7 Things I Wish I Knew Before My Cancer Diagnosis

“You need to worry about yourself and not anybody else,” she says. “Women, in particular, are caretakers, and they are always worried about everybody else. ... Don’t be.”

Howard, 58, an executive coach and member of the National Association of Commissions for Women, says holding onto pieces of your life that existed before the diagnosis is key to getting through it. She went back to work within four weeks of getting released from the hospital following her breast cancer surgery.

“Do the things you want to,” Howard notes. “Continuing to do what you enjoy is what keeps you from thinking about it.”

One thing, Howard says, that she wished well-meaning friends and others also knew: It’s up to them to step up if they want to help.

“It’s the whole ‘If you need anything, let me know’ thing,” she continues. “My thing is, if you want to do something for somebody, do something. Send them flowers, send them a card, get them a gift certificate to their favorite restaurant or something like that. Because the majority of us aren’t going to say we need something.”

Take notes

Both Howard and Davis suggest taking good notes throughout treatment — or bringing a person with you who can take notes — so that you can refer to them later.

I am that person for my husband. From the first appointment we went to until now, I am meticulously recording his white blood count, hemoglobin and all of the other “vitals” that doctors watch closely.

Count pennies and look for financial assistance wherever you can

The financial toll a cancer diagnosis takes is severe. Even with the best insurance, costs add up.

“No matter how much a person tries to be diligent and save and have safety nets in place, it’s an impossible financial shock that nobody can weather unscathed,” says Ethan, whose treatment for his type of leukemia will cost up to $1 million.

Howard says she’s astounded by the amount she’s paid over the years for prescriptions and copays. “It is a little surprising … when you add up the numbers over years.”

But help is out there. After losing a prescription that would have cost $6,000 out of pocket to replace, Howard found a company offering coupons on the internet for a free month’s supply of that same medicine. Other online companies, like GoodRx.com, offer discounted medications for people with or without insurance. AARP also provides a free prescription discount card through Optum Rx for savings at 66,000 pharmacies nationwide on all FDA-approved medications.

Ethan, who has worked in human resources for 25 years, offered a couple suggestions that everyone can do before facing the unexpected. First, set up as many bills as possible on auto-pay and route them through electronic payments. It is extremely helpful for managing expenses. Second, purchase a long-term disability insurance policy through your employer. “It’s such an important benefit. But through this cancer process, I was surprised by the number of people I talked to who didn’t recognize what it was and didn’t see it as essential.”

Make your health care team work for you

One action you can do now to get ahead of any diagnosis is to have a primary caregiver and schedule regular physicals. The speed with which Ethan’s primary care physician scheduled a video visit, ordered tests and then referred him to a hematologist-oncologist when the results indicated a blood disorder saved his serious situation from becoming dire.  

Once diagnosed, Howard advises patients to become their own advocates and know when to escalate things with their care team. “Utilize your team to get the things that you need,” she says. Howard recently had issues scheduling an MRI directly. Once she got her care team involved, she had an appointment the next day.

Stock up on patience

Flexibility, patience and endurance are vital when navigating this process, Ethan says. “It’s important to recognize that this is a long journey that takes a lot of endurance. That was a big surprise to me because I never expected it to take this long.” It has required “more patience and endurance than I expected it would.”

Davis adds that she believes that prayer is a powerful tool. “I’m saying this as a scientist: It’s clear that people who have faith in whatever they consider to be God or whatever higher powers they acknowledge — that having faith is very, very important in recovery.”

Share Your Experience: What do you wish you had known before managing a cancer diagnosis for yourself or a loved one? Tell us in the comments.