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How Being Proactive Saved My Life

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Published on March 28, 2014

After being told to "wait and see what happens" in the early stages of a blood disease, Barbara Miller sought a second opinion. Soon after, she was diagnosed with essential thrombocythemia (ET) and later treated at MD Anderson Cancer Centera decision she feels made all the difference to save her life. Hear how Barbara is doing today and her hopes for the future. In Barbara's own words "I really don't worry about it [ET]. As long as I feel well and I'm staying active, I don't worry about it at all."

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Transcript | How Being Proactive Saved My Life

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of MD Anderson Cancer Center, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Barbara Miller:
About, I guess, nine or 10 years ago, I went for my annual physical. My primary care physician called and noticed that the platelet count had risen quite a bit. She wanted me to have a repeat blood test, which I did. It was high also, so she sent me to an oncologist or hematologist. I went to him, and he said that he thought it was just low iron. And he put me on a slow iron tablet, and thinking that would do the trick, and it didn’t. And I kept going about every two or three weeks for checkups, still taking medicine.

After probably six months, this was still going on, and nothing had happened. So I asked him, I said, you know, “What do you think is going on here since nothing is happening?” And he said, well he thought I was in the early stages of blood disease. And I said, “Well, don’t you think we should do some tests or something to see if maybe you can find out what it is?” He said “No, I think we’ll just wait and see what happens.” I did not want to wait. I talked to my primary care doctor, and she said, “If you want a second opinion, I certainly can get one.”

My husband and I talked about it, and we decided that maybe there were some clinical trials going on. We called MD Anderson and I was able to get a nurse. She was very interested. She was very concerned by the fact that I had not even had a bone marrow exam. And probably within maybe a week and a half, I had an appointment. And I saw Dr. Talpaz to begin with. He did several, a lot of, tests the first day. After about two or three bone marrows, he was able to determine that I did have ET. He put me on medication, and I have done fine ever since then.

My medicine was changed about three months ago because platelets were going up a little bit, but now I think it’s under control again. So I was very fortunate that I came to MD Anderson, and I wouldn't go anyplace else. I’m very lucky that I live here, so it doesn’t take very far to get—long to get here. But the doctors have been great. I feel very confident here, and I’m just glad that I got that second opinion.

Lessons for other patients to get answers?

Well, to me, I don’t think you should sit around and wait to see what’s going to happen. I think that if you can be a little proactive, it is going to help tremendously—at least give you some peace of mind of what’s going on. And to me, the second opinion was exactly what I should have done. I didn’t know anyone that had this sort of thing, and so going to him just gave me a lot of confidence in that I knew everything was going to be taken care of.

Your abilities and health?

I feel fine. And there is nothing, there are no restrictions on anything that I do. I have not had to cut out any of my activities. I enjoy biking. I enjoy walking. I’m very active, and I haven’t had to change my lifestyle whatsoever. And as far as worrying about it, I don’t because I know my doctors are taking good care of me. And as long as I feel fine, I have no complaints whatsoever. I just feel very fortunate. 

Has questioning your doctor changed?

Oh, yes.

I think they changed tremendously. I think the doctors, well, as I have a PA to talk to, if I have questions and I feel like they’re not really, really, really important to bother the doctor with, I can check with them. I can talk to the social workers. Everyone has been just extremely helpful in making sure that I know that I can go someplace else and talk to them and get some advice. So I think that the care is great.

What advice for asking questions?

I think the main thing is, as you said, put yourself first and talk to your primary care if you’re not getting help anyplace else. And if the doctor doesn’t have any suggestions, I would try going someplace else. And I would just start checking, until I could find a place that I could get the answers that I needed. And I would go to a hospital if I wasn’t in Houston, MD Anderson. I would go to a specialist, someplace that I felt like could at least tell me where to go.

How do you feel about the future?

I feel good about the future. I don’t worry about it. I guess I think nothing has really, well I did, I did have to change the medicine, and I assume that it’s working. I know it is because the platelet count has been lowered. I do know that Dr. Verstovsek is checking it. And if it goes up again, he’ll give me some more medication so that it can be under control. So I really don’t worry about it. As long as I feel well and I’m staying active, I don’t worry about it at all.

Please remember the opinions expressed on Patient Power are not necessarily the views of MD Anderson Cancer Center, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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