Your first visit with an oncologist: what you need to know

What cancer is, and the weight of the word

Few words are as frightening as "cancer." For a long time people avoided it, whispered it or replaced it with "that disease." The stigma still lingers, but the reality has changed a great deal: today many cancers can be cured, and others can be kept under control for many years, with good quality of life, even when the disease is advanced.

Put simply, cancer is a group of the body's own cells that have started to divide out of control and have gained the ability to invade other tissues. Sometimes these cells spread to distant organs, which we call metastasis. There are hundreds of types of cancer, and each one behaves differently. That is why your treatment depends on your type of tumor. See also: is there a cure for cancer yet?

When to see an oncologist

To work out the best treatment plan, ideally you should come to the appointment with two things:

• A biopsy confirming the cancer. This is the examination of a small piece of the tumor under a microscope. Only a biopsy confirms the diagnosis and shows the exact type of tumor.
• Complete staging, meaning the tests that show how far the disease has spread. I explain this below.

But you do not need to have all of this before talking to an oncologist. It is worth coming earlier, for example:

• for prevention, when there are many cases of cancer in your family or a genetic change that raises your risk;
• when a test has shown something suspicious and you want guidance on the next steps;
• to organize the workup, when it is dragging on or you don't know where to start.

If any test is missing, the oncologist will order it. Often the first appointment ends with new tests rather than a finished treatment plan. This is not wasted time: it is what makes it possible to choose the right treatment.

What staging is

Staging is the way we measure how big the cancer is and how far it has spread in the body. It is done with imaging tests such as CT, MRI or PET-CT, with endoscopy or colonoscopy and, after surgery, by examining what was removed. Staging is the single most important guide to treatment and to the chances of cure.

Each type of tumor has its own staging, with different rules. The system most widely used around the world, including for gastrointestinal tumors, is TNM, which looks at three things:

Each letter gets a number: the higher the number, the more advanced. For example, a bowel cancer described as T3 N1 M0 has grown through much of the bowel wall (T3), has reached a few nearby lymph nodes (N1) and has not spread to other organs (M0). Together, this information makes up the stage, which runs from I to IV:

• Stages I and II: the tumor is confined to where it started or has gone only slightly beyond.
• Stage III: the tumor has reached nearby lymph nodes.
• Stage IV: it has spread to other organs.

This is a general rule, and the details vary from one tumor to another. In some cases other information also comes into play, such as the tumor grade, blood tests or the genetic profile. And stage IV does not mean "nothing can be done": today many people with metastatic disease live for years on treatment, and some can even be cured.

What the first appointment is for

The first appointment is, above all, a long conversation. The oncologist gets to know your story, reviews the biopsy and the staging tests, and works out what is already known about the tumor and what still needs to be found out. From there, they put together a plan with you.

What to bring

• The biopsy report and, if available, the report of any genetic or molecular tests on the tumor.
• Your imaging tests, such as CT, MRI and PET-CT: the reports and, if possible, the images themselves, on CD or as a link.
• Recent blood tests, endoscopy, colonoscopy and any other tests you have had.
• The surgical report, if you have already had an operation.
• A list of every medicine you take, with the doses, including vitamins, supplements and herbal teas.
• Your other health conditions, previous surgeries and allergies.
• Cancer in your family: who had it, what type and at what age, if you know.

Putting everything in a folder, in date order, helps a lot. If a document is missing, come anyway: what matters is getting started.

Bring someone with you

Whenever possible, come with a family member or someone you trust. When we are under stress, it is common to forget part of what was said. The person beside you can take notes, remember your questions and help you decide afterwards. You can also ask to record the explanation, if the doctor agrees.

What the oncologist will ask

• How it all began: the first symptoms and how you reached the diagnosis.
• How you are now: appetite, weight, pain, tiredness and how much you can manage day to day.
• Other health conditions, medicines and habits, such as smoking and alcohol.
• What matters to you: work, family, plans, and what you hope for from treatment.

After the conversation comes the physical examination. Answer honestly, without fear of being judged: every detail helps build a plan that makes sense for you.

Questions worth asking

• What exactly is my type of cancer, and what stage is it? What does my TNM mean?
• Is any test still needed to confirm the diagnosis or to choose the treatment?
• Does my tumor need genetic testing?
• What is the goal of treatment: to cure, to control the disease or to relieve symptoms?
• What are the options in my case, and why is one better than the others?
• What side effects should I expect, and what can I do to prevent them?
• How will treatment affect my work and my daily routine?
• Is there a clinical trial that makes sense for me?
• Who do I contact if I have a question or a problem after hours?

Write your questions down beforehand, on paper or on your phone. There is no such thing as a silly question, and you have every right to understand each step.

About numbers and prognosis

Some people want to know everything, statistics included. Others prefer to take it step by step. Both are fine. Tell your oncologist how you would like to receive information. Remember, too, that the numbers come from groups of patients and cannot tell exactly what will happen to you.

Metastatic disease and life expectancy

When cancer is metastatic, one of the most common questions is: "how much time do I have?" It is a fair question, but nobody can answer it precisely. Studies report the median: the point by which half the patients in a group were still alive. This means many people live well beyond that number, and others less. Every person is different, and treatments get better every year.

That is why it is not right to tell a patient how long they will live. It could be sooner; it could be much later. Giving a deadline puts a stopwatch in people's heads, and that stopwatch often gets in the way of what matters most: living in the moment.

After the appointment

• Ask for the plan in writing: the diagnosis, the next tests, the proposed treatment and the dates.
• Take time to decide, when possible. In most cases, a few days to think and talk with your family will not change the outcome of treatment. Ask your doctor whether this applies to you.
• A second opinion is your right, and good doctors welcome it (see how to prepare for one). What matters most is that you feel safe and comfortable with the team that will care for you. Once you have made that choice, trust it and move forward. Going from doctor to doctor in search of new opinions usually brings more doubts than answers and can delay the start of treatment, and with cancer, time counts too.

You don't need to understand everything at the first appointment. It is the beginning of a relationship. Questions will come up later, at home, and it is perfectly fine to ask again as many times as you need.

For information only. It does not replace an individual medical assessment.