[00:00:00] Adam Walker: 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.
A breast cancer diagnosis can be overwhelming. Knowing which questions to ask can help you understand your diagnosis and advocate for yourself as you begin to assemble your healthcare team and develop your treatment plan with doctors. Finding the right providers is perhaps one of the most important decisions a patient will make post diagnosis, as it’s critical to find a doctor you’re comfortable with and who is well suited to treat your cancer.
Sometimes barriers exist related to finding a provider, for example, if insurance won’t cover certain providers or health systems. Joining us today on Real Pink is Miranda Zinn, a breast care helpline specialist who is going to share how Komen helps patients overcome some of the issues they experience both through our navigation efforts as well as our policy efforts. Miranda, welcome to the show!
[00:01:07] Miranda Zinn: Thank you so much, Adam. I’m excited to be here. Thank you for having me.
[00:01:11] Adam Walker: I really like getting to talk to helpline special. I think you might be the second or third I forget, but like, I just, I don’t know, it’s just something about what you do that I just really deeply appreciate and love to get your insights.
So thank you. Thank, first of all, thank you for what you do. To help people and now we can ask you lots of questions, so
[00:01:31] Miranda Zinn: Awesome.
[00:01:31] Adam Walker: All right. So, first question. When a patient who is newly diagnosed with breast cancer calls the Komen helpline, what are some of the most common stressors that they are experiencing?
[00:01:42] Miranda Zinn: Yeah, so when someone is recently diagnosed with breast cancer, there’s a lot going through their mind. Oftentimes they’re reaching out to us and feeling pretty overwhelmed, just trying to understand where they’re at with their diagnosis, what next steps might look like for them. So a lot of times we are hearing about a variety of barriers that a patient might experience particularly when.
Being recently diagnosed with breast cancer most commonly we find financial to be number one as, as far as concerns, whether that be related to the medical costs itself and care or non-medical related costs. Especially if somebody is going to have a decrease in income when they start treatment or those anticipated costs with getting back and forth to treatment or prescriptions, things like that that quickly add up when somebody is starting treatment for breast cancer.
So we’re hearing about those financial concerns. We first look at our Komen financial assistance program and then can identify some other resources to help patients with that. Sometimes we hear about transportation related concerns. Sometimes folks are just looking for support whether that be peer support, one-on-one from other breast cancer survivors who might be looking for support groups or just speaking to us on the helpline.
We’re all trained to hear from breast cancer patients and family members about. Any concerns that they might have as it relates to breast cancer instilling hope and providing that space for them to discuss whatever it is that’s on their mind. So that’s in a nutshell, what we do on the helpline. And then certainly we have those folks that give us a call and they haven’t even had that opportunity yet to speak to a doctor.
Maybe they received their diagnosis after having a biopsy, and they know that they have breast cancer, but they haven’t gotten to see a doctor just yet, or maybe they leave the doctor’s office after their first consultation, and they’re still feeling pretty confused and overwhelmed and just wanting to make sure that they’re taking the appropriate next steps so we can also help to provide that breast health education to them and make sure that they’re getting the appropriate care that they need.
[00:04:07] Adam Walker: Wow. That’s fantastic. I mean, that’s such an important and I guess comprehensive service. I mean, it sounds like almost every call must be incredibly unique and very different.
[00:04:18] Miranda Zinn: Absolutely. And like I said before we do hear commonalities and a lot of those feelings are across the board when it comes to other breast cancer patients. Feeling scared, feeling overwhelmed, sometimes feeling angry that this is happening. But certainly each individual has their own experience and whatever that call might be, we’re prepared to handle it.
[00:04:42] Adam Walker: Yeah. That’s fantastic. I love that. I love that, that you and a whole team of experts are there to help so many people.
[00:04:48] Miranda Zinn: Yes.
[00:04:48] Adam Walker: So, all right. So, how many providers will a patient typically have to see during their treatment? And are patients usually assigned providers, or are they responsible for seeking them out on their own?
[00:04:59] Miranda Zinn: Yeah, so it, it really depends. It depends on the type of breast cancer that they have, their staging, and what treatment options might be available to.
Oftentimes they’re going to be seeing a breast surgeon and sometimes this is called a surgical oncologist. And depending again on the type of cancer that they have, they may need to see other specialties as well. So it can be anywhere between one to four physicians, which sounds like a lot. So again, that surgical oncologist, there may be a medical oncologist if chemotherapy is a treatment option for them.
There may be a radiation oncologist if radiation therapy is recommended, and plastic surgeon as well. So if reconstructive breast surgery is part of their treatment plan or something that an individual is considering after surgery or during breast surgery that might be another provider as well. And I did want to mention also that it’s not just physicians. So there’s a whole team behind the scenes that’s available to patients if they need. So oftentimes there can be patient navigators available, so that way patients can have that assistance navigating the healthcare system. There can be social workers right there at the cancer center to help identify resources.
There might be financial assistance or financial counselors available and genetics counselors available as well. If a patient was eligible and decided to do genetics testing, so there’s all these other supportive services available as well as the physicians that the patient might see. So it may sound a bit overwhelming, but they’re really all there to make sure that the patient is informed and if they were interested in those other services, they’re available to them as well.
[00:06:54] Adam Walker: That sounds like quite a bit to navigate and sounds like that would be a very good reason for them to call you and talk through those things. So, that’s fantastic. And thank you for kind of helping to sort of break that down. I did not realize, I don’t think that they might have to see up to four different physicians. So that’s good to know.
[00:07:14] Miranda Zinn: I just wanted to add to that. Sometimes depending on the hospital system where they’re going for care, they might offer something called a breast multidisciplinary clinic. So they may be able to see these various physicians and support individuals all at the same time during their appointment.
[00:07:34] Adam Walker: Yeah.
[00:07:35] Miranda Zinn: Sometimes some hospital systems don’t have that service available, but if needed they can help to coordinate those appointments for them. And then I think you did ask a question related to “How are they choosing these physicians?” Are they choosing themselves?
[00:07:52] Adam Walker: Yeah.
[00:07:52] Miranda Zinn: Oftentimes when a breast cancer patient receives that diagnosis, there will be a process within the healthcare system that they’re going to for care. Oftentimes a referral may be placed for them to see whatever specialties might be needed. Sometimes that might mean the patient themselves reaching out to make that appointment. Sometimes that might mean somebody from that particular office reaching out to them to then set up next steps. So that’s oftentimes how that comes about.
Again, speaking in generalities because a lot of hospital systems operate differently. But, especially that waiting period, getting in to see a doctor, that’s really the time that patients can start to do some of their own research if they were interested.
[00:08:40] Adam Walker: That’s fantastic. So, then if they maybe do want to do some of their own research what are some tools and resources that you typically would provide to assist collars and just helping them know where to start?
[00:08:52] Miranda Zinn: Sure. So it, there’s a lot of information out there, so it’s understandable if people are feeling overwhelmed or not sure where to start. First and foremost, I recommend that if folks know somebody personally, whether it’s a family member, a friend, a neighbor, if they know somebody who has breast cancer, to reach out to them to see if they have any recommendations on a physician or even just to hear about their own experience and to get that support.
Sometimes they can help to advise on local physicians that they’ve had a good experience with. Or to go back to your primary care provider or OBGYN to see if they have any recommendations within their system for patients to be seen by a breast specialist. So kind of going to those trusted individuals whom they already have that rapport with can be really helpful because it’s coming from somebody that they know and that they trust. Also checking with their insurance company. I know it can be challenging to navigate insurances, and I know we’ll talk a little bit about that later as far as barriers and insurances, but insurances oftentimes have directories that contain physicians that accept the insurance, so that might be a good place to start.
So we do have some tools on the helpline that we commonly use when we’re trying to assist patients with locating breast cancer specialists. And there’s a few different ones depending on the type of individual that you’re looking for. First and foremost, locating cancer centers that are NCI designated and NCI stands for National Cancer Institute.
There’s very rigorous standards that are state of the art, that there’s more advanced research being done at these centers. So if a cancer center does have that NCI designation, that’s probably a good indication that all of their physicians are up to date with their accreditations. However, not always.
So we do have some other resources as well. And anybody can go on here and locate this information if they feel comfortable navigating online. There is the American Board of Medical Specialties where you can see that an individual is board certified within their certain specialty. There is also a resource called Doctor Finder which again, is an online database of doctors. And what this website will do particularly is it notates their certifications where they went to medical school, where their trainings were done. So it really helps you to get an idea of the type of medical history that the physician has had under their belt. And then also subspecialties as well.
So the American College of Surgeons has their own database. As well as the American Society of Plastic Surgeons. So you can look on there to confirm that these type of surgeon that you’re seeing, that they’re accredited and board certified. This sounds like a lot, and if people are needing assistance with this, they can also contact our Komen help line so we can help them to navigate through these websites and to get them the information that they need.
[00:12:24] Adam Walker: That’s a lot more tools than I had anticipated. So that’s kind of great. I mean, there’s a lot of options to go and look for quality quality care. So that’s really good. So, what advice, like for someone that’s been diagnosed, you’re talking to ’em what advice do you have for patients that are considering seeking a second opinion?
[00:12:43] Miranda Zinn: So, for anybody that’s considering seeking a second opinion, I think it’s also important to discuss this with your physician that you’re currently. Keeping them involved in the discussion, you may also need their assistance. With transferring your medical records over to the other physician’s office where you’re getting your second opinion appointment, you’ll want to make sure that they have your diagnostic testing, any relevant medical records, anything related to your care, so that way their team can evaluate and make the recommendations.
You may go to that second opinion appointment and receive the same response as your first opinion appointment, and that’s okay too. That can be reassuring to you to know that you’re moving forward with the most informed decision. You may go to that appointment and hear about alternative treatment options, or there might be something that differs a bit than what your first doctor said, and that’s really the opportunity to ask questions to see how this doctor or this team came to this decision rather than your first doctor.
And then making sure that your psyche, making sure that you’re circling back to your first doctor and having that follow up conversation with. So, it doesn’t always mean that you’re going to transfer over from your first doctor to your second doctor. It may just be a one and done appointment, but still it can be really valuable for you to know that you’re evaluating all of the possible options that you’re feeling informed. You’re feeling like you’re a part of your medical decision making.
[00:14:20] Adam Walker: Yeah. That’s so important. That’s so important. And more information is often a good thing. So, some people may not immediately realize how big of a role policy plays in the healthcare system. So from a policy perspective, what are some of the barriers a patient might experience as they search for a breast cancer provider?
[00:14:40] Miranda Zinn: So, as I mentioned before, oftentimes your insurance company has a directory of physicians or hospitals that accept your insurance. However, we find that some of these directories are not up to date, so that can be a barrier for folks that are following these steps that are reaching out to their insurance physician.
Hearing from that physician’s office or getting to that appointment and then being told, “Hey, your insurance company is not in network with our practice.” And then there might be a large out-of-pocket cost to them. So we encourage folks to reach to their insurance companies still and to make sure that they’re asking for those things. That they’re asking that their insurance company’s directory be updated regularly. That can be a barrier to care for folks that are using insurance. As well as other barriers as far as equitable healthcare. I know that this is something that our policy team focuses on, is making sure that there is access to equitable high quality care.
This can vary depending on where a patient is located. There may not be as many resources as far as transportation to get back and forth to their doctor’s visits that might mean even less options as far as physicians or hospital systems that they can go to. So that can certainly be a barrier for folks and we encourage folks, especially in those situations, to reach out to us on the helpline help. So we can notify our policy team first and foremost, that these things are happening, and then also for us to help to locate resources and to help navigate them through this so they’re not feeling quite as overwhelmed.
[00:16:32] Adam Walker: Yeah. That’s great. That’s great. And that’s I had not thought about like the directories.
Maybe not being up to date and having to kind of double check that. So that’s that’s really good information. So, so Miranda, this is fantastic. Lots of really good information here. Last question; knowing that all of this can be just profoundly overwhelming, what tangible advice can you give our listeners and how to make this process a little bit more manageable?
[00:17:00] Miranda Zinn: Sure. Well, first and foremost, I do recommend that folks keep a notebook with all of their questions. Write them down, and also make sure that you write down the answers to them as well as you go about and ask your physicians questions or reach out to our helpline and ask us questions. Keep all of that information in one place.
I also recommend that patients obtain their medical records. If possible, reaching out to their doctor’s office to make sure that they have access to those. Oftentimes nowadays you’ll find that a lot of healthcare systems do have electronic medical records, which can be particularly convenient for folks because there’s oftentimes an online app that they can use in order to access their medical records.
Typically with that electronic medical record, they can also send messages directly to their physician or to their care team, which can also help with creating that paper trail and making sure that if they do have a lot of questions, they can put them all on there and wait for their doctor to respond that way.
So that can be another method to making sure that their questions are being answered. I think also too, keeping in mind that we are available as a resource on the helpline, so even if folks don’t feel like they have a trusted family member or friend that’s able to help manage all of these types of concerns that we’re a resource to them both on the helpline itself. Komen does also offer a patient navigation program. So if somebody, especially those that are recently diagnosed or experiencing those barriers to care, they’re not alone in that. They can reach out to us and we can help to identify those resources and get them connected with the services that they need.
So I think it’s important for folks to keep all that information in one space. We also do have on our website, At komen.org, there are some great tools and resources available to those that are recently diagnosed or even those that are post-treatment particularly. We do have a section under our patients and caregivers tab. It’s under tools and resources questions to ask your doctor. So once you get to the point of actually having an appointment scheduled with a physician, you can access this list of questions. And depending on the nature of the appointment, there are different lists. So if you’re going in and you’re going to be discussing chemotherapy, there’s a list of questions that you can bring with you.
If you’re going in and talking about reconstructive surgery, there’s a list of questions for you, and we have a variety on there. So sometimes folks don’t even know what questions to ask. They just know that there’s an appointment coming up and a recently diagnosed, and they’re not even really sure what this diagnosis means.
That can be a great tool to go into the appointment and feel a bit more prepared. I also recommend that if at all possible, that folks bring in with them a second set of ears. So bringing in a family member, a friend, somebody that can go with them into the appointment so that individual can help to take notes. Perhaps they pick up on something that was said by the physician and they can just confirm the information with.
Allow that help in, I know it’s difficult sometimes for folks, but this is really the time to allow family and friends to help. Yeah. So, that, that is my recommendation with going to any of your important appointments with your physician.
[00:20:41] Adam Walker: So just to recap, I want to make sure I heard you right.
Number one, write everything down or have someone write everything down in some kind of notebook. Number two. Look at the pre-vetted or pre-prepared questions on Komen’s website because there may be questions on there that you might want to know the answers to, but don’t even think to ask, which is kind of amazing.
I did not realize those were there and I love that. And number three is bring somebody with you, have a second set of ears, ideally for them to be the ones to take notes if they’re good note takers. Because that can really help the process quite a bit. So is that, did I get that right?
[00:21:17] Miranda Zinn: You’re exactly right.
[00:21:18] Adam Walker: Yes. I love that.
[00:21:19] Miranda Zinn: Yes. We find that folks that utilize those those options. Options they’re going in, they’re feeling more prepared, and they’re leaving there with more of their questions answered and feeling more reassured with next steps well and supported because they have somebody with them.
[00:21:33] Adam Walker: So, so there’s, there’s that added level of support as well. Which I kinda love. So Miranda this has been really. Very insightful, very enlightening. And thank you for joining us today. Thank you for the work that you’re doing to help the breast cancer community. It’s so important and you’re making such an impact, and I don’t know that you get very many thanks, but thank you from this community.
[00:21:54] Miranda Zinn: Well, thank you so much. I’m so happy to be here. I encourage folks to reach out to us right here on the helpline if they have any questions or concerns. As move forward through their cancer journey. If you need our contact information, the phone number to reach us is, perfect.
[00:22:17] Adam Walker: Thanks so much.
[00:22:18] Miranda Zinn: Thank you.
[00:22:21] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com.