The Importance of Communicating Well With Your Doctors: Francess Register-Joyner
Francess Register-Joyner, now 68, from Camden, New Jersey, was diagnosed with early-stage triple-negative breast cancer in December 2004. Her active treatment lasted 1 year. Her treatment plan involved a lumpectomy, followed by chemotherapy and radiation. But when she went in for a pre-operative appointment a few days before she was scheduled to have surgery, her treatment plan had been changed without her knowledge: The surgery was postponed, and she’d be getting a chemotherapy port placed instead. Fran had the surgery 7 months later.
LBBC writer and content coordinator Erin Rowley interviewed Fran about how that situation made her feel, and how it changed the way she approached communicating with her healthcare providers.
Erin: How did you feel about your treatment plan being changed without your knowledge?
Fran: All of my emotions sort of exploded. When you’re fighting anyway, and then you think you understand what’s happening to you, and then you find out that that’s not it – I think the worst part was I felt totally ignored, that nobody had considered telling me that the treatment plan had changed. There were three doctors involved. None of their offices contacted me directly. But they contacted the hospital [where I had been scheduled to have the surgery]. So I was upset about that, to say the least. I really feel bad for the admissions clerk who caught the first end of [my frustration]. Because she was just doing what was on the paper.
Erin: Did the doctors explain why they didn’t tell you about the change to your treatment plan? What did they say?
Fran: Each of them basically said that it was a matter of moving quickly. [They said] The tumor was growing so rapidly that it had to be addressed [and] stopped before the surgery could take place. I was told at that time if the chemotherapy didn’t stop the growth, a whole new treatment approach would have to take place.
Erin: Did any providers apologize about what happened?
Fran: All of them did. I called each one and my concern at the time was, “I’m sure you made the right decision, but why didn’t you tell me?” I wasn’t questioning their clinical decision, it’s just sharing the information that was the issue.
Erin: Did you switch providers or stop seeing a certain provider because of these communications issues?
Fran: Oh no. They were excellent providers. I was very fortunate to get them. But our communication changed after that. They were very conscientious about explaining things to me and I was more conscientious about explaining how I was feeling and what I was going through to them, and listening better. Communication is two ways. I wasn’t very communicative before that either. But I didn’t hold back after.
Erin: Did you have any communications problems with them after that?
Fran: Any communications problems at that point were fully on my side. They told me not only everything, but even more than I really wanted to know. As we moved forward, I guess because they realized I was interested in knowing, they gave me all kinds of research [and] statistics, and sometimes those statistics weren’t favorable. An example would have been with the chemo cocktail that I was receiving, they said “this is still relatively new. The research says it’s only really effective in one out of three cases.” I don’t know that I really, really, really wanted to know that. I just wanted to know that it was effective. But once you open that door you’ve got to be ready to go through it. Not all the news is good news, but it’s better to have it than not.
Erin: Since the mix-up with your surgery, have you encountered many other people who’ve had similar issues related to communicating with their breast cancer care team?
Fran: Well, after that, I joined a [breast cancer] support group, and we shared a lot of information. That group helped me through a lot because there were things that we all found that our providers were not telling us, that we could tell each other and then go back and ask our providers about. My experience helped others, but their experience helped me to be able to ask about, “well, So-and-so said this is the case and that I should look out for this.” So I could ask [my providers], “Is this going to happen to me?”
Erin: Did your providers respond positively to you asking questions based on things you’d heard from people in that support group?
Fran: Absolutely. It seems liked they were actually happy that I asked. I think, at least with the providers that I had, [they] welcomed the interchange, the open communication and dialogue, as opposed to trying to guess what’s going on with me. Not to say that it was always simple for me either to share some of the things that were going on with me.
Erin: What advice do you have about communicating with breast cancer care providers?
Fran: Buckle up, write [your questions] down on your little question list, and ask!
Fran will be a panelist at LBBC’s upcoming Breast Cancer 360 program, Lost in Translation: Effectively Communicating With Your Healthcare Provider. Attend the program in person Feb. 21 in Philadelphia, or stream it live online.