Things I never wanted to know about cancer treatment but do now

Love v CancerA few months ago as I wrote about being ready for an unexpected illness, I had the eerie feeling God was preparing me for something.

Two days after that column was published, my husband came to my office to tell me he likely had cancer. This was certainly not on our list of spring and summer projects.  When is a good time though?  It’s not like we sit around thinking, this is a pretty calm time in our lives; let’s get that health issue in now while we don’t have anything else going on!  The reality is that there’s never a convenient time for a serious illness, and it’s a good bet that sooner or later one will strike in your family. In our case unfortunately my husband’s turn was first, but we’ve learned quite a bit in the process, so when my turn comes, we will have a better understanding of what to expect. I hope this can prepare you in some way, too.

For us it was the word “cancer.” For you it might be another equally menacing word that sends you into a strange stratosphere of confusion and fear. It takes a while to regain your footing, and in the meantime, things are moving quickly, with a medical team sweeping you along in their process.

If I can tell you anything to do at this point, it’s stop. Stop — if it’s safe to, if it’s not an immediately life threatening situation — and ask questions, do research, find out everything you can about what your options are before making decisions that can’t be undone. Get a second opinion, or third if necessary. Most health insurers will pay for a second opinion before embarking on a complicated (and expensive) plan of treatment, and some require it. Medicare will help pay for a second opinion for medically necessary surgery, and even helps with a third if the first two opinions disagree. It’s extra effort, it’s extra time, it’s an extra cost, but this is your life.

Verify your coverage first, so you’re sure to comply with any necessary referrals or other documentation for the bill to be paid. Many hospitals offer second opinion services; they recognize that you may be looking for an opinion rather than treatment, and will provide their recommendation after examining tests, records, pathology slides and, well, you.

It didn’t occur to us while we were going through it until, thankfully, a friend suggested it and our family doctor encouraged it.  And we were so glad they did.

My husband decided to work with Fox Chase Cancer Center in Philadelphia, where he got his second opinion, because of their experience treating his particular cancer. Since he had already started treatment at a different hospital, we had questions about how our insurer would cover — or not cover — services he would have to have repeated at the new center. That’s where our health advocate came in. A health advocate is a service that provides assistance with things like finding providers for second opinions, working out billing issues, and in our case, finding out if that duplicate service was covered.

Our health advocate spoke directly with the insurance company for us; she knew what questions to ask to get the answers we needed. Health advocates can also help you find out and compare pricing between providers and hospitals, so you can make treatment decisions with more information. Your employer may contract with a health advocate service to supplement your health plan, or you can hire one on your own. Ours was called Health Advocate, and was provided through my husband’s employer.  Your doctor can also advocate for you with your insurance company, appealing care decisions or making a case for medically necessary coverage.

FCCC

Fox Chase Campus

Whether you work with a health advocate or not, it’s a good idea to calculate up front what your maximum out of pocket will be so you can begin to plan. Maximum out of pocket refers to the most you have to pay for your share of the bill. For example, you may pay 20 percent coinsurance of hospital and lab bills up to a certain limit, and then pay nothing additional (on a calendar year or plan year basis). It typically does not count things like doctor visit copays or prescription copays, so those are additional expenses to consider.

When those bills come rolling in, have a system ready ahead of time to deal with them, whether it’s as simple as a folder or more detailed like a spreadsheet or a software program. Managing medical bills under normal circumstances is confusing, with multiple account numbers, billing from various providers, tracking reimbursements and the like, but with the stress of a serious illness it can be downright overwhelming. While you’re tracking, include your travel costs like miles driven, parking fees and lodging costs; they may help on your income taxes. Note that Pocono Medical Center offers a prompt payment discount, and Pocono as well as many other hospitals offer bill forgiveness for uninsured and underinsured patients based on income and family size. It pays to talk to someone in billing to find out what programs may be available to you. Don’t wait until the bill is overdue.

Because it was too far to travel every weekday for my husband’s treatment, we had to stay near Fox Chase for six weeks, meaning there would be travel costs, and lots of them. Fox Chase, like many metropolitan hospitals, has limited housing available for patients. The American Cancer Society has 31 “Hope Lodges” across the country, including one on the grounds of Fox Chase. These offer free housing for patients and a caregiver who are traveling more than 40 miles to get to treatment. There are a few considerations: there may be a waiting list, privacy is somewhat limited since you stay in a bedroom and share common areas with other guests, and your caregiver needs to stay with you.

Another option at Fox Chase is the Coventry House Apartments (thanks to clients for that tip!). These are more private places to stay, and also may have a waiting list. While not free, they are reasonably priced. We were advised it’s best to reserve the entire treatment time even if you are going home for the weekends so you don’t lose your spot. Many hospitals have relationships with local hotels to offer discounted rates for patients. Joe’s House is another source for discounted lodging options, and where we ultimately found our home away from home. Its website is a great resource for transportation and other financial issues, too. In the Philadelphia area, you may also find free housing through Hosts for Hospitals, a program where local residents welcome patients and caregivers to stay in a spare room in their house (hat tip to another client for that one too).

Even when not going far from home, a serious illness carries other hidden costs. things like modifications at home, medical supplies, special meals (or just take-out meals because you don’t have the energy to cook), or hiring help with jobs around the house you either can’t do or don’t have time to do. Gas to travel back and forth to doctors and hospitals can add up quick, and you might find your

Ben Franklin

How can you not like a place that uses Ben Franklin to mark your spot?

car in need of repair from the extra miles. We were especially thankful for free parking; parking fees could have run several hundred dollars had they charged for it.

Nelly Grampp of Joey’s Eagles knows what kind of hardship this can pose; her organization often provides help to families of children with cancer in the form of gas cards, fundraisers, and other assistance (including an abundance of caring), to make the burden a little lighter. The American Cancer Society has many programs to help cancer patients with things such as transportation to appointments, medical supplies, and much more. Don’t be shy about reaching out for help — there are many fine organizations and programs available in the community waiting for you to ask.

Oh- and maybe the most important thing to do for your loved one with cancer- get him a Cancer Card  🙂

Cancer Card

Available at www.StupidCancer.org

 

4 Responses to Things I never wanted to know about cancer treatment but do now

  1. Rick Stryker August 16, 2013 at 11:36 am #

    Thanks so much, Erin, for sharing those wonderfully pragmatic nuts-and-bolts of treating cancer. What a great and thoughtful checklist of how-to and financial steps which would surely be so plain after the fact, but so obscure in the heat of the urgent moment.

    As always, your understanding of what real “financial management” means, every day, has translated a real life crisis into helping anyone who has “ears to hear.” Great job and thanks so much!

  2. Erin Baehr August 26, 2013 at 11:03 am #

    Thanks Rick! We so appreciated the kindness and caring you and Joann extended to us. It went a long way to carry us through!

  3. Paula dangelo September 27, 2013 at 5:24 pm #

    Erin I do hope your husband is doing well. As dan and I are cancer survivors we know where you are coming from. Your article says it all and I hope it will guide others in their time of need. I will be keeping you in my prayers.

  4. Erin Baehr October 6, 2013 at 9:53 pm #

    Thank you Paula, it’s always nice to hear from you. I pray you and Dan are well, and truly appreciate your prayers! I know you understand.

    Erin

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