Research: the Good, the Bad, and the Ugly

My medical oncologist’s health questionnaire asked a simple question:

Some people prefer to have full information about their treatment so they can make choices. Other people prefer not to know, and prefer their doctor to make the decisions. Which type of person are you?

I realize I’m at one extreme of the knowledge spectrum. I’ve always been filled with a million questions. I probably drove my parents crazy as a kid because I wanted to know how everything worked. I’m a knowledge nerd.

I don’t understand the other end of the spectrum though. How can you not want to know? It’s not about trust–I absolutely trust my doctors and I’m following their recommendations 100%. It’s not about control either, even though I’m a control freak. It’s about whether you’re a participant or a spectator in your own life.

keyboard-with-research-label

The first thing I did after being told I had cancer was start researching it. I started researching it on my phone on the BART ride home, and that’s where I figured out how to spell squamous cell carcinoma. Research has been great, and it has been terrible, so I’m writing this post to help anyone else who is going through (or has a loved one going through) a difficult medical situation. These are the things that I’ve learned, after spending some pretty bleak hours. Hopefully I can spare someone else that same dark journey.

Don’t Let Statistics Bring You Down

The first thing you see when you start to research a specific kind of cancer is the survival rates. It can be presented as 1-year, 3-year or 5-year survival. It’s depressing as shit, but that’s not why I’m telling you not to dwell on statistics too much.

The famous biologist Stephen Jay Gould was diagnosed with cancer in 1982 and he wrote a brilliant essay about dealing with the survival statistics: The Median Isn’t The Message. It’s well worth reading, and I can’t state it nearly as beautifully as he did, so please take a minute and check it out.

Even beyond the points he makes, the statistics are usually old. Think about it for a minute: in order to generate a statistic about who survives five years, you have to wait at least five years. Cancer treatment is changing every month (I’m not exaggerating), especially in newer or more rare forms of cancer. Mine is one of those.

You also see the statistics before you know enough about your own situation to parse them correctly. When I first started my research, I looked at statistics for squamous cell carcinoma of the oropharynx. I didn’t have the HPV part yet, and the statistics for HPV positive squamous cell carcinoma of the oropharynx are completely different.

If you have an ounce of curiosity (and what human being doesn’t), you can’t stop yourself from looking at the statistics. What you can do is make sure you’re looking at them from a position of knowledge and not from a position of fear. Better yet, ask your doctor what his experience is with patients with your specific diagnosis.

Pay Attention To Dates

I’m really not kidding when I say cancer treatments are changing every month. Patients who were treated as recently as 3-4 years ago may have had variations in their treatment that resulted in a different experience. I read lots of blog posts about terrible side effects from chemo and radiation, for example, and got seriously depressed before I learned enough to look at the posting date: 2003. That’s a pretty long time when it comes to cancer treatment.

It’s even more true when you’re dealing with family history, and that’s one reason informing family about your diagnosis can be so hard. In my family, for instance, we don’t have a lot of recent experience with cancer but the experience we do have was terrible. Both my grandfathers died of lung cancer within a month of each other (actually it may have even been a couple weeks of each other) when I was around 8. It was quick, deadly and ugly… and that’s what my family knows about cancer. Those experiences are the first thing that comes to mind when you hear that you have cancer so before you assume anyone else’s experience in the past–even the recent past–is what you will also experience, take the time to do some research.

Look For Information, Not Answers

There’s a ton of information out there, no matter how rare your type of cancer may be. It can be overwhelming. Take notes as you read, so you can keep track of interesting bits. I use Evernote, so I can access it from any computer or even my phone.

The important thing, though, is to remember that you’re looking for information, not for answers. Read something and have it prompt you to ask your doctor some questions. It may even lead you to decide the doctor you’re seeing now isn’t the right one for you. It may lead you toward a clinic that accommodates a special kind of treatment that interests you. But don’t let your research make decisions for you, no matter how persuasive that information is. Use that information to be a participant in your treatment, but please include trained doctors and scientists to drive the treatment itself.

Part of my research confirmed what I already believed: sugar and wheat lead to inflamation and all kinds of physical maladies. I always felt better when I was following a low carb diet. I don’t think it’s a coincidence that I stopped eating low carb a year ago and started having moderate amounts of sugar and flour, and larger amounts of milk… and that’s when the cancer grew despite the fact that I’ve certainly had the HPV virus in my system for many years. Anti-Cancer makes that point convincingly, and one of the first things I did was change my diet and start taking supplements.

But I’m not relying on changes in diet and lifestyle to cure my cancer. Trained doctors and science will handle that part of it. Staying healthy and keeping cancer at bay after treatment is where diet and lifestyle will really matter. So please, don’t let anything you read on the internet talk you out of important treatments.

Remember That You Are Unique

No two people are alike. No one else had your childhood or your adulthood. No one else eats the same diet, has experienced the exact same assortment of diseases and environments, or has the exact same physiology.

Suppose you’re reading the blog of a 47-year-old white female in California getting treatment for HPV positive squamous cell carcinoma (SCC). Hey, I’m also a 47-year-old white female in California who has HPV positive SCC! The natural tendency is to assume my experience will be the same as hers. Actually, when you’re diagnosed with cancer, you’re so scared and (in my case) hungry for information that you’ll read blogs from 63-year-old men in Manhattan with prostrate cancer and think what happened to them will happen to you.

There is no one in the world exactly like you. The only way you’ll know what your experience will be like is to experience it. You have no way to know what caused that other person’s experience. For example, one of the causes for failure rates of various birth control methods is the fact that people forget to use it or use it incorrectly. Did the person you’re reading about follow every recommended step in treatment? Did he/she have surgery before treatment? How does his physiology compare to yours? There are a million ways the two of you are probably different, and any one of those could cause his experience to be radically different from yours.

Here’s a great example: I read a lot of blogs from folks who were treated with radiation and Cisplatin chemotherapy, which is what I’ll be doing. I also read a lot about Cisplatin side effects. I started to get more and more anxious (which I’ll talk about in the next post). Even beyond the correct way to look at statistics, I was making an even bigger mistake. Almost all of those blogs were from people who had three large doses of Cisplatin. I’m having seven doses of Cisplatin, each 1/3 the size which both doctors told me reduce the side effects. And yet, even in the face of that knowledge, it took me time to get the Spock side of my brain to kick back in and calm me down.

Also keep in mind of of the laws of the internet: people who have problems are the most likely to talk about them. That’s true in MMO forums, it’s true on the BBB website, and it’s true here. Information is good, being prepared is good, but assuming that everything you read will happen to you is not just unwise–it’s flat out incorrect.

Know Your Own Limits

Only you can figure out how much information you can take, and how it affects you. Like I said, I’m a knowledge nerd. I want to know everything.

At least, that was the case until I realized a couple things about myself.

First, I realized that I needed a time out. I call it “taking a break from cancer.” One night I decided I would play a game on my iPad in bed instead of doing research. It felt great. Based on that, I make sure to take a break from cancer at least a couple times a day. I can’t really make myself stop thinking about it (especially since I can feel it in my throat), but I can stop making it my focus for a while.

Second, I realized that reading blogs about people’s experiences were really bumming me out. The bottom line was actually great–lots and lots of survivors out there–but it’s human nature in this situation to feel like everything you read will happen to you. No matter how much I believe that everyone is unique (and trust me, I’m so weird that I know it’s true), you can’t really control your own fear at times like this. I realized every blog I read made me dread the treatment more, which was crazy because I know objectively that their experience doesn’t dictate my experience at all.

I made the decision to make one more pass through the internet to gather notes on treatments for side effects (both prescription and common sense), but that was it. I haven’t looked at a single blog since.

I also decided not to attend any kind of group therapy. I’ll see a therapist solo, if I need to, but I don’t want to be in a group. By myself, I’m logical, mostly peaceful, optimistic and excited to start treatment. I got past most of the fear last week. I’m fine talking with friends and family about their fears because I have the knowledge, objectivity and optimism to reassure them. Hearing other patients’ fear would probably put me right back into the cage, though, and I’m never going back there again.

We All Walk A Different Path

The one common thread among all of these points is that my path is not the same as yours. If you or a loved one are faced with a similar situation, (and I hope you aren’t) you may not want to do a ton of research. You may be helped immensely by cancer support groups. You may want to keep reading blogs so you know you aren’t alone.

Only you can decide what’s right for you, and what path you want to walk.

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