The day Jackson was diagnosed with cancer, it was like being hit by a bus.
“Your one-year-old has cancer.” (Bus.)
“He’s going to need a year or so of grueling treatment.” (Being dragged behind bus.)
“He has a 30-40% chance of survival.” (Hit by second bus.)
I remember walking with our nurse to the registration department to admit my baby for his first round of chemo. It was after the full diagnosis conference, and I felt like I wanted to kick someone. I was mad that kids could actually get cancer. I was mad about the lack of options to cure pediatric cancer, especially Neuroblastoma. I was spitting, hissing, Momma mad.
In my memory, there is literally a light that shines down on this nurse’s head as she listened. She comforted and reassured me that we were doing the best we could based on the research available. That she hated it as much as I did. She spoke in detail about what was going to be the most important part of the plan to beat his cancer, based on her years as an oncology nurse. She gently, but firmly, yanked me out from under the bus.
From our conversation, I knew I had to stop sitting still. Stop accepting that we got the best, without checking it out myself. I chose to not accept statistics. I couldn’t take my son’s cancer away, but there were other things I could do.
Everett and I got busy researching. When it comes to cancer treatment, comfort zone be damned. Go where the best is. Fight with the best medicine. Based on our late nights and private referrals from other cancer parents, we discovered one of the best Neuroblastoma surgeons was at Sloan Kettering in New York City.
Actually getting a second opinion seemed daunting at first. Traveling from Virginia to New York for surgery scared me. Would our insurance cover it? Would we like the surgeon? Where would we stay? Could we afford it?
But that’s the big thing about questions — if you never get the answers, you’ll always wonder if you did the right thing.
It only took a few minutes once we met him to know this was the surgeon who would operate on Jackson. He performed more than ten times the amount of solid tumor surgeries a year than our home hospital. He had published reports we could read and ongoing clinical trials. In addition to great hands and surgical results, he was a kind man. I found that parents were traveling from all over the world to have him do their child’s surgery.
A month later, we were back at MSKCC, but this time to stay for surgery. It was all worth it in that moment when the surgeon came out, still in his scrubs, to tell us he’d removed all of Jackson’s cancer.
It’s been over five years since his surgery and I know we made the right decision by getting a second opinion. The combination of chemotherapy, radiation, stem cell transplant and immunotherapy at our local children’s hospital, with the surgery in New York, just seemed to work on Jackson. He’s still cancer free. Even if it hadn’t, I know we did everything we could possibly do. That means something.
One of the biggest things I’ve learned as a parent is to never second guess getting a second opinion. How else will you know what else is out there or if you’re already where you should be? My advice is to quiet the questions and start the process.
This is how:
- Get to know your illness. I cannot stress this point enough. For us, it was Neuroblastoma. Know it inside and out. Find the hospitals that specialize in your particular illness. Know it so well that you stump your doctors and they have to learn more. Your Google M.D. will help you narrow down locations and doctors.
- Find a place to start. You’re dealing with a lot of information being thrown at you at one time and you’re seriously overwhelmed. Schedule a care conference with your medical team. Bring notes and ask key questions, like: “What’s the most important to get right? “What are other institutions doing? And, “how have things changed in regards to treatment over the past five years?”
- Know second opinions are normal. All offices will be able to assist in this process. If you’re worried about hurting feelings, don’t. If your doctor’s ego gets a little bruised, it’s really okay, he or she will get over it. And if they don’t, that’s why you’re getting a second opinion, right?
- Make a second opinion ally. Our nurse was integral in pulling Jackson’s medical files and putting scan results on a CD and shipping to New York. Jackson’s oncologist emailed as well. If you have an ally in your home doctor’s office, you can ask their opinion for facilities to get a second opinion. But be sure to bring an extra copy yourself; Jackson’s scans never reached the surgeon by appointment time, and we luckily brought an extra.
- Proceed with a second opinion, even if you like your current doctor. There are brilliant doctors with terrible bedside manner and bottom-of-their-class doctors who you’ll absolutely love. Personally, I like brilliant and kind. (Those doctors do exist, by the way.) Find the right fit for you based on what’s important to your illness and course of treatment.
- Talk with your insurance company before going to your appointment. Call the number on the back for your card to know whether the appointment will be considered in or out of network, and what your co-pays will be. I don’t like expensive surprises. Does anyone?
- Keep an open mind. You might go through all of this research, paperwork and travel to meet the doctor and not like him or her at all. It’s disappointing, but you have to follow your gut. It’s what I called a “spirit check.” If something doesn’t sit well, it usually means it’s not a good idea. I mean, hello, there’s such a thing as a third opinion.
Stay tuned. I’ll be writing a second part to “Never Second Guess Getting a Second Opinion” on Abby’s second opinion process that almost didn’t happen.