The First 30 Days After Diagnosis
Aimee (00:01)
Hearing the words you have cancer is frightening and bewildering, even for those who are in the field of medicine. In this segment of Voices in Oncology, we will discuss the ramifications of hearing the diagnosis and learning to find a rhythm. What does a patient experience during the first 30 days? And what can we do to make that journey less frightening and more coordinated? Welcome to Voices in Oncology. I’m your host, Aimee Fazo. Joining me today is my co-host Amy DePue.
Today we will discuss the initial 30 days following a cancer diagnosis. We’re going to discuss how to break it down and the barriers of newly diagnosed patients, their caregivers, and family space, even before they meet their care team. Welcome, Amy.
Amy (00:47)
Hi Amy. It’s nice to see you.
Aimee (00:49)
Good to see you. Today’s topic is so important. We hear stories from our patients about how terrifying it is to receive a cancer diagnosis, so much so that they’re immobilized with fear.
Amy (01:02)
And that’s a a very apt description of what patients say to me when I call them about their newly diagnosed breast cancers. I have found that many patients experience some really profound sadness and sorrow and fear and a hopelessness and every one of them will say that it’s very hard to overcome. That’s why early access to care and those early conversations with patients, even before they meet their team is very, very important.
Aimee (01:34)
I would like to talk more about strategies on how we can help those patients. Why don’t we begin at the moment of diagnosis? In your role as a clinical navigator, you speak to a lot of these patients in that first 24 to 48 hours of their diagnosis. What are some of the emotions that you encounter?
Amy (01:52)
A lot of shock and a lot of fear. Patients, I think, gravitate towards Dr. Google or Claude. I actually had a patient last week who read to me what her conversation with Claude was all about. And I think maybe that’s comforting to some, but maybe not to all. There are a lot of questions right off the bat. There’s some anger involved there as well. So the whole idea about early connection with these folks, especially since these things are now at the click of a button available for people to see, is for somebody who is in the know, who does this for a living, who works this every single day, to pick up the phone and call and say, “Hey, I know you just got this diagnosis and I just wanted to talk about it.” I will say that it is very important for that phone call to also acknowledge that these people have probably looked at Dr. Google.
I think newly diagnosed patients just really don’t know what they don’t know. And that in itself is very frightening. In that conversation, I try to talk to those folks, giving them some real tangible things that they can hang on to. If I’m making the phone call, I give my phone number or way to contact somebody in the department. But there’s always a lot of process that that they need to understand. And I think just going over little bits and pieces of it in that very first conversation opens that door and they all of a sudden do have questions. Even if those are questions that in a clinical nurse navigation role are not questions that I should answer, it’s easier for me to be able to say, “That’s an excellent question. Let’s write that down.” And so then there is this collegial feel. There’s somebody there that they can connect with. There are lots of questions that do come out. Some of it is very much about logistics, some of it is about disease process, some of it is about expectations for the treatment team. Just a really good time to give them a little bit of a pathway to follow with all of them.
Aimee (04:02)
So, the uncertainty with all of this can be enormous and there is so much information that patients need and want at this point. Is that right?
Amy (04:12)
That is correct. You know, I think it’s the obvious questions about pathology and understanding what those numbers mean. There’s a lot of discussion in these first phone calls about staging. And that is one of the very first things they want to know. Am I going to die? How quickly do I need to get this taken care of? Those kinds of things. In those initial first few days, it’s really good, as I said, to give some of these folks a blueprint to know what is going to happen and it helps erase some of that need to hurry up. Let’s hurry up and get something going when in fact this is the time for things to be very calming and let’s be thoughtful and precise.
Aimee (04:58)
Can you tell me what else is happening at this point that patients may not be aware of?
Amy (05:04)
Something else that patients always want to know. Well, I while I’m sitting over here and I’m chewing my nails to the quick, what’s going on? What are you doing? What are you going to do? What is what’s going to happen here? And so there’s a lot of work that goes on from the moment we get the notification that a patient needs us to step in and they need our services. And that starts with the intake team, who is trained pretty specifically to know what to ask. It can actually take a couple of days really. You know, smaller hospitals, community hospitals don’t have all the resources that a larger place has. So, if they have sent a pathology out, for example, in breast cancer, we really rely on those biomarkers. And some of those smaller places don’t report biomarkers for about 5 to 7days. So, in a patient who is expecting to be able to sit down in front of somebody and have a plan put in front of them, it’s really difficult to say to them, “We don’t know yet. We can’t tell you that yet because this and this and this has to happen.” So, there’s a lot of coordination that goes on behind the scenes that I think if somebody were a little fly on the wall, they would be amazed at how much gets done. It’s a large number of patients that come through that need things. So, it’s coordinating with the different departments. We’ve talked a lot about multidisciplinary departments. And that’s true here.
The thing that goes on behind the scenes that maybe the patients aren’t aware of too is that whole topic of the SDOH (social determinants of health), the barriers to care. That we have talked a lot about this in previous podcasts, that one of the initial questions after the gob smack has already happened is, “How can I afford this?” It’s going back to recognizing the fear and the unknown and the and just the terror and the horror of having somebody be delivered of those words that that they have cancer. So, there is a whole lot of stuff that goes on behind the curtain, so to speak, and it’s all for the good. It’s all it all is taking us to that place of being thoughtful and being sure of what we’re dealing with.
Aimee (07:15)
That’s a lot that’s happening with many people coordinating care, and you’re just discussing that first week.
Amy (07:22)
Yes. So actually the first couple of days.
Aimee (7:24)
Yeah.
Amy (7:25)
Yes.
Aimee (07:26)
So, as we move into the second week, what is happening?
Amy (07:31)
Once we have the ability to determine that somebody is eligible to come in for a early access appointment, once we get them in to see a clinician and get the initial disease teaching taken care of, they’re seeing a nurse practitioner or a PA, they’re getting that first glance of the trifecta of the imaging with the pathology, with the clinical exam that is done, and they’re talking to a provider about genetic testing and what that looks like and why we do it and how long it’s going to take and what’s the implication behind that, and when can I sit in front of this geneticist person and talk about this? That in itself is a good conversation to have with folks that they maybe don’t think of right off the bat, right?
There’s talk about why this patient will need to see not only the surgical oncologist, but the medical oncologist and the radiation oncologist. And sometimes we can get those visits put together during that second week, but not always. And really, maybe for that patient it’s not important to cram all this in together as long as we have something that is moving forward.
In breast cancer, it’s quite often that patients will go to surgery first if things line up that way, they go to surgery first. And so they can take care of that piece of that treatment plan and then meet the medical oncologist when the medical oncologist has all the information available to them to make a very sound and thoughtful plan. The first 7 days we’re all crazy, and the second 7 days we’re starting to get going on things. Sometimes during that day 7 to 14, we can get the younger patients in to see MFM (maternal-fetal medicine) folks, the fertility folks, and maybe talk about the FMLA paperwork at that point in time. Maybe that’s the time that we sit down and regardless of whether or not they have a date for when they’re going to surgery, you know, sometimes after they’ve seen that APP (advanced practice provider), it’s determined that they need more imaging done. Maybe the diagnostic stuff was good, but there’s a question and we need a bilateral MRI. So, that’s when that’s arranged and that’s when we start filling in the calendar. So, there is a lot of activity.
Aimee (09:58)
So, patients might feel like they’re just waiting, but in actuality there’s a lot of things happening and are getting prepared for them for what’s to come. Does that sound right?
Amy (10:09)
That sounds exactly right. It’s a very fair statement to have made. It goes back to that idea of being thoughtful and more concise and precise about what it is and where we’re going, going back to that very first day, giving them a blueprint to follow. With the understanding that maybe we take a detour here and there, but things are happening. So even stepping back to that first conversation, having them understand that, yes, we found this mass.
Yes, we know it’s there. Yes, it has to come out. Yes, you need to have treatment. Things need to happen. But they, not getting them done in the first two or three or four days, or even in that second week, is not going to make that cancer grow. It is a time to be thoughtful and considerate.
Aimee (10:57)
I think that makes so much sense on giving patients a blueprint because knowing what to expect is going to just make this process easier. Yes. So how about, you know, we’ve talked about the first two weeks now. What about the going from the second to the third week?
Amy (11:13)
This is the time when the patient can kind of move from that I have cancer feeling to where is my treatment plan? What is my treatment plan? By the third week the patient has probably seen, I hope has seen, please let them have seen the surgeon. Or if it’s a patient who’s going to go straight to medical oncology for whatever reason, maybe triple negative, or maybe it’s a HER2 positive patient needs to get systemic treatment going, then that medical oncologist has also been brought on board and they are sitting down in front of the medical oncologist. Generally, that is the week that those provider visits start coming together. Then there is really more discussion about what that plan is going to look like. The physician, medical oncologist has gotten all of the information that they need, especially if it’s for a patient who’s going to go to medical oncology first. And so the physician is able to sit down and say, here are the drugs we’re going to use. This is how long this is going to take. This is why we’re doing what we’re doing.
Aimee (12:21)
After kind of getting this treatment plan, that lets patients then begin to think about, okay, how are they going to change their life now that they have a plan for their cancer? And there’s still a lot of planning that needs to happen. So even if they have a treatment plan, there’s many steps that need to happen after that. So, what can you tell us about that final week of the first 30 days?
Amy (12:46)
Well, so, you know, I start my conversations out with my newly diagnosed patients by saying, “Rev your engines, ’cause this, you know, this next 30 days is going to be really busy.” And by the time we hit that last week, I frequently have somebody say, “You weren’t kidding”, but that last week we still do have the patient logistics of who’s going to take care of the kids, how long do I have to be in the outpatient infusion room? If they’re going to surgery, what do I need to prepare my family for when I come home? What is this going to look like? How long am I going to be without the ability to drive a car? How long am I going to be on pain medicine? All of those, if they have not been addressed earlier, now is the time to get that done. And then on the clinical side of this, there is there’s a lot of teaching that still has to be done. You know a lot about that.
Aimee:
Yes.
Amy:
We’ve talked about some of this stuff with pharmacy and how important all of that is. My question to you is so what needs to be addressed when you sit down and talk to these patients and what follows that? Because you don’t just walk in the door. I know you. You don’t walk in the door and just say, “Well, here it is, here’s here it is on paper.” What do you do?
Aimee (14:01)
So, for patients who are going to start with systemic therapy first. So, obviously medication education is incredibly important. We discuss a lot of things during that education time. We’re going over the specifics, like we’ve talked about, like how to take the drugs, but also we’re talking about how that impacts their life and importantly how to make sure that they know what to do if problems happen. So trying to empower the patient to be able to help care for themselves during this time. And if they can’t, who do they talk to when things are not going well?
Checking what other medicines they’re on, because that can influence, you know, like by drug interactions, for example. But also patients need prescriptions at this time, so making sure that they can get those prescriptions and sometimes there are things that we need to do to help for them to get those prescriptions. We’ve talked a lot about patients are worried about cost, so those are things that we start to address, you know, during that visit. And then there’s some more of the practical things. If a patient needs a port, we support that in that education session. We might have to do an EKG or an echo, for example, because we want to make sure that it’s safe to proceed with chemotherapy. So those things that can happen during that session.
Amy (15:19)
It’s not a ten-minute discussion. You know, get your notebook out because we need to go over some of these things and you can refer back. Things at home have to be addressed. Is the FMLA paperwork ready? If they’re going out on short term disability, has that been addressed? Who is going to take care of you when you’re home after the first day or two or three following chemotherapy? And what are their questions? We can’t just leave them out of this conversation. They are very much a part of this whole group of people that are going to surround this patient. We’ve had a month of doing all the things, as one of my friends likes to say, we’ve done all the things, but have we been appropriately addressing the emotional side of all of this, the mental health piece of all of this? Do we need to make sure that from the very beginning, does somebody need a little bit of extra help, somebody to talk to, somebody that they can work some of this through if they’re not able to work it out themselves?
Aimee (16:19)
Yeah, there’s so much going on and you’ve made it really clear that your role is putting all of these pieces together and not just saying, “Okay, here’s your appointments.”
Amy (16:29)
Yeah.
Aimee (16:30)
Right.
Amy (16:30)
Yeah.
Aimee (16:31)
So what else are you doing at this point?
Amy (16:33)
Well, for the clinical navigator, there’s a lot of yes coordinated appointments. It’s not the only thing that navigation does, but we do have to coordinate those. We need to make sure that all of those providers, the surgeon, medical radiation, oncologist, all of the people who also support them, so the APPs, other navigators, infusion, all of these different moving parts need to be communicating with each other. And a lot of times that comes down to the navigator making sure, you know, the cruise director, I think is what we used to call it way back in the day. We would make sure that everybody has gotten what they need from each other, that the patient is still centered and that everything is moving along as it should be. There’s a lot of referrals that are being made, regardless of how advanced we get in our technology. There’s still a lot of paperwork that has to be done. And so it’s the navigation team that kind of has to do that. And then of course it’s those social determinants of health that we really have to recognize that can change on a dime. You know, somebody who comes in and is well equipped to meet all their needs all of a sudden, second month, third month of chemotherapy, or maybe it’s right after surgery, they realize that there’s not going to be enough of something to go around. And so, it’s revisiting that. It’s that going back to our favorite phrase, ask early, ask often. It is a lot and the first 30 days are usually some of the busiest days.
Aimee (18:15)
It is a lot. And it’s so new for patients. They don’t even know how to navigate this path. And that’s why you and people who are in your position are so critical, because people really need that guidance.
Amy (18:30)
Yes. I tend to say to a lot of new patients that this is my world. This is where I live. And I don’t want them to have to live here for long. We work together and we get them through this and on we go.
Aimee (18:42)
So, Amy, do you have a patient example that you can give us for perhaps a patient that sticks in your mind about their first 30 days of diagnosis?
Amy (18:53)
This one particular patient that I am thinking of was a retired physician. And he was actually accompanying his wife for many of her cancer treatments. And somewhere along the line, and I’m sorry, I don’t remember exactly when this was discovered, but he discovered a little mass in his breast.
And so he quietly went about getting a diagnosis for it and he ended up on my referral desk and I called him. Somewhere along the line in our discussion, it occurred to me that he was a retired physician. He’s got some experience with how things moved through the system. He was not an oncologist, but still there is a little bit of familiarity that goes with that. And not only that, but he was dealing with his wife who was very early in her diagnosis. So, he had already experienced some of this. So, I didn’t want to burden him with some of the regular talk. So, our conversation was totally different, but his first 30 days were not different. His first 30 days were still full of how am I going to deal with things that I have to do with my wife, for my wife. How am I going to support her? How am I going to get through my own diagnosis and my own treatment? In the end, we had our 30 days of ramped up emotions and busy work and all the things. But it got done. And he has a really good team.
Aimee (20:23)
Thank you for sharing that.
So that’s the first 30 days. A new diagnosis is confusing, scary, and overwhelming. And the first 30 days should not be a scavenger hunt for our patients. A lot is happening in the first 30 days. Many people are involved and many steps are required to coordinate this care. The patient shouldn’t have to figure out the healthcare system while simultaneously processing this life-changing diagnosis.
Navigators are uniquely positioned to guide these patients down this new path. Amy, thank you so much for going over the first 30 days and sharing your expertise with us.
Amy (21:03)
Thank you for having me again.
Aimee (21:04)
And thank you for listening to Voices in Oncology from STO. To learn more about STO and future podcast episodes, please visit sto-online.org.
Disclaimer
Voices in Oncology is produced by the Society for Translational Oncology, STO, for educational and informational purposes only. Content does not constitute medical advice and should not be used as a substitute for professional clinical judgment. The views and opinions expressed by guests are their own and do not reflect the official position of STO. Mention of any product, service, organization, or therapy does not constitute an STO endorsement.
Clinicians should exercise independent judgment in applying any information discussed to patient care.