I’ve just been diagnosed (or someone I love has). Where do I start?

I hear you, friend. As a two-time survivor of ovarian cancer, I’ve been there.

Your mind is a blur.

Or a blank.

Your adrenaline is pumping and thoughts just won’t settle. Thought seems to have left the building completely.

The temptation is to do whatever the first doctor who said the word, “cancer” to you suggested and start FIGHTING THIS THING.

You’re not entirely wrong.

Time is of the essence and whatever doctor gave you the cancer diagnosis is a good place to start IF he/she is highly qualified, or referred you to doctors or hospitals that are highly qualified. He/She may even have already checked with your insurance company before making that referral. (Kudos to them if so.) Why not just take that and move forward? It can feel like too much to seek out multiple opinions and conduct research when your brain feels scrambled.

First of all… BREATHE.

Now breathe again.

And again.

Keep practicing taking deep breaths. Deep breaths that use your diaphragm (known as belly breathing) trigger a natural calming response in the body—lowering your heart rate, increasing your oxygen, and opening up the part of your mind that THINKS.

If you’ve got an appointment with an oncologist lined up, you may very well take that appointment, but I’d suggest you don’t stop there.

In my case, I waited FAR too long to get diagnosed so by the time I was talking to oncologists, they wanted me in surgery immediately. As in three days later immediately. Even so, they were my second stop, so I didn’t do what the first doctor suggested, I sought another opinion. Keep that in mind, even if you’re tight on time.

You always want to make your own decisions. It helps tremendously to take as much control as you can when life feels out of control. Some suggestions for where to start:

1.) Contact your insurer. They should have a “patient navigator” or “concierge” who will be a nurse, to help you find doctors within the network and secure referrals (if needed) and appointments. Incidentally, if you’re on Medicare, they’ve added this support for “principal illness navigation” (PIN) as well—nurses to help you get started finding doctors and treatment options.

2.) Second opinions. These patient navigators should also be able to help you get a second opinion. It’s always a good idea, if you have time, to speak with several qualified doctors/hospitals before starting cancer treatment. Most traditional treatment options—surgery, chemotherapy, radiation, and immunotherapy—are costly and physically taxing, or even damaging. You want to feel like you’ve made the most informed decision you can.

I’ve even known cancer patients who sought second opinions who received a DIFFERENT DIAGNOSIS from other doctors. As in, they came in saying, “My doctor says I have X type of cancer.” And the new doctors say, “Ummm, no you don’t, you have Y.” And “Y” might not even be cancer. I am in NO WAY suggesting that will be the case for anyone. That’s pretty unusual and disturbing, honestly. But people CAN get a cancer diagnosis wrong, so getting a second opinion (or third of fourth—I have a fried who got SIX) makes a huge amount of sense before starting treatment. In fact, insurers may require a second opinion before covering certain treatments.

Keep in mind that insurers are unlikely to recommend doctors or hospitals that aren’t in your network, but free second opinions are available from many of the country’s leading hospitals, and there are also free services unconnected to insurers for just this purpose. You can definitely get one quickly, even virtually.

“BUT, BUT…” you may be thinking, “even if I get one, I have no idea how to prepare for or think through a second opinion.” I get that too. The American Cancer Society has a great overview.

3.) NCI Designated Cancer Centers. While you may take referrals from your doctors or insurer and find care that you’re happy with, you may also want to review the list of National Cancer Institute Designated Cancer Centers. These 72 hospitals have been identified by the federal National Institute of Health’s National Cancer Institute as demonstrating excellence in the diagnosis and treatment of cancer. They are deeply experienced, engage in cutting-edge therapies, and conduct research such as clinical trials.

It’s possible that the doctor or hospital with the most experience with your cancer—the ones you think you want to help you—are outside your insurance plan. You might decide to change your insurance to see those doctors/hospitals. I have a family member who did this to go to Moffitt Cancer Center in Tampa, FL and was very glad she did. Again, everyone’s journey and choices are individual, but if you want to shop for high-quality providers of cancer care, this list is a great place to start.

Regardless of whether you see one doctor or several before you decide upon who will help and treat you, taking the time to shop only makes sense.

Statistics show people visit an average of FIVE WEBSITES when shopping for FURNITURE.

This is your LIFE. If you have the time to comparison shop for doctors and hospitals with an approach and experience that you feel good about, DO IT.

For more guidance, visit other posts on this Blog, go to the Resources page or get The No Bull**** Guide to Dealing with Cancer.