The Vital Intangibles

BY RALPH BLUM

After living with prostate cancer for over two decades, there are some things that really stick in my mind as a “need to know” for anyone newly diagnosed with the disease. The most relevant of these is the major impact you can have on your own healing.

Greg Anderson who, after surviving “terminal” lung cancer, founded the Cancer Recovery Foundation, once said, “Retaining a medical team without doing everything you can to help yourself is like attempting to walk with one stilt.”

Your doctors will primarily be focused on attacking the tumor.  It is your responsibility to support your mind, body, spirit—and your immune system.  When I was first diagnosed, my ignorance about the immune system was monumental. Since then I’ve learned that my brain is constantly sending my immune system chemical messages which, for better or worse, influence its ability to function effectively.

A diagnosis of cancer tends to be overwhelming, and can generate feelings of disempowering fear and of loss of control. These responses have a negative physiological impact on the immune system. So reclaiming a sense of being in charge of your own life and health is an important foundation of the healing process.

There is growing evidence that creating high levels of well-being with proper nutrition, adequate exercise, stress management and emotional support is as necessary to your recovery as whichever cancer treatment you choose.

After understanding your diagnosis you will have several treatment options. Depending on the results of your pathology report, your doctor will recommend what he considers to be the best treatment program for you. But you need to play the central role in this decision. A passive, “Whatever you say, doc,” attitude will not serve you.

Before you commit to any treatment it is essential that you thoroughly research it, and are convinced that it is the right treatment for you. It is equally essential that you follow it with conviction, with the belief that it will be successful.  Hope, optimism, and excited belief are the great intangibles. The correlation between belief in treatment and effectiveness of treatment is extremely high.

Remember: Your medical team will be addressing just one part of your cancer journey. It is up to you to focus on your general health, and to examine your attitudes and your beliefs. According to a relatively new field of health psychology called “illness representation,” your beliefs and expectations really do impact the outcome of the disease.

 

Harmony & Spirituality Practice Cultivating “Wa”

BY RALPH BLUM

Many years ago, I was invited to attend a breakfast fund raising event at the Bel Air Hotel in West Los Angeles. Ted Turner was attempting to squeeze donations from a room full of Hollywood moguls. The private dining room was filled with sunlight, and I remember sitting there, bored, zoned out and forking segments of my eggs Benedict around, when Turner’s Savannah chain gang growl poked a hole in my reverie: “I tell you, it’s spiritual,” he exclaimed. “And you know how I know it’s spiritual? Because I paid cash money for it.”

To this day, I have no idea what “it” was. But Turner’s logic—his working definition of “spiritual”—made me smile and stuck with me to this day. And while I’d rather steer the long way around when it comes to spiritual matters in general, I have become a devoted fan of harmony, as in feeling at peace. What the Japanese call Wa. Bottom line: I try not to regret anything that has already happened, and not to worry about what might happen. And in a way, I think this has played a role in my coming to terms with prostate cancer.

When discord hobbles me, throws off my vital signs, fogs up my reasoning, I feel it has a definite impact on my immune system. Efforts to counter mindless anxious behavior through breathing and light meditation may help, but in my case, only minimally. Instead, whenever I encounter discord, or more to the point, when I catch myself creating or contributing to the dissonance, I retreat from that discord as fast as I can. This happens in three steps:

First, I catch myself, recognize what’s happening, mark the moment: Blum, you’re doing it!

Second, I apply the brakes, stop what I am doing as best I can. Do whatever it takes to get into reverse and back away. I think of this step as “circuit breaking.”

Third, I substitute different behavior, consciously find a better way to look at what is disturbing my peace and serenity, my wa.

Example: Despite my expectations, my PSA has risen. And I’m suddenly scared s—tless my next Gleason score will have deteriorated from 3 + 3 to 3 + 4, and that I will start feeling pressure to “act,” to begin radical treatment. As a Remedy, I hold a conversation with myself,

Me:  How many years has your cancer been in the seminal vesicle?
Myself: About six.
Me: So six years out of the capsule?
Myself: Yup.
Me:  Is the cancer in your bones?
Myself: No.
Me: Well, how about the lymph system?
Myself: Don’t think so.
Me: So And how old are you?  

Myself: I’ve been around the sun 80 times.
Me: So in 10 years you’ll be 90?
Myself: You might look at it that way.
Me: And your cancer, basically untreated, has been stable for almost a quarter of a century.

Myself: Something like that.

Myself: So given hour history, what kind  of prognosis would you expect for the years to come. . . ?

The Q and A continues until I find myself relaxing, counting my blessings. This sounds like pretty simple-minded stuff. But not getting caught in the quicksand of negative emotions or behavior that is toxic, just staying in the “here and now,” is a spiritual practice that helps maintain Wa. I do my best to stay in the present moment. But when I slip, ASAP after the fact I review what has happened. I replay what happened in my mind with different features, focus on a better way to handle it next time. And some day perhaps I’ll find out what spiritual stuff Ted Turner paid cash money for. And place an order for myself. A baseball team. An ocean going racing yacht. A date  withJane Fonda. CNN. A day at the beach. . .

To each his own kind of Wa.

More to come.

Support Groups: Pluses and Minuses

BY RALPH BLUM

Most men are uncomfortable talking openly about sensitive issues—painful emotional stuff like their fear of incontinence, or of never having another erection—and many feel that support groups, where such things are talked about, are not for them. However, my own experience in the medical minefield of prostate cancer taught me that finding the right support group is one of the best things you can do for yourself following a prostate cancer diagnosis.

                                                                       

A good support group provides you with an opportunity to discover how other men have resolved the challenges and coped with fears that you are currently facing—men who have actually lived through surgery, radiation, cryotherapy or hormone blockade. What’s more, your local support group is often your best resource for recommendations and referrals, for learning the names of the most experienced (and best liked) prostate specialists in your area.    

           

Often you will find that the volunteer leaders of support groups are unique individuals who, while waging their own battles against prostate cancer, have dedicated countless hours to research, and who willingly share their experiences with those just beginning the journey. Some groups have expert speakers—doctors, social workers, psychologists specializing in intimacy issues that impact both men and their spouses—who can offer helpful information and can answer questions from first hand experiences that relate directly to your problems and concerns.

                                                                                                           

However, not all support groups are created equal. A group’s effectiveness depends a great deal on its members. Are they mostly upbeat and willing to share their experiences? Do they mainly discuss possible solutions to problems? Do you feel that you can learn something from them? Or do the members mostly complain? Is there an atmosphere of doom-and-gloom? You don’t want to leave feeling more depressed than when you went into the meeting!

                                                           

Another thing to keep in mind is that every support groups has members in different stages of the disease, ranging from localized and curable, to very advanced. If you have never been to a support group before, you could become frightened or depressed by what you hear. If this is the case, either you are in the wrong group, or you may be simply be more comfortable with an internet site like Prostate Cancer Blue Community website http://www.prcibc.org/ that connects you with other men in your same category of prostate cancer.    

                                                                                                                                                   

In most states you can find support groups that provide treatment advice as well as emotional support. The American Cancer Society’s Man to Man chapters are nationwide; most of them welcome spouses, a few prefer that women and men meet separately. To locate the Man to Man chapter nearest you, contact the American Cancer Society at 800-227-2345. You can also go to http://www.cancer.org/ for their online prostate cancer support group. Other excellent resources include Male Care, “Men fighting prostate cancer together” (http://www.malecare.com/), Michael Milken’s Prostate Cancer Foundation (http://www.pcf.org/)  and USTOO International (http://www.ustoo.org/).

                                                           

So even if you are one of those guys who look down on support groups as crutches for sissies, I suggest that you at least give your local group a try. At the very least, you will be able to query a number of men about their experiences with doctors in your community. At best you may develop, as I did, very special prostate cancer friendships with men you can call at any time of the day or night, men who understand what you’re going through. And if you’re lucky, you might run across a uniquely knowledgeable group leader who can give you exactly the information you need to make the right treatment decision.                                                                                                                     

No doubt about it. There is strength in numbers.

The Diagnosis: Eight Basic Rules for Coping with Unwelcome News

BY RALPH BLUM

There is no easy way to receive the news that you have cancer, but it is important to realize that prostate cancer is typically not a death sentence. In fact the vast majority of men diagnosed with prostate cancer have the low-risk form of the disease, and will live a normal life span. Even those men diagnosed with the more aggressive kind of prostate cancer have effective treatment options available to them today.

Nevertheless, the psychological impact of receiving a cancer diagnosis can leave you reeling. You’re in shock, disoriented, and filled with fear. As one urologist told me, “Once a patient hears the word ‘cancer,’ most of what I tell him after that won’t be absorbed.”  So when it comes to being an informed patient, here are some basic rules:      

Rule #1: It is critically important to understand clearly your diagnosis and proposed treatment options. So always have your spouse or a friend accompany you to your appointment with the urologist, to take notes and to ask the crucial questions which, in your state of shock, may not occur to you at the time.

Rule #2: Recognize and resist your natural desire to rush into treatment. A combination of the urologist’s preference for surgery and most men’s terrified “just get it out” attitude, leads to tens of thousands of unnecessary radical prostatectomies every year—unnecessary because all of these men would have lived just as long without surgery, without the risk of losing both potency and normal urinary function and greatly compromising their quality of life.

Rule #3: Do not to waste your energy asking yourself, “How did this happen? Did I bring this on myself?” Regardless of your eating habits, exercise regime, or anything else that might contribute to getting this disease—you did not cause it. Prostate cancer is incredibly common. Like diminished sight and hearing, for many of us it comes with advancing age.  In the words of one well-known prostate oncologist, “If you are over seventy, and you don’t have prostate cancer, chances are you’re a woman.”

Rule #4: Be proactive. The days of the passive patient with a “Whatever-you-say-Doc” attitude are over. When it comes to obtaining the best care and treatment, the single most influential decision maker is you.  Do your own research, and become totally involved with your doctor in the decision-making process. And remember: this is the tortoise of all cancers. In most cases, time is on your side. So take whatever time you need to educate yourself. Learn what questions to ask your doctor about all your treatment options. Make sure you are aware of their short-term and long-term side effects.

Rule #5: Attend prostate cancer support groups. The leaders of many of these groups have dedicated countless hours to research; they are a fund of valuable information about different treatment options. Equally important, they are a trustworthy resource for locating the best doctors in your area. It can also be helpful to talk with men who have successfully navigated the medical minefield of prostate cancer. Never forget: every cancer case is different; what worked for other men may not be the right treatment for you.                                                          

Rule #6: Stay calm, be cool. Beware of terrifying yourself by thinking that every negative aspect of this disease applies to you. The very process of gathering the information you need to make an informed decision can be scary as hell. Do not be panicked by all the numerical tables, statistics, and graphs. Statistics measure populations; they do not apply to individuals. Statistics and pathology reports only tell part of the story. What is missing is the influence exerted by all the variables and intangibles that make you an individual.

Rule #7: Prostate cancer is a complex disease with many treatment options. So be prepared to take conflicting opinions from reputable experts in your stride. I have yet to encounter two urologists who agreed on everything. Which is why you need to trust your own instincts in determining which doctor and, if called for, which treatment is right for you.

Rule #8: Get a second opinion. Even if you are satisfied with your urologist, it is vitally important to get a second opinion, preferably from an independent board-certified medical oncologist—a cancer specialist—and if possible, an oncologist with a specialty in prostate cancer. Obtaining a second opinion doesn’t imply that you don’t trust your doctor. On a decision this important, you owe yourself the benefit of more than one person’s thinking.

Finding an oncologist is a cinch. Finding the right oncologist may require traveling to a major cancer center to talk with a leading edge specialist. Insurance will almost always cover the cost of a second opinion. You will need to take with you a complete transcript of your medical records, including all pathology reports and slides. And in order to get the best out of your appointment, take a written list of questions. And a friend. And a tape reorder.

Finally, I have to say it again: If you have just been diagnosed with prostate cancer, resist the impulse to rush into radical treatment that is quite possibly unnecessary and almost guaranteed to adversely affect the quality of the rest of your life. But if you do decide that your cancer calls for immediate treatment, have absolute belief in the effectiveness of the treatment you choose.