So the last time I wrote a blog, it was a simple little list of things that I would have done differently through my own battle with cancer. Leave it to the kids at Stupid Cancer to take that list and turn it on its ear. Next thing you know, literally hundreds and hundreds of people talked about what they would have done differently with their own experience, and one thing kept popping up over and over: "I would not have listened to my oncologist."
I have to say that I was really blindsided by this. To be honest, I had a really, really good oncologist. Once my diagnosis came in as the simple seminoma version of testicular cancer, he immediately formulated a plan to treat me. My cancer was pretty widespread, so surgery was out of the question. And he wanted to avoid radiation if at all possible, so my treatment was to be a cocktail of three chemotherapy drugs. I would have all three at the same time, which would take approximately four hours. I would have this for five straight days, then take two weeks off to recover, and then repeat it three more times.
That's 20 rounds in 11 weeks... and I didn't even question it. It didn't even occur to me to question it. This was my oncologist. He knew best.
Medicine is a rapidly evolving blob that seems to have no real barriers or rules. Who knew that a medical trial for glaucoma would result in a massive dent in the impotence market? And literally last month during a trial for a new arthritis medication, a completely hairless man's completely hairless dome didn't just sprout buds; it came back with a vengeance.
So the way things have always been done may not be the way things should always be done. My dad just happened to be affiliated with Sloan-Kettering in New York. One day before I started my chemotherapy regimen, he asked my cancer doc if he'd be willing to share the diagnosis with the docs in New York. As it happened, my doc did his residency at S-K, so he said he'd be happy to consult.
Then an interesting thing happened during the consultation: one of my prescribed drugs was no longer necessary in the treatment of simple seminoma. Could things actually be a little easier than they were going to be?
I would probably not have asked for that second opinion. Many of us don't ask for a second opinion, and I think that's wrong.
I remember a friend of mine was diagnosed with testicular cancer a few years ago. As it turned out, he was related to the oncologist who found the cancer and prescribed the treatment. Unfortunately, the doctor didn't specialize in testicular cancer, and the original prescribed treatment was not enough to kill it. Months later, this same friend saw his cancer come back hard. He finally found the right doc, and ended up having to do high-dose chemotherapy just to kill something that should have been destroyed during the first go-round.
I've heard his horror stories of high-dose chemo. I'd rather have Lionel Messi fire a penalty kick off my remaining testicle than have to face that.
And it takes me back to many of the comments on the Stupid Cancer Facebook page:
"I would have chosen a different oncologist."
"I would have tried to opt out of my last radiation as my skin was literally falling off."
"I would have..."
There were hundreds of comments, many having to do with this. With this in mind, I am here to tell you, definitively, what you owe your oncologist: nothing.
Doctors should be respected for the sheer will of not only wanting to help to cure diseases, but also the staggering amount of time and debt that many of them take on to get to where they are. However, they are there at the pleasure of us, the patients. This is not to say that oncologists are nefarious in any manner. I'd bet that all but a handful are truly remarkable healers.
Please don't think I'm saying that you should go into that first consultation with a lack of trust. Without the expertise and skill (and yes, even bedside manner) of my doc, I would not be alive today. But in a rapidly advancing field of disease and medicine like the cancer world, a second or third expert opinion can be one of the most important medical decisions you make.
And in fact, take cancer out of it. I remember once I had a pilonidal cyst, and to be honest, there's almost nothing more embarrassing. (If you're eating, I suggest you stop now.) It starts as an ingrown hair at the top of your butt crack, and then continues to grow inside until it wraps around your spine.
The first doc I went to said, "We'll cut it out and then leave the wound completely open to dry."
As I went screaming out of his office, and for the first time ever, I mouthed the words "I want a second opinion." Thankfully, that second opinion told me that it was completely unnecessary to leave the wound open. I have what I like to call my "second butt crack" now, and I'm thankful for it.
Look, medicine is not a popularity contest, and no one wins the "Complicit Patient Award." You have every right to ask any questions you might have. And I would ABSOLUTELY recommend at least one, and maybe two advocates to be with you when it comes to weighing treatment options, as many of us are too gobsmacked with the diagnosis to think of a coherent question.
And go for the best of the best in your area. If you have breast cancer, make someone who specializes in breast cancer treat you. Colorectal? Talk to someone who's great with asses. Google is your friend. TopDocs is your friend. Do your research. Hell, ask your oncologist who they would choose to treat them if they had cancer.
My point is that you have more power than you think, and the paternal Marcus Welby "I'm the doctor and I know best" doesn't fly anymore. With all there is at stake, not only your life now but the ramifications of your treatment on your future health, remember this: what you feel matters, and if something feels wrong to you, take a breath, take a day, and take back your choices.
I thank God for the oncologist I had. He not only consulted with the team at Sloan, but then agreed with their assessment. It was a radically new approach to treating my disease, and as I learned later, I was one of the original guinea pigs in the country to test out the new two-drug approach.
All I can say is that the side effects from two drugs sucked hard enough. I don't want to imagine three.