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Breast Cancer Specialists Make a Difference In Care

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Published on June 23, 2020

Are you worried you're going to hurt your oncologist's feelings if you switch to a specialist? Metastatic breast cancer patient Pam Kohl says you shouldn’t be.
 
In this video, Pam explains why she stayed with her original oncologist longer than she should have, what caused her to switch to a breast cancer specialist and why she’s glad she did. Watch to learn more.

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Transcript | Breast Cancer Specialists Make a Difference In Care

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.

Pam Kohl:

Hi. I'm Pam Kohl and I have been living with metastatic breast cancer for almost three and a half years. I was diagnosed after being diagnosed initially with stage I breast cancer; estrogen positive, no lymph node involvement so a small tumor and an Oncotype of six. I did radiation. I did lumpectomy. I did five years of endocrine therapy. And at the end of my endocrine therapy, I was told that I was cancer-free and that I could look at my breast cancer in my rearview mirror. And I went and celebrated and three-and-a-half years later on an annual mammogram, which I did every year, something was suspicious. And well, they kept saying, "Oh, it's nothing, it's nothing. You have such a low risk of recurrence. There's no way." And of course, after ultrasound and biopsy, it was a recurrence of my stage I breast cancer.

So after my mastectomy, from that recurrence, there was some question about the pathology and there was just some trying to decide whether I needed to have radiation again. And there was a decision to go to the tumor board. And, at that point, I said, "Well, if we're going to tumor board, let's get all the information we can, and let's get a PET scan." There was still resistance to getting the PET scan, but I was strong and worked hard and got them to do the PET scan. And unfortunately, the PET scan showed two areas that lit up that needed to be biopsied. And I was diagnosed with stage IV metastatic breast cancer.

And even after that experience, when I had to push and push and advocate to get the PET scan, I still stayed with that doctor because he is such a nice guy. And, you know, he was treating me. He treated my first breast cancer and it just felt right. But the longer I stayed with him I began to realize that he was not as aggressive in treating metastatic breast cancer as I wanted to be. And here I was in North Carolina with Duke and UNC, two world-renowned cancer centers, and I just woke up one morning when I was frustrated with the answers that I was getting and the approach that we were taking. I just woke up one morning and said, "You know what, this is not for me."

And as much as I do not want to hurt his feelings because I like him and I stayed longer than I probably wanted to, now is the time that I needed to go to a cancer center where I knew they had the most current thoughts about how to treat metastatic breast cancer and that would really work with me as a partner. So for me, it was critically important that I find a doctor that heard how I wanted to approach this and was willing to work with me on ideas. And I also wanted to be part of the data and the research. And I wanted to be able to hear from my doctor, who's a clinician, who also does breast cancer research, I wanted us to work together.

Even if I couldn't get into a particular clinical trial, I knew that he knew what the protocols were for that trial and that maybe we would try the same thing. So it's so, so important to trust your gut. If it's not feeling right, if you're not getting call backs from your doctor, if your doctor is dismissing your symptoms or your signs, think about changing the doctor. It does not matter whether you hurt somebody's feelings because you're not going to hurt your feelings. Your health is much more important.

And I would say even if you don't want to change your doctor, when you are first diagnosed with metastatic breast cancer, if you can, in any way, get to a cancer center where they are doing research for a second opinion. It is so important. And remember, they may know something that your local doctor just doesn't know. It's not that they're evil. It's not that they're incompetent. It's just that they're not involved in the same way that researchers are. And trust your gut and move forward and do not dismiss yourself. Be vigilant, be vigilant, be vigilant, and get the kind of care that you personally want and need.

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.

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