Well, if you've read my last post you know that I'm already a bit of an expert about pains in the butt.
The following is an attempt to articulate just why the process of obtaining a second opinion beats out a(n extra-large sized) needle biopsy as the world's biggest pain in the butt ever.
When I first shared my diagnosis with people, the most common response I got back (after the expected five seconds of shocked silence and "I can't believe this is happening to you"s) was the suggestion that I should seek a second opinion.
A second? A second opinion? It took six months, seven doctors visits, five needle sticks (four regular size, one extra large,) a surgery and two biopsies to get this one!
I pretty much spent the entire month of August in doctor's offices. The last thing I wanted to do was voluntarily go to another one.
I tried to explain to all these people that Hodgkin's is very rarely misdiagnosed from a lymph node biopsy. There's these special cells called Epstein-Barr cells (they're named after the scientists that discovered them.) that can be easily identified in a microscope. They took my lymph node out, sliced it up, and looked at it under magnification. It was riddled with loads of Epstein-Barrs.
I told them about how the chemotherapy regimen of ABVD is standard across every treatment facility in the entire United States.
I told them that less than one percent of the time is a diagnosis of Hodgkin's Lymphoma changed to something else.
Then a friend asked me how many people a year get diagnosed with Hodgkin's in the US. I told her about 9000. "Oh, really. Nine thousand out of three hundred million," she said. "That's less than one percent isn't it?"
I got a second opinion.
There were three things that made this process so painful.
The first was the data collection. I decided if I was going to get a second opinion, I might as well get a Damn Good Second Opinion. So, I contacted a large, very famous, you'd recognize the name if I told it to you cancer hospital within a (long) morning's commute from my house. Before your appointment, you have to send them a copy of all your blood work, every imaging CD, the results of every scan, test and assessment that was done to make up your first opinion. In fact, some of this has to be sent before your first appointment.
The second was insurance approval. I knew the Damn Good Second Opinion place took my insurance. I looked it up online and called my insurance company before I even called for the appointment. However, because of the name of my insurance company or whatever the scheduling receptionist thought that implied, she didn't believe me and kept transferring me to the Damn Good Second Opinion insurance department, which in terms of managing call volume and hold wait times turned out to be a Mediocre At Best Second Opinion Insurance Department. So I kept hanging up on them because I was sick of waiting and I already knew I was in their network. Unfortunately, this backfired as I just could not make the appointment until I talked with their insurance department.
The third thing, and I have to admit this was my biggest hangup personally, is worrying what your current doctor thinks about you getting a second opinion. I mean, what you're basically saying is, "I'm totally relying on you to save my life, but I'm going to risk totally pissing you off by not trusting you and going to ask a more famous doctor." Essentially you're totally banking on your doctor not being a revenge seeking narcissistic sociopath. (It's possible that in addition to cancer I may also have some minor trust issues.) I do understand that the chances of this are very, very small. However, I've just been diagnosed with a disease only .003% of the population gets, so I'm not exactly trusting my luck at the moment. You'll forgive a small amount of paranoia.
Here's the good news: All of this was worth it.
When I went to the Damn Good Second Opinion place, they did not have to stick any more needles in me or do anything more than take my blood pressure and talk. The doctor and his research assistant were both kind, brilliant and actually very funny people. They told me there was no need to have my treatments done there, as they would be doing the exact same regimen as my first doctor prescribed. They even told me once I get my two month PET/CT scan done to send it down to them and they would double check it for me. I walked away feeling so much better about the entire experience and my illness itself, filled with hope and drained of much of my fear.
Here's some things I learned from this process:
1) You are entitled to receive a copy of all your medical records at any time. Your spouse is not, unless you fill out a form, or catch the flaky new girl on her morning alone at the desk.
2) If you take advantage of this right, you may find out the results of your first PET/CT scan before you hear it from the doctor. Utilize this power with caution. It's probably not a good idea to perform your own cancer staging workup in the car on the way to work after attempting to read the report on your own in the imaging center parking lot. You'll spend the rest of your day alternating between waiting for your doctor to call and googling terms like pleural effusion,
3) Hospitals keep the body parts they take out of you from biopsies, but they may not keep them in the same building, city or even county. Once I made my appointment, I learned my Damn Good Second Opinion doctor needed to see the actual slides of my bone and lymph node biopsies. Obtaining these involved several phone calls to my doctor's office and a trip to the hospital where I had my lymph node surgery. Then the Damn Good Second Opinion place called and moved my appointment up a week. This meant I needed to get those slides down there within the next two days, My husband and I spent an entire morning wandering through the bowels of a hospital looking for the right department to make this happen. I ended up on my cell phone with the woman who ran the department, who had to unlock a door to let me in. It was at this point I learned that she didn't have my actual lymph node on her. (This was a bit disappointing, as I was secretly hoping to take a peek at it myself.) I filled out a form in her break room and handed her my credit card so she could fax it to the medical facility that had it. The credit card was to pay the $43 fee to overnight mail a chunk of my lymph node to my Second Opinion doctor,
4) Sometimes you just gotta sit on hold. Eventually someone will get on the line and talk to you. Call from a speaker phone so you can multitask while you're waiting.
5) Your first opinion doctor will not care if you get a second opinion, in fact he will almost always expect it. There's no need to whisper to the receptionist and nervously hope he doesn't walk by when you ask for a copy of your written biopsy report. He will most likely not notice, most definitely not take it personally and under no circumstances will he think you are "cheating on him."
6) You should absolutely get a second opinion.
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