Chapter 1: What do I need to know?

When a cancer specialist sees a patient for the first time, he has two priorities: one is to be absolutely certain of the cancer diagnosis, and the other is to determine if the patient is in any urgent danger from the cancer (or from any other medical problems). Later, when diagnosis has been established and the patient is stable, the doctor can then focus on other issues like staging (the level to which the cancer has advanced) and treatment (see Chapter 5 for details on what is meant by stage).

You, as a cancer patient, should have these same priorities. You will want to make sure you know what’s going on, so ask your doctor these questions:  (1) Are you sure it’s cancer? and (2) Am I in any immediate danger from the cancer? 

But you will also have other questions for your doctor: (3) What happens next? and (4) Are you my doctor? If not, who is? Who’s really taking care of me?

Let’s go through these in some detail.

 

(1) Are you sure it’s cancer?

At the beginning of your disease you might not yet have a complete tissue diagnosis. Your doctor should let you know if he is certain it’s cancer, or whether it’s just likely to be cancer. You can treat “certain” but you can’t treat “likely.” You cannot diagnose a cancer with images. Although the X-rays, mammograms, or CT scans may suggest cancer, you must have a tissue biopsy to confirm it. 

As discussed in more detail in Chapter 2, additional information may be needed to refine the diagnosis, such as the cancer subtype, before prognosis and treatment can be started. Your doctor should inform you whether or not additional biopsies are needed, or if the tissue will need to be sent for extra studies before the tests are final. 

When the final diagnosis is available, ask for a copy of the pathology report and your TNM stage. TNM is a staging system that includes the Tumor size (T), Lymph node involvement (N) and Metastasis (M), as described in Chapter 5.

It is imperative to be absolutely certain of the diagnosis, even if it means delaying treatment in the face of serious medical complications. It would be gross negligence or malpractice to start cancer treatment if the diagnosis is uncertain, because serious mistakes can be made in giving the wrong treatment, or by giving cancer treatment to someone who has a benign condition.

In my twenty years of practice I have seen dozens of instances in which cancer seemed certain, yet the final diagnosis showed something else: a young man with large lymph nodes who was thought to have lymphoma but had sarcoidosis instead; a man who was told he had terminal lung cancer, but the tumors turned out to be benign; a pancreas tumor which was removed but turned out to be  inflammation and not pancreatic cancer; and a man whose lung cancer turned out to be prostate cancer, which was easily controlled with hormone therapy. In all of these instances injury or death might have resulted if the wrong treatment had been given.

 

(2) Am I in any immediate danger from my cancer?

By “immediate danger” we mean a risk of injury to your health or the possibility of death. Examples include: a bowel obstruction, bleeding, pneumonia, kidney damage, jaundice, breathing difficulty, uncontrollable pain, and mental confusion. If your cancer is causing these problems, you may need to be hospitalized, if you are not already.

But your cancer doctor might recognize that, although you may feel well, a medical complication may be imminent if the cancer is left to progress without treatment. For example, you may have a small colon cancer that is almost ready to lead to a complete blockage, or a bone that is about to break from a cancer. In any case, it may be necessary to start treatment as soon as possible to stop or reverse the threatening condition. It is still necessary to get the final diagnosis before starting treatment, but it will have to be rushed.

Of course, you may have other urgent medical problems that are not caused by your cancer, such as a heart attack or stroke, and these may cause a delay in treatment.  Ideally, your oncologist will work closely with your other doctors to best coordinate this.

 

(3) What happens next, Doc?

Ask your doctor to describe the immediate next steps—which are probably clear in his mind but may not be apparent to you. Are more biopsies or tests needed? Is there enough information to go ahead with treatment planning? Ask for details and an approximate timeline—refer to Chapters 4-6 for an outline of the process. 

 

(4) Are you my doctor? If not, who is? Who’s really taking care of me, and whom do I call if in case of emergency?

At your first visit with a cancer specialist there is usually the understanding that she will continue to be your cancer doctor. There are several situations in which this is not the case.

First, you may have asked the doctor see you for a second opinion, and it is up to you to decide if you want to go ahead with this doctor or stay with the first you saw. Maybe you don’t feel you can get along with this doctor. Whatever you decide, make it clear in order to avoid misunderstanding.

Another situation that might arise is that the oncologist does not expect or desire to be your doctor. Perhaps the doctor was requested by your internist to see you in the hospital, but cannot accept you into her outpatient clinic for any number of reasons; or perhaps cancer is possible but not confirmed, in which case tests should be ordered by your family doctor; or perhaps the oncologist does not treat your kind of cancer—maybe you need a surgeon instead.

In these situations, the oncologist might refer you to another specialist, or transfer your care back to your internist, or even send you to the emergency department. But he should not leave you with no medical care, especially if you are in any immediate danger. 

Let’s assume that you and one of the doctors you’ve seen agree to continue together. Then there is, in a sense, an unwritten contract between you (see Chapter 7 for further discussion of what this means). Your oncologist has a home—one or more outpatient clinics—which you will visit frequently for exams and treatment. You will get to know the practice pretty well, including the nurses, staff, and other doctors. These wonderful people will be providing much of your care under the direction of your primary oncologist.

The most important thing for now is to find out how to reach your doctor—or more likely the nurse on call (during the day) or the call service (at night)—if you have questions, problems or potential emergencies. Make sure you get the phone number, and make sure they have your number, too. Also, find out where to go in case of an emergency. Most cancer clinics do not have the staff or equipment to manage a medical emergency, and it might be safest if you called in first, then went to the nearest emergency room.

Ask your doctor in which hospitals he has privileges to practice medicine, and where he prefers you go if you need urgent care. In case of emergency, an ambulance will take you to the nearest emergency room if you are unstable. But you’ll get better care if your oncologist is involved, so if you’re stable, try to get to the closest hospital where she has privileges. 

It’s also best to ask whom to call when problems arise, whether they are medical emergencies, prescription refills, appointment changes, insurance issues, or clarification of instructions. Additionally there may be other cancer doctors involved in your care, such as surgeons and radiation specialists. Your oncologist may or may not be on call for you when you are under their care, so be certain to find out who to call for problems.

Finally there is the confusing situation that I call “fragmentation of care.”  It means that you have many different doctors that take care of different parts of your health. It is not uncommon for me to see a cancer patient who has a radiation oncologist and myself taking care of his cancer, but also has an internist for blood pressure and cholesterol, a cardiologist for heart disease, an endocrinologist for diabetes, a dermatologist for rashes, a neurologist for arm pain, and an orthopedic specialist for knee surgery. That’s eight doctors! Not only is it difficult for you to keep track of your doctors, your appointments, and your medications, it’s difficult for your oncologist.

There is no simple way to deal with this problem, which has been created in part by the way our insurance is paid and by malpractice considerations. Here’s what I recommend. Make sure to let your doctor know if you are under active care by any other specialists, and in particular if you are on any prescription medication from that doctor. Your cancer doctor can make an effort to communicate with your other doctors by sending them copies of her clinic notes—if you request it.

Sometimes a cancer clinic visit can save you an appointment with another doctor—for example, you can get your blood pressure checked or your labs for both drawn in one place. But don’t ask your oncologist to refill your prescriptions if he didn’t order the medication in the first place, even if you are running low—it is bad medical practice. Don’t stop going to your other doctors unless your oncologist feels comfortable temporarily taking charge of your other medical problems, such as blood pressure or diabetes, and the communication between your doctors is good.