does it do to have any kind of national health care plan or state health care plan if your doctor, your primary doctor, does not have the right to prescribe the medications he feels are best for you?" he said. "That's not health care."

What to do if you are denied medical care If your health insurance carrier is refusing to approve treatment recommended by your doctor, you have a number of options. First, contact your health plan. You probably will have to go through the plan's internal grievance process first. If time is of the essence, ask for an expedited review through the state.

Tips to help you get the care you need

• Review your health plan policy. Many are available online.
• Make sure your doctor is aware of your problem. Sometimes the initial denial comes from the medical group, which is charged with managing costs. In any case, your doctor's support is important.
• Request the reason for the denial in writing. Take detailed notes of all conversations, including the date and time of the call and the name of the person you speak with. Save copies of all paperwork, and keep these records in chronological order.
• Act soon. If you wait longer than six months, you could lose the right to file a complaint, ask for an independent medical review (also called an IMR), or take other action against your health plan such as arbitration or a lawsuit. An IMR decision is binding on the health plan, but not the patient. Source: Department of Managed Health Care; Kaiser Family Foundation; Healthcare Liaison Inc.; Chronicle research

Don't Let Your HMO (or Doctors) Kill You

Angling Thru Cancer primarily focuses on the therapeutic benefits of fly fishing. Stu Brown, who inspired the founding of Reel Recovery (http://www.reelrecovery.org/) (see my June 15, 2008 blog, Take a Man Fly Fishing…), expressed this in terms of the healing serenity that fly fishing offers. Okay, so you can’t fish everyday (as much as I’d like to try), but there is reading about the sport and fly fishing destinations to be done, planning that next fishing trip, inventorying and maintaining equipment, tying flies, perhaps building a rod, maybe writing a story about your last trip for your club newsletter, and editing trip photos and videos from past trips. There is hardly an end to the time I can (and do) spend on fly fishing related activities, as well as the ways it contributes to the quality of my life. Fly fishing can provide the same benefits to you as well.

Such things as fly fishing and other activities, family, and close friends contribute immensely to the quality of your life as a cancer survivor. But being a survivor doesn’t stop there. The other side of being a survivor is getting the very best treatment possible, which is the focus of this blog.
If you take nothing else away from this blog, buy the book Don’t Let Your HMO Kill You—How to Wake Up Your Doctor, Take Control of Your Health, and Make Managed Care Work for You, by Jason Theodosakis, MD, and David T. Feinberg, MD. It can be purchased from Amazon.com, whose customers have unanimously given this book a five-stars-out-of-five rating. I have liberally quoted from “Don’t…” in the following where there was simply no better way to make a point than the authors have authoritatively done.

This is not another book on bashing HMOs or HMO doctors. Nor is it about on taking on the medical/insurance establishment in the hopes of bring back the old days of medical care—that isn’t going to happen; managed care, including some form of HMOs, is here to stay. What the book “Don’t…” does do is give you the tools to deal with managed care to achieve the best possible results for you and your health. And when you are a cancer survivor, the stakes for getting the best care couldn’t be higher.

Managed care “happened way to fast for most of us. We continue to hold onto our old-fashioned ideas about doctors and hospitals…about how the patient was first and the bill was second, about how the best care in the world should be available on demand.” Chances are, the older you are the more you still think this way. “Managed care was careful to not let us know that they were changing all that. Their advertisements and brochures assured us that everything was going to be fine. Now we know that’s all a lie…”

Here are the stark realities of HMOs and other managed care plans.

When it comes to the HMO business—and it is a business—“it’s all about money.” Managed care is a volume business. The HMO gets a set fee for a group of customers (aka, patients), whether the patient sees a doctor or not. So there is a real benefit to keeping you out of the doctor’s office. When you do go to the doctor, the HMO will offer him incentives to keep costs down, and moving you down the assembly line as quickly as possible. In fact, when the HMO reviews the doctor’s cases, and sees how little his patients have cost it, he is rewarded with bonuses.

And if the administrator that oversees a clinic does a really good job of tightly controlling costs, he gets a bonus as well. “He’s also rewarded for keeping referrals down, and obviously has no incentive to experiment with new life-saving treatments or tests.” To say the least, in the HMO business, customer care does not seem to be a priority. In the world of oncology medicine, where new (and usually very expensive), innovative treatments, medications, and tests frequently become available, the cards can quickly become stacked against you (without you even knowing it) unless you are a proactive patient—more on that below.

Is your doctor—assuming he, in fact, agreed to keep you as a patient—as enthusiastic about seeing you and as generous with his or her time now that you are an HMO patient?...No?

Before attacking your doctor as simply being a greedy SOB for the assembly-line ways of his practice, here is the situation from his side. If an HMO doctor spends too much time (and money) with patients, the waiting room backs up, and patients put on hold begin to complain to the HMO. The HMO then calls the clinic administrator to correct “the problem,” who in turn tells the doctor he needs to see so many patients a day, and on time. If the doctor persists in taking as much time with patients as he feels necessary, he’s fired. It may not be quite as simple as that, but pretty close.

Sounds depressing, doesn’t it? So, in this HMO world, how do we get the best possible health care? Here is what has worked for me, much of which Theodosakis and Feinberg also advocate in their book (quotes are from the authors of “Don’t…”:
■ Be an active rather than passive patient, or you will never get the care you deserve. Unless you are prepared to stand up for your rights, your HMO will let you down sooner or later. Unless your take an active role in your treatment, your HMO’s need to make money will come in conflict with your need to be listened to, cared for, and treated, and you will lose.
■ Find a doctor with a fighting spirit. There are doctors that say “no” to everything you suggest—e.g., referral to a specialist, tests, interventional and surgical treatments, etc. If you find yourself in the care of such a doctor, fire him or her. For a brief period I had a primary care physician (PCP)—who happened to be on the Board of a PPO medical group—that even refused to refer me to a medical oncologist (this was after I had been diagnosed with stage 4 colon cancer). I also had a medical oncologist that said no to everything except continued systemic chemo—I also fired him after receiving a second opinion from a highly regarded and referred surgical oncologist.
■ Once you find a reasonable doctor(s) (including PCP and medical oncologist), work with him or her. There is no future (but perhaps some liability) in constantly changing doctors, and a lot to gain in developing a relationship with a doctor you have reasonable confidence and trust in.
■ Speak up and get your doctors attention—this is part of being an active patient. You can dramatically improve your care if you speak up.
■ Assume nothing. “If there’s a way for your HMO [and doctor] to cut costs, they will do it,” [at the expense of your health].

Bottom line, it falls on us to work with, and sometimes against, the HMO system that we find ourselves in. But just because we need to work with the system doesn’t mean we need to accept inferior care. I will discuss that and other HMO issues in future blogs. ■

Live Longer, Fish Longer...It's Your Responsibility!

The following article is taken from the June, 2007, issue of Golden State Flycasters' (http://www.goldenstateflycasters.org/) newsletter, "Reading the Water."

In the January/February 2007 issue of Fly Fishing in Salt Water there is an article titled Live Longer, Fish Longer. The article focuses on the necessity for exercise, nutrition, and strength training to prevent illness and injury as you age. To that I want to add the necessity of all men and women being examined for colon cancer.

I was diagnosed with colon cancer November, 2006, and had surgery to remove the primary tumor the following month. During surgery it was discovered that the cancer had metastasized to my liver. Surgery was immediately followed by the commencement of chemotherapy. Take careful note of the following: I had no family history of cancer; and I had no symptoms of cancer!

In retrospect, I had minor passing aches and pains in the fall, which my primary physician wrote off to arthritis and a pulled muscle in my side and told me to take an aspirin daily—no kidding! Thankfully, he also recommended that I get a colonoscopy, although I had only been seven years from the last time I had this examination. Conventional wisdom in the medical field is that you should have a colonoscopy every 10 years—had I not caught the cancer when I did, my oncologist told me I would have been dead within six months!—that is two and a half years short of 10 years! That is something else to think long and hard about.

Having a colonoscopy is something most people dread, but they shouldn’t. It is a relatively simple, painless procedure that men and women should have on a regular basis. What is a “regular basis”? Based on my experience, a colonoscopy should be done about every five years, but certainly more often than every 10 years. But women don’t need an exam, right?...wrong. Women get colon cancer also.

Your doctor and the literature also discuss other forms of colon cancer testing. One such test is a fecal exam looking for blood in the stool. (Sorry, but this is a necessary subject to discuss.) But think of this…such a test is looking for a tumor in your colon that is well developed, to the point that it is bleeding periodically, and it happens to be bleeding on the day you take the fecal sample! By that point, the cancer could very well have, and probably has, metastasized to another major organ—usually the liver or lungs.

My point here is this: there is no reliable test other than a colonoscopy! If your doctor or insurance company attempts to talk you into one of these other indicator tests, my recommendation is to emphatically say No…even if you have to pay for it out of pocket (we’re talking about your life here—this is no time for shortcuts and cheaping out).

What does this have to do with fishing. The title of the above article says it all: Live longer, fish longer. To this end, an organization called Reel Recovery (http://www.reelrecovery.org/) was formed in 2003. RR is a national non-profit organization that conducts fly fishing retreats [see photo above] for men recovering from life-threatening cancer. Their mission is to help men in the cancer recovery process by introducing them to the sport of fly fishing, while providing a safe, supportive environment to explore their personal experiences with cancer with others who share their stories. Reel Recovery is a terrific organization that says a lot about the our sport.

I will leave you with this: Have a colonoscopy exam, and have one frequently! ■

Take a Man Fly Fishing...

The discussion at our first Reel Recovery “Courageous Conversations” meeting at the Big K Guest Ranch near Elkton, Oregon, started easy enough. Our facilitator, Coy, asked each of us to state our full name. That done, we were each asked to share a story about our first fishing experience. Also easy enough, but it didn’t take a particularly bright person to see this was only the prelude to discussions of the real reason we were here: Cancer and its impact on our lives.

I went to the retreat fully prepared to spend the next couple of days with a group of fellows who all had to deal with, or were currently dealing with, cancer—as well as do a little bass fishing with a fly rod. What I wasn’t prepared for was the very touching, personal, and candid stories each person shared with the group. In our “Courageous Conversations” over a two-day period we each discussed our cancer experience…how it had changed our lives, affected our relationships with others, and a myriad of related issues.

When Howard’s doctor told him he only had six months to life, his response was “to hell I do…I’m going to live at least five more years to see my son and daughter graduate from high school.” Instead of opting to skip the discomfort of chemotherapy and just live his final months as comfortably as possible (at only 40-something years of age), as his doctor suggested, there wasn’t any question in Howard’s mind that he was going to fight his disease with a vengeance. Not only was that decision made well over six months ago, but here Howard was at the retreat, looking pretty damn healthy to me and quickly becoming another obsessed fly fisherman.

While the details of the stories were different, the motives of most to fight on were similar. Shortly before Scott was diagnosed with cancer, fate brought a now three-year-old daughter into his and his wife’s lives, which gave him plenty of reason to fight on. For Ed, who we could always count on for a little levity with his great sense of humor, his most important final goal was to finally get his room cleaned up—I think he had a serious fear of leaving an epitaph to the effect “Here Lies Ed, Left a Messy Room for Us to Clean Up.” For others, it was devoting their lives to helping others with cancer cope with the personal and medical issues of cancer, or simply bonding closer with their extend families.

We all arrived at the retreat on a Wednesday afternoon. The next morning, suited up with waders, boots, and a vest (all provided by Reel Recovery) and paired up with a “Fishing Buddy” to hands-on tutor us, we were introduced to the principles of fly casting. After a brief casting lesson, we were taken to the river for our baptism. The group of participants—ranging in age from 40-something to 70-something—took to the fly rods like boys getting their first cane poles to drown worms with.

Reel Recovery (http://www.reelrecovery.org/) was formed in May, 2003, by Stewart Brown and a group of men inspired by Stu’s vision, passion, and courage. Stu, who had recently been diagnosed with a brain tumor, wanted other men battling cancer to experience the healing serenity that fly fishing had brought him. The first retreat was in June of that year. Today, Reel Recovery offers retreats in 10 states.
I doubt any of us had any preconceived ideas about what we would take away from the retreat. Some expressed thoughts that we may be changed men for the experience. For others, it was knowing that we weren’t alone in our fight by being able to share thoughts and feelings with a small fraternity that we could always stay in touch with and count on. For everyone, it was rewarding and a chance to experience Stu Brown’s legacy of sharing the healing serenity that fly fishing provides. But the nine participants of this Reel Recovery retreat experienced more than a few hours of diversion from their preoccupation with cancer. To borrow a line…take a man fly fishing and you take his mind off cancer for the day, teach a man to fly fish and you give him the opportunity to take his mind off cancer for the rest of his life.