The Limitations of Modern Medicine
Over the last five days, I’ve been absolutely consumed with trying to find an alternative to Ana having open surgery…again. In a word, I’ve been desperate. Now I’m just exhausted.
It started with a question that Jim had about a procedure called radiofrequency ablation (RFA) which is a type of CT-guided probe that is inserted into the tumor. Then radiowaves are sent through the probe and heat the tumor up, effectively nuking it while preserving the healthy tissue around it. Almost sounds too good to be true, right?
Well…yeah…that’s the thing. We urged Dr. Middlesworth to find out about RFA and he reached out to the interventional radiologists at Columbia. They responded with the same recommendation as Dr. Yamashiro and Dr. Middlesworth – surgery is the best treatment for Ana’s tumors. RFA is not a good choice because she has so many tumors.
But that wasn’t good enough for me. I wanted to know why? Why can’t they just try RFA first and if it doesn’t work then fine – open surgery it is.
So, me being me, I spent a bunch of hours online searching for interventional radiologists with experience treating lung tumors with RFA. I found an expert at Massachussetts General and emailed her to see if they ever used RFA to treat the type of tumor presentation that Ana has. She responded no – we don’t recommend RFA unless the tumors have recurred after surgery. Also, we don’t recommend it for as many tumors as Ana has. The primary recommendation? Open surgery.
Me: Well, okay, but why? Why not? Have you ever tried?
Nice radiologist: Tumor recurrence is less likely with open surgery.
My response: But can’t you use RFA again if the tumor recurs?
Her response: Send me Ana’s latest scans and I’ll take a look…
At this point, I emailed Dr. Middlesworth and told him I reached out to an outside facility. I sent a long email with all of my questions – why is surgery better when something less invasive exists? Have they ever tried treating Ana’s type of cancer with RFA rather than immediately digging around in the lungs? Has HE ever had experience with Ana’s type of cancer (IMT) spreading? I mean, it’s slow growing, maybe something less invasive will work for her.
He called me at 9 p.m. that night and stayed on the phone with Jim and I for an hour, impressing on us the gravity of Ana’s condition. She has metastatic lung tumors. They’re growing. She’s losing lung tissue. This presentation of IMT is acting in a way no one ever expected, for that reason he feels the best course of action is to get the tumors out of her lungs as soon as possible. Also, he will feel her lungs for additional tumors. In his experience, there are almost always additional tumors that haven’t been revealed on the scans. This procedure (thoracotomy) gives Ana the best chance of recovering and living her life. I hung up the phone pretty much convinced it was time to schedule the surgery. Or, at least, I thought I was convinced, but I still had that nagging doubt (can’t they even try?)
That call was last night. This morning I woke up obsessed about another procedure I’d heard about from a friend – it was called stereotactic radiation. It’s radiation therapy, but it’s so targeted that it can hone in on tumors while preserving healthy tissue more than traditional radiation therapy can. It’s done with computer arms and radiological imaging and, I don’t know, fairy dust. So I was convinced, CONVINCED, that this was the answer for Ana. I had the blog post already written in my head. I’VE SPARED HER! I’VE SAVED HER! LOOK WHAT A LITTLE RESEARCH CAN DO!
It seems too good to be true, right? Yeah yeah…Anyway…
I emailed Dr. Middlesworth and asked him to look into this procedure with his interventional radiologists (the same guys who said RFA was not a good option) Meanwhile, more Google searching lead me to a pediatric interventional radiologist at Sloan Kettering who knows lots and lots and lots about this procedure – and does it all the time. My feeling was that while the guys at Columbia may be experts, the people at Sloan ONLY deal with cancer. They’re bound to have more experience…
I called Sloan and, through tears, explained that I was trying to figure out if this was a viable option for my daughter and that I couldn’t seem to figure out why people keep recommending surgery when there are other options. I keep reading about them – all these miraculously less invasive options so why can’t they treat these tiny little tumors less invasively?
I swear I would’ve called sixteen hospitals – Boston Children’s, CHOP, The Mayo Clinic, St. Jude’s, etc. etc. I stopped eating. Jim had to drag me out to lunch yesterday and I crawled into bed and refused to eat dinner. I would’ve kept going – calling experts, tracking them down via email, trying to see why there wasn’t a better option. Why won’t they just TRY?
Luckily the radiologist from Sloan called me back. She patiently explained why stereotactic radiation was not a good option for a 13-year-old girl with multiple lung tumors. It would send multiple beams of radiation through her chest – crisscrossing through her breasts, heart and lungs to pinpoint all those tumors and deliver significant radiation to her heart. It would put her at risk for breast cancer, and other complications, and was not as safe as surgery.
But…(I spluttered) but…it’s surgery and I’ve read it’s really painful, and I don’t want her to have to go through it. She had a liver transplant! (this was me, talking to some strange doctor at Sloan…and crying).
And she was so patient. She said that they would control Ana’s pain and that this was a safe procedure and that Ana would go on to live a healthy life. She said the tumors were benign (I corrected her on this – most cases of IMT are benign, but Ana’s is not behaving like most cases). Even so, surgery is safest. And I finally got it – she has to have the surgery.
She has to have the surgery.
So I called Dr. Middlesworth’s office and scheduled Ana’s thoracotomies. She’ll have the first one on June 23rd (two days after we get back from our Make A Wish trip to the Bahamas) and the second one on July 29th. And I learned that there isn’t a magic bullet. There’s no golden ticket that will cure her lungs. There is a limit to what modern medicine can do, and we’ve found it.
This is cancer and it’s not benign. We know what it did to her liver. We can’t let it do that to her lungs.
I have accepted this. I have. but I wanted to share with you how very hard it’s been to come to this point. Thank goodness for patient doctors who answer emails from crazy parents.