Melissa discusses with Michelle King Robson whether or not she received enough information about lung cancer from doctors to make informed decisions about her health.
Michelle King Robson: What type of information did you get from them? Did you feel that it was enough for you to make a sound decision as patient?
Melissa: You know, ironically, the doctors didn’t give me a lot of information and I would have to actually ask them very pointed questions in order to get an answer, such as, you know, what is the average lifespan of somebody that has lung cancer? You know, what other symptoms should I expect to see, those sorts of things.
And they really weren’t forthcoming with a lot of information so I found that I had to go out and get it on my own and really, I just did that by sifting through the information on the Internet and just trying to go to credible Web sites and looking at their information.
A lot of times, there’s actually a Web site, cancercompass.com. It has a message board, phenomenal, and you can read information that’s specific to lung cancer. It’s almost like a little support group on there and not just from the emotional aspect and support aspect but you learn a lot about how a drug may affect another person or, you know, maybe somebody read something about a new clinical trial that is coming down the road. There’s a lot of information in there that you can learn from as well. So message boards were huge, blogs, and then going to credible websites.
Michelle King Robson: So then how, I guess, when you go on the web and you know so much then you could just be completely barraged with information and it’s trying to figure out what information is good and what information isn’t good which is the challenge.
Melissa: It is a challenge and really I just try and look at the source and make sure that number one, that whatever information is given is that it’s up to date, because there’s a lot of older information out there and with cancer it’s such a huge topic, it’s such a hot topic right now that things literally are changing by the day.
I know one of the chemotherapy drugs that I was on, it was just approved through the FDA as of August of last year and that’s how fast something moves. So you want to make sure that whatever statistics or whatever information that you are reading is up to date. So look at the source, look at the dates and…
Michelle King Robson: And look at the posts.
Michelle King Robson: And look at the people who are sharing the information, that’s what I find so fascinating. When I want to know about a particular drug I, go look at other people talking about that drug because I learn more about the side effects of the drugs and the interaction of a drug and if the drug is newer or older than you ever would just by looking at what the pharmacist gives you.
Melissa: Absolutely, yep, absolutely. And it helps just talking to people that are going through your situation. Because the pharmacist or the doctor, they don’t have cancer, they don’t know what you’re feeling and what you are going through. So it is a lot easier when you are talking with somebody on the message board that has what you have and feels what you feel and can say, “Hey, I am on Tarceva as well. I am not feeling these side effects but I am feeling this.”
Michelle King Robson: Exactly, and it’s validation for you and I’d say it’s a wonderful resource because I know in my own case when I was sick I didn’t have a place to go and that’s one of the reasons why I started, that is the reason why I started EmpowHer, for that very reason. I couldn’t get that validation and I am so glad that you were able to find it.
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