“Whatever you do, don’t start searching on Google – just talk to your provider.”
Every medical provider I speak with says this, and I know why, but I hate it. It’s super-condescending.
I get that a lot of patients start reading about “alternative healing” methods and other nonsense for serious diseases and get all kinds of bad ideas unsupported by evidence. I am not one of those patients. Google is also a place where scholars and researchers can go to collect reasonable information about the latest in their fields. Please have a talk with me before assuming I am the former rather than the latter.
When I had a question about the impact of radiation therapy on long-term outcomes for chondrosarcoma, I also had a provider say “it’s too early to even start talking about that yet – let’s just focus on things we know for now”. Again, I get it. No need to borrow trouble. We don’t even know if it’s chondrosarcoma yet or whether radiation would be necessary, so why even look at long-term outcomes for chondrosarcoma treatments?
1. Because I’d like to have as much information as possible about the most likely possibility up front, since I don’t have a good feel for how much research I’ll be able to do after the first operation.
2. Because if it is chondrosarcoma after all, the surgery choices we make now will, to some extent, depend on the medical team’s philosophy about chondrosarcoma radiation treatment (thorough vs. limited surgical resection, for instance). I’d like to know the implications of that philosophy so I can make informed decisions.
3. Because I’m a planner. I realize we don’t know what will happen, but feel more comfortable if I can build out some understandable contingencies based on what little we know today. It’s how my brain (more or less) works.
So, yes, I’ll use Google to read as many relevant and legitimate scholarly journal articles as I can find about skull base tumors, chondrosarcoma, and related things. I’ll also want as much information as I can collect about the different likely treatment scenarios and outcomes so I can read all the related research and form opinions about the various options.
I like to know what’s happening, and I like research, so that’s that.
6 thoughts on “Google”
You are not the average health care consumer. Many people who don’t think the way you do feel lost and so leave their care in the hands of professionals without knowing how to find out more. We are researchers at heart. It’s one of our favorite things. Finding out as much as you have, and seeking a second opinion, are the only logical choices for you in this situation. No doctor worth his salt will feel slighted because you sought a second opinion on something so serious. And, any doctor worth his salt will welcome intelligent, thoughtful questions, and answer them to the best of his ability. Discussing a case with someone who knows what they’re asking would seem to be a welcome thing. You can truly be a partner in your care and you have a higher likelihood of compliance with aftercare and positive outcome than someone who is scared and lost and discouraged because they don’t know what’s happening to them. I love you and I’m so very proud of you and the way you are handling this. I couldn’t ask for a better sister.
I love you, too, Liz. Thanks for the vote of confidence!
I agree whole heartedly. Google. Question. Review. Micromanage. Be a pain in the ass. Insist. It’s your quality of life as you see fit. Don’t let the protocol push you around. Break the rules and make more relevant changes. Get your best surgeon and let any “hurt” feelings fall as they may. It might feel uncomfortable but you are right on target Maria. Medical treatment has changed significantly over the years. No longer can you just hand yourself over to the doctors and let them do their thing. Everyone needs a health advocate these days to question, coordinate and followup.
I have a little story to tell to make my point.
My mother had a rare kidney cancer 10 yrs. ago which of course I googled thoroughly. Even without a medical degree I was able to surmise that my mother was not going to make it, contrary to what her doctor was telling us. I confronted the doctor with my research and only then did he admitted we had just few months left. I had to inform my family who were initially angry with me (“Since when are you a Doctor Susan?”) for finding the information and later insist that the doctor admit the prognosis with them directly. At my father’s insistence, even my mother was not informed until a few weeks before she passed. We lost precious time to plan and quality of life while we were stuck in a whirling vortex of experimental procedures per protocol that had no chance of changing the prognosis. XOXO S
I was so sorry to hear that your Mom and your family had to go through that, Susan. Good for you for pursuing that research, and thank you so much for your feedback – it helped me feel far more comfortable deciding to switch over to Dr. Ferreira, who ended up doing an amazing job with the surgery. I will definitely continue to remember your experience as this whole thing progresses. Like you, my primary interest is in knowing the truth and being able to plan effectively.
Okay, I get it. However, do you realize that every brain tumor is different? My doctor told me not to Google because much of the information may not reflect the nature of my brain tumor! For example, most websites and studies state that patients with my particular tumor have a 4-7 year life expectancy. My tumor hasn’t grown in 4 years and certainly has not become more malignant. This last fact was proven by a biopsy from 2 months ago! According to Google, I should be dead, but I’m not!! The best thing to do is find a great team of doctors. I live in the NYC burbs, so it’s easy. By the way, there is a lot of bad medical research on the web conducted by a lot of bad doctors, and plenty of the latter are ubiquitous!
Yes, I do realize that every brain tumor is different, and congratulate you on your exceptionally positive outcome. Stephen Jay Gould’s essay “The Median Isn’t The Message” (recommended by my initial neuro-oncologist) is a very nice explanation of how statistical reasoning may or may not play out in medical situations. I enjoy statistics and understand their implications well enough to know that playing the numbers in no way guarantees success.
On the other hand, avoiding the research and numbers it contains entirely would leave me with no way to evaluate whether a physician I’m trusting with my life is following current evidence-based protocol in her treatment plan or making some renegade decisions based on more radical ideas… I might agree with the standard or the radical approach, but unless I’ve read and evaluated every bit of the research I can get my hands on in as much detail as possible, it’s difficult to even know which questions to ask to determine how I might feel about the available options based on my particular situation.
Some research articles are absolutely better than others, just as some scholars are better. Being a research geek, I’m comfortable enough with research design to be able to identify the quality of research in some cases, and make it a point to speak with a cross-section of experts in the field to get an overview of research quality and relevant neurosurgery practice turf battle details in cases where I’m uncertain.
Ultimately, neither my neurosurgeon, the research community, nor I can provide 100% answers about how a cancer is going to turn out. All anyone can do is pull together all the evidence-based information about the current situation’s variables (to the extent possible, which is limited when it comes to chondrosarcoma) and use that to play the odds and hope for the best possible outcome.
Because of who I am as a human being, I’ll always insist on being part of that process, and bringing my questions to the table. If I haven’t already discovered it on my own, I’ll always ask my neurosurgery team members to share with me the relevant data (or experience, in the absence of data) that backs up their claims, plans, and assumptions. I’ll always do my homework, and learn every last thing I can about any major decision that is going to impact my life to this extent, because I’ll always want to be the one who makes any necessary bets as long as it’s possible to do so, informed by both as much research as I can get my hands on and my carefully-selected and exceptionally capable medical team.
I get why neuro-oncology physicians would find it far easier to just let their patients know what they should do, explain things in what they feel is an understandable way, and proceed with treatment. If I were in their shoes, I’d find that far preferable to answering questions by a patient freaking out about possible outcomes they found in Google that seem unlikely based on what I’m seeing in their particular case.
Nonetheless, I’m less interested in making assumptions about my outcome than I am about finding a treatment plan that is most likely to increase my odds of the outcome I’d prefer. I may live to be 100, and I may die sooner rather than later. Either way, I want to be able to look in the mirror when the time comes and say “Well, you made the best decision you could under the circumstances based on X, Y, and Z. You reviewed the evidence and did what you could – that’s all anyone can do.”
Not everyone is fortunate enough to have this option, and I get that few people would even want to pursue it the way I do. That doesn’t, however, make my approach illegitimate, or make me uninformed about how research, statistics, or cancer work in real life. Ultimately, my argument is just that unless a physician knows enough about me to understand my degree of awareness and emotional point of view about research, they have no business assuming I’m going to jump to a lot of unfounded conclusions or go into some sort of tailspin based on a Google search and a few scholarly articles that may or may not be valid. It’s condescending to assume so. Everyone is different and has different needs when it comes to how they process information and prefer to handle these sorts of decisions, just like everyone’s body is slightly different and it is inappropriate for a physician to guarantee a particular outcome just because it has a particularly high likelihood based on the data.
Your doctors didn’t want you to scare yourself unnecessarily when your particular outcome was likely to turn out better than the outcomes in many or perhaps most cases of the same type. That’s good, because your doctors were correct. My questions would be “Why are the outcomes in my case likely to be different?”, “What are the variables that impact that assumption, and to what extent does each of the variables influence the likely outcome?”, “These are the different treatment recommendations for this specific type of case, both based on roughly equivalent sample sizes and both using double-blind methodology – which is preferable and what makes it better than the other in this situation?”
I guess I’m just not the sort of person who would be comfortable with less than that level and type of involvement. I acknowledge, however, that most people would be equally uncomfortable if they felt it was required to do the research stuff in that level of detail, and have no criticism for anyone who would prefer to rely on their doctors’ expertise to guide the way. I just personally want that and a bit more.