Talking openly with your doctor is one of the best ways to feel good about your breast cancer treatment decisions. But, sometimes, talking with a doctor can be overwhelming, confusing and create more questions than answers. Do you understand the information you’re getting from your doctor? Do you know what questions to ask?
Cheryl L. Jernigan, CPA, F.A.C.H.E., is a 20-year breast cancer “thriver” and cancer research advocate. She was previously CEO of the Kansas City Area Hospital Association and has over 20 years of experience in health policy, advocacy and community/national leadership on behalf of hospitals.
She is Chair of the Breast Cancer Prevention Center’s Advocate Advisory Board for The University of Kansas Medical Center and The University of Kansas Hospital, and she is the Lead Advocate
of Patient & Investigator Voices Organizing Together (PIVOT), a new University of Kansas Cancer Center initiative. Ms. Jernigan is a founding and current board member and Chair of the Strategic Mission Committee of the Greater Kansas City Komen Affiliate,
and a member of the Steering Committee of Komen’s Advocates In Science program.
An active research advocate, Ms. Jernigan is a member of many clinical trial initiatives, including the National Cancer Institute’s Central Institutional Review Board for Adult Late Phase Clinical Trials. Ms. Jernigan chairs Komen’s Advocate Research Mentor (ARM) Taskforce, and she is also one of the experts involved with Komen’s big data initiative.
From Susan G Komen. This is real pink, a podcast exploring real stories, struggles and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room. Talking openly with your doctor is one of the best ways to feel good about your breast cancer treatment decisions. But sometimes talking with the doctor can be overwhelming, confusing, and create more questions than answers. Do you understand the information you’re getting from your doctor? Do you know what questions to ask to help us learn to ask the right questions, ensure that we have the right support and help us develop a really good relationship with our doctor. Please help me welcome Cheryl Jernigan to the show. Cheryl, thank you for joining me.
Thank you Adam. It’s fun to be here.
Well, Cheryl, you’ve got quite the prolific bio, so tell us a little bit about yourself. You hit the highlights for us.
Okay, well I’m a 20-year breast cancer and I always like to say thriver because I have more than survived since my cancer diagnosis and I was triple negative.
Wow. I love it.
I was also a covert survivor with my husband who had metastatic prostate cancer and along the way also developed HPV virus, tonsil cancer. He died January about exactly two years ago this week from the prostate cancer. So I’ve been down the cancer road and been communicating and talking with doctors on my behalf and on his behalf for a long time now.
Wow. Wow. So you’ve got a lot of background that you can share with us. I appreciate that.
Well, a lot of experience. And then, Oh, I should say that I’m heavily involved in cancer research advocacy, so that means that I’ve worked with researchers as they’re thinking about their research designing it. It all started about over 20 years ago when I became an advocate reviewer for Komen on their Komen funded grants and getting involved in that process. So anybody that’s really interested in research and what’s going on, I would encourage you, if you’re not already to look into becoming an advocate in science and you can be as active or inactive as you want to be.
Oh, that’s fantastic. I love that you’re contributing to the community in that way. A,nd now you’re going to contribute in more ways than share with us just some information and thoughts and wisdom about how we can talk to our doctors. So how can someone choose a doctor if they’ve been diagnosed with breast cancer?
First of all is to take a breath because, or you’re starting a whirlwind when you first been diagnosed with breast cancer, I would ask my primary care provider who they would recommend. And usually whoever has told you what the cancer diagnosis is, they should be able and should be working with you to recommend a doctor. And ask them why they think this person is good. The other thing that a lot of people do, and I did along the way too, is to ask knowledgeable friends and family for their advice and recommendations and thoughts on how to make sure that I’m taking the best steps forward in my journey or in more recent history, my husband’s journey. And if you kind of want to have a better idea of what questions to ask, Komen.org is a phenomenal resource of information and questions you can ask in all sorts of cases. On of the things that they have, is questions for your potential provider, for your doctor. What specialty are they? Are they board certified in that specialty and what percent of their cancer or what percent of their practice is actually devoted to breast cancer? Many people are in communities throughout the United States and may not have access to a dedicated breast cancer oncologist or dedicated breast cancer surgeon.
So find out from them what their experience is and how they keep current on what’s going on with breast cancer. A lot of physicians are in rural areas anymore. It seems like are being connected with major academic medical research centers that help support them in their quest to be knowledgeable about what to do for their patients. The other thing that you run into is do you have more than you? Generally more than one physician. You have your oncologist, you have your surgeon, your radiologist, and perhaps if decide to do a reconstruction, a plastic surgeon. And the question is how do those people talk with each other?
Do they talk with each other? If you have one available from your health care system asks for a patient nurse navigator, they are an invaluable resource for you. And then, find out, most importantly, make sure that the people you’re going to use both the health system and the doctor are covered by your insurance. And for plastic surgeons or surgeons, it’s important to know how many times a year they performed the procedure they are recommending or you’re thinking about taking or having also how many times has that done in the hospital where they practice. So those are some of the things that I would say
I would not have thought of 90% of those. So I appreciate that. So komen.org is a great resource for planning for your doctor’s visit. Are there any other resources that you’d recommend to help breast cancer patients ensure that their doctor’s appointment is productive?
Well, first and foremost, it’s not just resources, but the most important thing for you to do is to be prepared. Gather your information about breast cancer and diagnosis. It’s treatment options from trusted resources. And that’s why I’m recommending Komen org because it is vetted by clinicians and researchers and advocates so that it’s easy to read. Another great resource is the national cancer Institute. I’ve found for myself and for others that if possible, asking a trusted friend or family member about what they, if they’ve experienced cancer, what they’ve had to do and what’s important to them and about bubble. Ask a trusted parameter or family member to be your buddy, to actually go with you to the appointment, to listen and help you remember what was discussed. Can be a chaotically emotional time, uh, and having someone help listen, pour you at these meetings. It’s very important.
And they can even take notes. And I’d also say, think about what your goals are for this journey. What’s most important to you and your journey through breast cancer treatment. Understanding your goals is critical to you being able to make the right decision for you. And it’s not always cut and dry. There are options in many cases. So you need to understand what your goals are to help you make the best decision you can. And I would also say write down your questions and organize them in order of your greatest concern. This can help you remember everything you want to ask and keep the discussion focused on the issues that are most important to you. Make sure that they’re being answered. Let your doctor know if their responses were helpful or not.
Right. Yeah, give feedback.
Those of us who’ve been involved in the healthcare field for a long time, use jargon all the time and sometimes we forget what is actually jargon and it’s not readily understood by other people. So do not hesitate to ask. What does that mean? Can you further explain that? Make sure that you understand what they’re trying to say and is if it’s answering the question you need to have answered before you leave that appointment. Be sure you know and understanding. Agree to the plan of action that you had to have developed. This is your life, your body, and no one knows more about you and what matters to you than you do.
I love that. I love that. So let’s talk a little bit about not, not just the questions, but when should someone start thinking about getting a second opinion?
It’s an individual decision. A second opinion, I urge people to do, if they have any kinds of second doubts, if they’re concerned, if they’re wondering if they have a more aggressive or complicated breast cancer, if they’re having to consider more options. A second opinion can, can be a resource to not only find out more information and perhaps a different option that you might want to go with, but it’s also a way to, if they don’t have a different option to confirm that what you are planning to do is what’s best for you. So be sure to seek out a second opinion. And the other thing I want to tell when you don’t feel comfortable, when you need more information, and then I encourage people to try to do this if at all possible. Now I understand this is so it can be hard in some cases, um, to get that second opinion form a national cancer Institute doesn’t create a cancer center because they’re the ones that are doing the research and they’re the ones that the national cancer Institute has seen as being taught in the field with respect to the research, the cutting research that’s being done for breast cancer. So you can get a better perspective than you might otherwise because they know what’s coming down the pipe that isn’t always readily available in the clinic.
Right, right. I love that. That’s really, really, really smart.
I gotta say one more thing.
If you’re going to get a second opinion, don’t go to someone else in the doctor’s practice. You want an independent second opinion. So ideally this person shouldn’t have any kind of connection to the doctors that you seeing, the surgeon, the oncologist, a plastic surgeon or whatever.
Right. That’s really smart and I would not have thought of that. So thank you for sharing that. So my last question for you: What are your top three tips for someone to establish a great partnership with their doctor?
This is going to be a long ongoing relationship. So it’s important from the get go to build rapport and trust drive to make this a partnership. You’re equal partners in treating the cancer and healing you. So be open, honest and specific about your concerns, your needs, your wants. Then, create a game plan and goal for treatment. You both can agree to. One that you can and will follow. If you can’t do something, let them know and why that is hard for you to do or you are unable to do it. Keep them advised, well advised on how you are doing and what you were doing to take care of yourself. Sometimes we unwittingly are trying to do the right thing for ourselves and our bodies that there may be supplements or herbal remedies or some other thing that we’re taking to help support our body and deal with side effects that may interfere with the treatment. So it’s important for the doctor to know what other things you are doing to help you in this journey. And then finally, always come prepared. Know what you want to learn and want to accomplish and the visit.
Absolutely. Absolutely. Well, Cheryl, this has been fantastic. I really appreciate your insight and appreciate just the knowledge that you shared from us from years of experience, and I would love to chat with you again some time.
That would be great, Adam. I’d love it. Again, I really want to encourage everyone to firstname.lastname@example.org because they have some phenomenal resources on partnering with your doctor and questions you might ask. They even have a category of questions you can ask your doctor, and it’s organized by subject matter so you can easily choose. And the very last one is what do you do when you’re first diagnosed? And you can go right online and find that out.
I love that. Cheryl, thanks again for being on the show.
Thank you, Adam. Take care.
Intro and outro music is City Sunshine by Kevin MacLeod. Ad music is Blue Skies by Silent Partner. The Real Pink podcast is hosted by Adam Walker, produced by Shannon Evanchec and owned by Susan G. Komen.