My spine tumor: a lesson in why we all need primary care
To repeat from twitter, here’s the TL;DR: your best shot to beat an aggressive disease is to have a dr. you trust and establish a regular visit cadence even when you feel fine. I know this both from the data and b/c I now live it.
Now to begin, there’s two questions everyone asks when they find out you have a spine tumor: Are you ok? How did you know? Yes, I’m alright (it’s all relative), and the how did I know is what this is about, so let’s start there.
Caveat: This is not particularly tight or articulate (I’m an editor, not a writer) plus I’ve got other stuff going on, but hopefully you get the point.
Here’s my journey:
1. My lower back hurts in 2018, not sure what’s going on, but I ignore it
2. I go to a gynecological annual appointment and find 2 masses on uterus and ovaries. I think I have solved problem 1.
3. I go to get a second opinion on the gyn masses and by complete accident, I find out that the real problem is a tumor on my spine.
4. I never would have found the tumor on my spine if I didn’t get a second opinion at a fancy clinic that’s not affordable, difficult to access, and out of reach for the average American.
5. After the diagnosis, waiting is expensive exhausting, confusing and it sucks.
6. I found the most incredible surgeon at Memorial Sloan Kettering who saved me. Again, geography and privilege played a role.
The two takeaways from my experience:
1. When it comes down to it, if I had a better doctor at the front line of my treatment, I think I could have avoided an expensive and exhausting journey through the healthcare system for 2 years.
2. In an ideal world, I would have gone to my primary care doctor, had an MRI, found the tumor, gone to Sloan and had it all taken care of 2 years ago. But I didn’t, and there’s lessons there.
In my line of work, I ask myself every day: How do you get the right people, to the right doctor, at the right time, to catch things early? After becoming the patient, here’s the TL;DR: I think your best shot to beat a disease is to have a dr. you trust to navigate you through the cockamamie system. You need to establish a regular visit cadence even when you feel fine. I know this b/c I now live it.
This is my story and I hope it inspires you to get to your own trusted doctor. I won the lottery in catching my tumor early, but there’s certain navigation skills I had in order to get lucky..
Taking this one at a time, step 1: My lower back hurts, not sure what’s going on, but I ignore it
Imagine this, you have lower back pain. It’s nagging at you and it won’t go away. What do you do about it? That’s where my story, and many other diagnostic odysseys, begin.
When I had pain in my lower back, I assumed it was from sitting like a hamster at my desk for 14–16 hours a day. I did not assume it was a tumor b/c Occam’s razor & I am not a hypochondriac.
When the back pain got to a certain point in 2018, I went to a chiropractor/physical therapist. B/c I had no idea who else to ask. When they did a nerve test and told me I needed to get a spinal MRI, my response (informed by my 0 hrs of medical training) was, “I don’t need to pay $2k as a malpractice insurance policy for you, so let’s just go over some stretches I can do.”
Why was I an asshole? Well, Musculoskeletal is tricky because something like back pain can be debilitating and, as a doctor, you are there to help take away the pain of your patient; BUT, doctors way too readily prescribe costly tests ($2k+ for an MRI) or surgery when your 1st line of treatment could (and in most cases should…) be physical therapy. So I assumed I was being swept up in a series of unnecessary tests. I didn’t much care for that.
Yes, I did send this nice chiro an “I’m sorry for being an asshole, I had a tumor and you were right that I should’ve been checked out” note. But I digress, the point is that I missed opportunity #1 to catch this b/c i didn’t trust the assessment and avoided care.
There’s two main axes on which people avoid care: access and affordability. I could write an entire rant on why this country is fundamentally broken because that access v. affordability graph is pitiful (and I plan on spending the rest of my life on that issue); but, my story is more about what happens when you have both of those variables in place. I’m blessed with geography (NYC has a lot of docs) and a job with insurance, so why didn’t I go do this basic thing and get an MRI?
The truth was I didn’t have anyone trusted in the system who I could turn to and say, “hey, is this normal?” I thought I was part of the machine of unnecessary tests. It’s really goddamn expensive (in $ and time) to take care of yourself, but pretending to be fine is free…until it isn’t.
Diagnostic odyssey step 2: I go to a gynecological annual appointment and find 2 masses on uterus and ovaries. I think I have solved problem 1.
Both my primary care and Ob /gyn had stopped taking my insurance and I gave up finding others. Everyone knows or experiences this along the way. Insurance sucks. So at this point I’d been avoiding annual physical and gyn for the past 2 years b/c I *felt* healthy and I could always go to urgent care if I didn’t…
The next point, and I can’t emphasize this enough, is that skipping out on primary care w/ a trusted provider means skipping out on your best chance at early detection. AND, urgent care /= primary care. And here’s why that was my next biggest mistake.
The thing about urgent care is that a doctor is seeing you at a snapshot in time. They have no idea who you are. And they’re usually getting paid on a fee for service basis, which means that their income isn’t predicated on you getting better, it’s predicated on getting as many patients in the door as possible. And when the system is optimized for getting people in and out, doctors aren’t incentivized to do things like call your previous providers for your records or spend more than 5 minutes with you or check in with you after the appointment to see if your symptoms subsided.
Don’t get me wrong, fee for service urgent care is great if you have a simple UTI and need antibiotics. It’s not great if you need to piece together that a UTI could be a part of a bigger tapestry. And disease is almost always part of a bigger tapestry.
So yes, I went to *a* doctor during that year, texted with telemedicine about my sinus infections etc, but no one caught anything until I went to my Old gyn…
Miraculously, my former gyn started taking my insurance again, and she listened to my story about lower back pain, felt my thyroid was enlarged and said she felt like something might be off even though blood work was ok. She did an ultrasound and that’s where she found the first masses on my uterus and ovaries. Keep in mind, we still don’t know there’s any other masses at this point, but now we know there is *something* there.
The lesson: I agreed to the ultrasound b/c the doc knew my history and I trusted her. Trust is everything in a doctor-patient relationship. Additionally, she prob wouldn’t have known my body’s version of normal had I not been seeing her over 7 years.
Step 3: I go to get a second opinion on the gyn masses and by complete accident, I find out that the real problem is a tumor on my spine
Now, it’s never fun to hear the word “mass on uterus” in this context, but I was told, “Looks a little weird but no problem, we’ll do a couple of surgeries to take it out.”
IMPORTANT: Friends, when a doctor recommends surgery, the correct answer is, “ok, but I need a second opinion first.”
The diagnostic odyssey doesn’t stop at first detection. Even if you like your doctor, you get a second opinion before going under the knife and here’s why…
This doc had the best intentions, but if I listened to her surgical recommendation, I would’ve had the completely wrong surgery and wouldn’t find the *real problem* until later.
At this point in story, you may be saying, wait what? Masses on uterus and ovaries, I thought we were talking about spine? I’m getting to it, hold on…
I have a boss who would rather drink bleach than be mentioned in a tweet or blog, but I owe him a lot, so I’ll refer to him in vague terms. When I went to tell him about a quick gyn procedure I’d need time off for, we had this convo:
Me: “look, the doctors found something and I think I need to get surgery so let’s just talk about how to schedule xyz around that.”
Boss: “Did you get a second opinion on surgery? B/c if not, you need to go to <Fancy Clinic>”
Me: No, it’s not a big deal. Plus, <fancy clinic> is for sick people who need it and I’m fine.
Boss: “Let me give you some advice: stop messing around. You need a 2nd opinion. Go to <Fancy Clinic> and chock it up to research if you can’t stomach it any other way.”
You may not have a boss to talk sense into you so let me say it one more time: SECOND OPINIONS ARE YOUR FRIEND AND COULD SAVE YOUR LIFE.
So friends, I decided to go to <Fancy Clinic> and it was not easy to commit to. <Fancy Clinic> is expensive as hell (air travel to get there+$700 fee+$5k pelvic MRI) and I waited two months for an appointment. But the ability to go is a privilege, and I’m committed to UXR so…
I get to fancy clinic and sat across from a gyn surgeon who 1. Had not read my file and 2. Was wearing a Bow tie. Suffice it to say, I was disappointed that this is the best of healthcare. I wanted to excoriate him as he pulled up the MRI he forgot he ordered for my pelvis, and then…
A picture is worth a thousand words, but the words bow tie doctor fancy clinic chose to say out loud were, “weird…uh..Did you know you have a tumor on your spine?”
If I knew I had a tumor on my spine, I would’ve led with that, but this is why fancy clinic is good. By complete accident they found something that no one else looked for.
Side note: That white guy in the pic is now named M.a.t.t.= My annoying tiny tumor.
M.a.t.t. is so named for 2 reasons
1. every grown woman has met a Matt at some point in her life who is categorically the fucking worst.
2. He’s a white blob who photobombs a pic, dominates the convo and subsequently refuses to leave.
Step 4: I never would have found the tumor on my spine if I didn’t get a second opinion at a fancy clinic that’s not affordable, difficult to access, and out of reach for the average American.
After M.a.t.t. discovery, one inevitably becomes enmeshed in a topic I would’ve preferred avoiding for another 50 years: confronting mortality, regret, and even the luck of finding this thing early.
People usually want to know what it’s like to hear the news. I think a part of them imagines themselves in that chair with Dr. Bow tie.
For me, I think I said “alright fine”, shook hands with doctor bow tie and proceeded to read about cell bio. But +3 hrs I was sitting in an airport and a toddler cheerily ran by with her mom. This was the moment I realized I probably wouldn’t have that. That moment was brutal.
While I was on the plane, the following two thoughts sat very heavy with me:
1. It is extremely rare to catch my condition in early stages. The weight of luck and privilege that comes w/ visiting <Fancy Clinic> makes you think of the 80% of Americans who will never be able to do that.
2. The only life regret I could actively identify was how cavalier I’d been in not taking care of myself when I had the resources to do so. It was reckless and stupid.
I mention this piece about fancy clinic because 1. I think early detection through better providers has the ability to change the dynamics around fancy clinic accessibility and 2. To demonstrate the state our healthcare system is in. My life and death came down to privilege, access and money.
Step 5: After the diagnosis, waiting is expensive and it sucks.
In the midst of all that heaviness: waiting sucks. After the initial finding, it took me over a month to get the right diagnosis and surgeon. And that’s on the fast side!! A month of scans and pokes and tests. And more opinions, and 3 more doctors. I have an extremely rare tumor and was lucky to finally find folks at home, at Memorial Sloan, to take me on and diagnose me correctly. They are an incredible hospital with the best humans you can imagine.
If you know someone going through all of that waiting right now, go give them a hug. People underestimate how hard this part is. It’s mentally exhausting and financially draining.
Side note: If you’re an entrepreneur, I’d encourage you to look at this period of time for patients. Within diagnostic month(s), there’s so much opportunity for businesses/ startups to help avoid a costly odyssey through a broken system and just improve general patient experience. There are navigators like Grand Rounds and Accolade who are trying this model but I don’t think we’ve found a silver bullet.
Side note lesson for the waitees reading this: I’d advise you never to Google anything related to your diagnostic differentials unless you want to see multiple standard deviations of how one can creatively die. Ask your doctor or the person navigating you through the experience, not the internet.
What happens after the waiting?
And finally, we get to today: I found a lovely surgeon, who I *trust* who did an incredible job of taking out the tumor. I’m still learning to do basic things like sit up and walk, but I have a new shot at life because of the care I received. Further treatment means I’m on a long road, but a good one.
Like I said at the beginning: In an ideal world, I would have gone to my primary care doctor, had an MRI, found the tumor, gone to Sloan and had it all taken care of 2 years ago. But I didn’t. I won the lottery in catching things early because *I navigated myself*when I didn’t have anyone to trust. I hope that lack of navigation through these events becomes an antiquated process.
If you’ve made it this far and wondering if there’s anything you can do, I’ve got you covered:
1. First, it should be illegal that I have to say this but, *if you have the resources* Go find a primary care doc/gyn. if you don’t, I’d be happy to help you find some in my downtime, so DM me.
2. go text/ call one person in your life that you haven’t seen in a while and care about.
3. Find candidates who represent your healthcare values AND support them so that a privileged trip to fancy clinic doesn’t mean life/death.
4. DM me recs for your preferred source of entertainment as I have 6 weeks of bed rest and further treatment
The final thing people ask is what it’s like to be going through this and I think they expect me to say it sucks. The reality isn’t that binary. There’s parts that suck, and parts that are so overwhelmingly beautiful it’s hard to articulate.
Among the most beautiful is to be taken care of by people you love. I’m blessed with many of them and can’t tell you how much a support system has meant to me.
Wishing you lots of joy and healthy days, Jacq (and M.a.t.t., RIP)
/fin
