Cancer Second Opinions Module

When a person comes in for their initial consultation, they bring a multitude of problems. Usually they come for a diagnostic work up after they have already been given a diagnosis of cancer. They arrive at an oncology office in a state of alarm and fear. They also have grave questions about their future life.
The first problem I find is the way in which they were given the diagnosis. Usually, it is through a follow-up call after a biopsy and/or test to tell them that they have cancer. Receiving the diagnosis produces a strong emotional reaction. Most people are shocked and devastated, needing more time to fully comprehend the meaning of cancer.

Most cases are usually straightforward. A diagnosis is made and treatments are initiated. Thus, many patients may not need a second opinion. But when a diagnosis of cancer is made, there is much fear, misunderstanding, and many questions about therapy. All these factors can determine whether a person may live or die-thus it is not unreasonable to a patient to want to have another point of view-what we call a second opinion.

After analyzing the cancer data, the most important thing a physician can give to a concerned patient or family is to explain, in simple terms, all the pertinent issues. Patients wish for state of the art medical care, but they may have doubts about what is the best way to proceed. Although this is when a second opinion can be very helpful, most patients are reluctant to offend their primary physician by doing so. Many patients do not realize that getting a second opinion is standard practice.

Unless emergency treatment is needed, I feel it is very important for the patient and their family/friends to allow themselves time to learn exactly what the diagnosis means. They need to gather information on how it can be treated (surgery, radiation, or chemotherapy), weigh the options (such as watchful waiting a few months for a less aggressive process vs. immediate treatment in the next few days), and understand the prognosis and the chances for a cure.

Most patients are now better informed-often having gathered information gathered from the Web, (Internet or PDQ Physician Data Query/CancerNet), newspapers, magazines or from their well-meaning friends. This information is often very mixed and confusing.

It often takes time and several explanations going over the same questions for an anxious and fearful patient to understand and be satisfied with the medical recommendations. Often there are several approaches to a problem and sometimes there is no definitive answer, given the limitations of current medical science.

To help patients make proper decisions; I make a point of informing them and their family/friends at the initial visit that I have two rules in my practice (included on the tape recording that I do for all my consultations). If they are coming for a second opinion, I clarify that they will continue their care with their primary oncologist.

I can recall a case where mine was the 9th opinion. This reflects how it may take multiple discussion with your doctor or with another independent unbiased physician to arrive at a conclusion that can give you peace of mind and satisfaction about which is the appropriate therapy.

Following are two points of view about second opinions as a part of the supportive care process.

None of us are prepared to be told we have cancer. It's like a membership in a new club, one we didn't know existed, didn't apply for, and don't want to belong to. Everyone seems to treat us differently. All of our old priorities and life suddenly change. We need to know RIGHT NOW what is going on, how bad the cancer is, where it is, where it has spread. What are the choices for treatment? How successful is each one? What are the risks and side effects of each treatment? Is one better than another? Why? What should I do? How much time do I have to decide? For that matter, how much time do I have?

Thank God you have never had to ask and answer these questions before. Somewhere in the back of your mind, you were worried about an auto accident or breaking a bone, or needing an operation, but you have absolutely no training or experience in having cancer. How do you make decisions about what to do? You find a physician you trust. Usually a cancer specialist (Oncologist) is involved in your care. This makes sense. Oncologists know about cancer. However, there is so much information about cancer. Some of it is really valid and reliable, in books and medical literature, and from your doctors. Some of it may not be reliable: what your friends or the Internet tells you. How do you tell the difference?

First, believe what your doctor tells you. She or he has spent years training, learning, and understanding this process we call cancer. Second, read all you can. However, making these vital and critical decisions about your cancer care is different from most decisions we have made in our lives. Almost always we choose between two things we like: steak or chicken? A Ford or a Chevy? Buy this house or that one? Fact is it wouldn't be the end of the world no matter which of these decisions we made. Both choices, then, are in a sense "positive".

When making a decision about cancer treatment, our choices are things we don't want, instead of things we do want. I don't want an operation (no matter which one you suggest). I also don't want radiation therapy. I don't want chemotherapy. I don't even want a biopsy!! Much less the blood tests and CAT scans and all the doctor visits. So we are not used to making choices about things we don't want. It feels strange, and it is strange.

That's why it is so important to be able to talk to a health care professional about these choices. Best is someone who knows what the choices mean good and bad. Often your "main-MD"-perhaps your oncologist can explain all these choices to you. You may be quite happy and satisfied with these discussions. However, you have no prior experience with making these choices, or making this kind of choice, about things you don't want.

So a second opinion is one way of exploring the choices. It's an important one, to help you be very sure that you understand what the choices mean. Some choices in life are very clear: it does not require a second opinion to know the significance of pulling a parachute ripcord or not pulling a ripcord. However, before you go up in an airplane, to do skydiving, would it be important to know which brand of parachute (and parachute "packer") is reliable. Of course!! You do this before the plane takes off.

In cancer treatment, even though there is a great emotional need to "get going"-I want the treatment yesterday, there is rarely an emergency medically. Most of the time, nothing bad will happen if a few weeks go by while you make sure you understand the difficult decisions that you need to make. If you have a need for additional discussion (and maybe you aren't even sure if you do), a second opinion is one way of being sure you understand the choices.

This should not be a threat to your regular doctor. You should be "partners" in your care, and you can simply explain that, "Yes, I am really pleased with your care, and I want you to continue to take care of me and I would also love to have some additional input from someone who maybe has a different perspective or angle.

After all, who is the one that is most important to please and be satisfied? You are! Do not worry about hurting the doctor's feelings. He/she is a professional, and this is not the first time another physician has "looked over" her/his care. It begins in early training, and happens every day, in some way. As a matter of fact, your physician should welcome the opportunity to have another consultant review and approve your care decisions, or perhaps suggest a new, clever, or novel idea that might be to your benefit. Either way, you win. Yes, there are some instances when you have some basic disagreement with your physician, or there isn't the "fit" that there should be. Sometimes you do need to change physicians. But that isn't the usual reason for a second opinion. Most of the time you simply want to be sure that there is no "stone left unturned" in your care. Few people change oncologists-he or she becomes a really important person in your life.

What does the second opinion consultant do? He or she wants to know everything about your previous diagnosis and treatment. You usually bring copies of all your x-ray films, and all your records. It's a good idea to have a copy of all your records anyway, in case you travel and are away somewhere and become ill. Often the consultant will wish to look at the pathology slides to verify the type of cancer that is present. You need to have copies of your previous consultations and opinions, hospital records and discharge summaries, and especially the pathology reports (that give the cancer diagnosis) and the operative reports of any surgery you have had for the cancer. The consultant reviews all this material and examines you. Often you will bring your spouse, significant other, family members, or a close friend with you, to share in the discussion and to help you remember the discussion and make decisions. It may be helpful to bring a pad to take notes, and a tape recorder to keep a record. The consultant will then go over all of the findings with you and especially discuss and emphasize the current and future decisions to be made. It would be especially helpful if you bring questions of your own; to be sure you have no unanswered questions or problems when you are done. The consultant will then prepare a written report, which will be sent to your physicians, and often to you as well. She may call your doctor on the phone to have an immediate discussion of your findings, especially important if you are about to have surgery or begin a new treatment program, and are waiting for "agreement".

Should you tell your present physician about the second opinion? Yes!! It is in your best interest that all of your doctors know all the facts and opinions. Your health is at stake, and unless you have had a major disagreement with your physician, and are using the second opinion as a pathway toward changing doctors, it is to your advantage to share all the information. Your physician is your partner in the pathway toward success.

Specialists usually make Cancer treatment decisions, and their training is relatively uniform and sophisticated. There are seldom any major differences in the standard ways of treating various cancers, and cancer specialists generally know what the choices are and what the risks and complications are. There may be advantages and disadvantages of each treatment choice. What a consultant may help with is:

Many insurance and health care companies, who will pay for such opinions, have acknowledged the importance of second opinions. It is becoming the "normal" and appropriate thing to do. My experience is that second-opinion consultants are very respectful of the hard work and dedication of your principal doctor, and are careful to be entirely professional and to give appropriate credit and validity to those decisions already made. After all, their patients have obtained second opinions, too!!

Doctors other than oncologists diagnose most cancers. They are diagnosed by family doctors, gynecologists, ear-nose-and-throat doctors, and so on. Some of these doctors do not encourage their patients to seek second opinions. These doctors may be afraid of losing revenue, threatened by having their patient believe some other doctor is more knowledgeable, or just do not want to bother consulting with other physicians. The patients of these doctors probably are most in need of the second opinion.

The critical element in successfully treating cancer is in promptly receiving the proper treatment. We know that cancer comes in a hundred different varieties. There is no relationship between breast cancer and brain cancer other than the term "cancer" and the fact that they are both involve rapidly dividing cells. It is impossible for one primary physician to be informed on the latest and best treatment for every type of cancer. Furthermore, it is impossible for one specialist, such as a surgeon, radiotherapist or oncologist, to know the very latest and best treatment in his own specialty for every one of the more than one hundred different types of cancer.

At lunch with a medical oncologist, I asked how often he treated a patient for cancer without a second opinion. This man, in his sixties, replied that he had never in his career treated a cancer patient without a second opinion. Furthermore, he always insisted on a second opinion from someone other than an associate of his. This was the rationale:

I thought this was a profound statement. I wished that every doctor treating a cancer patient could hear this. My conclusion from this statement is that any doctor treating a cancer patient without a second opinion is not practicing medicine, but trying to play God. I thought it was only God, who was supposed to be perfect, know everything and never make a mistake.

These thoughts were substantiated in the draft of the May, 1985 publication of the National Institutes of Health entitled cancer control Objectives for the National 1985-2000. It states, "The application of the state of the art treatment is complex. At all levels of the health service deliver system-from the primary care physician who has initial contact with the patient to specialists directing the cancer treatment-physician knowledge is not yet optimal. That knowledge should include an appreciation for state-of-the-art treatment information and an interest in ensuring early multidisciplinary decision-making. For about 70 percent of cancers, optimal therapy derives from multidisciplinary discussions. The relative rarity of some of the most responsive tumors means that proficient treatment can be maintained only at some major cancer centers. Malpractice considerations may result in physicians selecting "safe" therapy, which neither offers significant risk nor the chance of cure. A major determinant of outcome for most newly diagnosed cancer patients with curable disease hinges on early multi-disciplinary treatment planning and the availability of expertise and resources to carry out such a treatment plan.

"A multi-disciplinary panel is an excellent way to obtain other opinions as well as advice for treatment planning. The purpose of the panel is to review the referring doctor's proposed treatment and approve it or recommend additions or alternatives. The recommendations of the panel are discussed in frontof the patient. The panel's comments are written down for the patient and a copy is sent to the referring doctor.

This idea of holding all discussions openly and frankly in front of the patient and any relatives or friends she/he cares to bring is unique in the medical world. Not only do a majority of patients leave with a recommended course of medical treatment, but every patient also leaves with an improved state of mind. They all feel better more confident about what is lies ahead.

The question is what to do if your cancer returns unexpectedly after being in remission or metastasizes during treatment.. The basic rule is don't panic. You got through this once, you can do it again. The most frightening time was when you were first diagnosed. The idea of having cancer was beyond belief. But you took treatments and you got it into remission. With a little planning, effort and luck, make up your mind you can do it again.

Possibly this fact, that seems like the worst possible news, is really a gift in disguise. Do not jump to any conclusions. Because you had cancer, anything that looks like cancer, smells like cancer or seems like cancer will be diagnosed as a recurrence or metastasis for you. Actually you may not have cancer at all. It may be scar tissue on an x-ray or an unexpected number on a blood count. Have a biopsy to be certain it is cancer. And then it may not be a recurrence of the same cancer but a totally new, different and readily treatable cancer.

But for the purpose of this article, lets assume it is a recurrence or metastasis. Should you get a second opinion? Without a moment's hesitation, the answer is a resounding YES! Obviously you have a good doctor because that doctor brought you through successfully the first time around. But now you have it back. Something is wrong. You should not have it back when you were not forewarned that it would return. Therefore you need a qualified, independent second opinion as to how to successfully treat this once and for all so it will never return.

A second opinion is not going to your doctor's assistant or golfing buddy. It is going to a different institution and seeing a qualified specialist in treating your specific type of cancer as to how to proceed. Possibly the best second opinion is a multidisciplinary second opinion where a medical oncologist, radiation oncologist and surgeon sit at the table with you and explain your cancer and offer their suggestions, each from their own specialty. One doctor does not tell you what another can or cannot do. Some physicians are able to do things others think are impossible.

A list of institutions around the United States offering multidisciplinary second opinions is available from the Cancer Hot Line at 8 00-433-0464. You have everything to gain and nothing to lose. Getting a second opinion, particularly in the case of recurrent cancer, can improve the quality of your life and possibly save it.

R.A. Bloch Cancer Foundation, Inc.
4400 Main Street, Kansas City, MO 64111
816-WE BUILD (816-932-8453), 1-800-433-0464, Fax 816-931-7486
http://www.blochcancer.org/

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Supportive Cancer Care: by Ernest H. Rosenbaum, MD & Isadora R. Rosenbaum, MA
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