6 questions to ask your doctor about your cancer diagnosis

Doubt, anger and confusion. These are understandable feelings to have, if you or someone close to you discovers that you/they have cancer, or may carry genes that increase the risk for cancer. What does that mean? What happens now? What is cancer?

You may have been given unexpected news and may not know where to turn, who to see, or what to ask. Traditionally a biopsy is performed to address a concern, and the results are given to the doctor who ordered the procedure. For some, this will be your regular family doctor/internist; for others, this could be your OB/GYN, breast or gynecologic surgeon, medical oncologist, radiation oncologist, or radiologist. Who delivers the results to you and their knowledge about the treatment, staging, and prognosis varies.

Cancer treatment centers that diagnose, treat, and follow cancer patients will usually have a group of cancer experts that work with you. This is referred to as a "multi-disciplinary" approach. This team of doctors is experienced with your diagnosisand equipped to answer the questions you may have. Other healthcare providers may not have as much experience with this, and will need to refer you to a specialist for this.

Once you have been told you have cancer, the room may go black. You may not be able to clearly understand, resolve, or accept the shocking news. It's ok; we understand. It may take days - or even weeks - before you are able to rationalize this news and start asking questions. No matter who gives you the results or is the first doctor you speak to, you should be your own advocate and make a list of questions to help you understand what's going on and what to expect for those next steps.

People have different ways of making important decisions, based on the news they have just received. After your diagnosis of cancer, you will be talking to many people and will probably have many questions. In fact, you may not have all your questions answered on the first visit. Depending on your level of involvement in your care, even keep a list of questions to ask on each visit, to each specialist, until they have been addressed. Some of you may only want the basics, while others may want details - and will need to seek even more information from other outside sources (like hereditarycancer.com).

It's not possible for me to list all the right questions that you (or others) should ask your doctor following a diagnosis of cancer, but I can give you six that I think are good to begin the process (using breast cancer as the example):

What is the name of my cancer?
If you had a tissue biopsy (core, incision or excisional), your diagnosis is pretty accurate. The pathologists can be specific about the name, type, and grade of your cancer. This tells us about the kind of cancer you have and what to expect from treatment. Other important prognostic information that is given by the pathology report can be very important in your treatment. Always request a personal copy of your pathology report for your own records.
Was the cancer found anywhere else in my breast tissue?
We usually divide the breast into four quadrants. Cancers that are in two or more quadrants are called "multicentric," which means that the cancer is in more than one place in the breast. Multiple cancers within one quadrant of a breast are called "multifocal." This may be important to the breast surgeon when they discuss surgical options with you.
Are my lymph nodes involved? If so, how many were removed?
Lymph nodes play an important role in the discussion of your treatment decisions. Lymph nodes are small, round organs that act as filters of the lymphatic system that closely follow vessels around all our organs. They are an important part of our immune system, as well. Cancer cells that can spread to other areas of the body can travel through this elaborate system. Knowing how many lymph nodes are involved helps determine the cancer's stage, and affects treatment/prognosis.
What other diagnostic tests will I need?
Basic tests needed to help understand how much cancer is present in your body helps us understand the stage of the cancer. For breast cancer, you will need a mammogram and/or ultrasound. Some women may have other radiologic imaging like a breast MRI, which may help define the boundaries or complexity of the cancer. Axillary ultrasound is useful for checking the lymph nodes. Depending on the amount of cancer and/or stage found a CT scan, Pet CT, brain MRI, and/or bone scan may also be ordered for advanced cancers.
Will I need genetic testing?
Breast cancer is the most frequently occurring cancer in women. One woman is diagnosed every three minutes in the U.S. It usually comes as a surprise to most women, since the majority diagnosed with early breast cancer does not have any symptoms. The strongest risk factors for developing breast cancer are older age and female gender. All women carry these two risks in their lifetimes. Therefore, most cancers are not hereditary or passed down through the family, and there is usually no need for a referral for genetic testing. There are exceptions, of course. 10% of all breast cancer is due to gene mutations and they can often be found through genetic testing.
Will I have referrals before I start my treatment?
As I stated earlier, breast cancer treatment is complex and requires a multidisciplinary approach. Each cancer specialist on your team has a specific plan for you and your cancer, but we all work together to ensure you are getting the best care. Most early stage cancers will be removed through surgery as the first line of treatment. This is done by a breast cancer surgeon or general surgeon. Once the cancer is removed and your stage has been confirmed, you will need preventive treatment to decrease the chance of cancer returning to your breast or body in the future. This is offered by a radiation oncologist and a medical oncologist. More advanced stages of cancer may require medical treatment prior to surgery. Some women who meet the requirement will be referred to a plastic surgeon as part of the team to discuss reconstructive options. When appropriate and available, other referrals are also helpful - such as to a nurse navigator, fertility specialist, genetics specialist, lymphedema specialist, and psychotherapist.