Talk To Your Doctor: At Your Appointment

Tina 0:00

we'll talk about that in detail, for sure. In a whole episode, that's, part of the series, right?

Leah 0:04

How to talk to my doctor, talk to your doctor. I think about those like pharmaceutical ads, talk to your doctor if this is right for you. Hi Tina.

Tina 0:28

Hi, Leah. How are you?

Leah 0:30

I'm doing well.

Tina 0:33

good to hear.

Leah 0:34

Yeah. So. Here we are with our second episode of our TA your doctor pod. And in our last episode, we talked about. How to approach the subject of integrative medicine with your physician. So how do you talk to your oncologist about incorporating integrative medicine into. Your cancer care.

Tina 1:01

Yeah. So we went over the generalities of that, right?

Leah 1:05

Yep. And now we are going to talk about, questions that you can ask. At your appointments. and also like, kind of like, you know, what to bring to appointments. And so this is kind of more for, know, maybe somebody who hasn't. Been to. see the doctor yet, or just, you know, you can think of these questions for follow-up appointments.

Tina 1:24

Yeah. Or maybe even if they're ongoing, but they hadn't thought of you, these things. I think some stuff we're going to talk about today may not be top of mind. It's things you wish you had done. If you had known ahead of time to do it before your appointments.

Leah 1:38

Right. Right. And so this is also good for anyone who maybe know someone who is going, has received a diagnosis and is going to go in to, um, To meet with their doctors. And. yeah. Oh, and then I guess, lastly, we're going to kind of cover what happens if maybe you don't. Like your doctor and you want to switch. or what if your doctor. leaves, What if they leave the. Center where they are, like what, you know, Kind of what happens. So.

Tina 2:10

yeah, yeah, yeah. So I think it's all, it's all relevant. It all happens a lot because there's a lot of turnover in medicine these days. It seems a lot of movement, um, as well as retirements. So, yeah. So let's get into the first subject, which is how to prep and what to bring to those first appointments, how to go about making sure you get the most out of those oncology visits.

Leah 2:33

Yeah. So, When we talked about this earlier this week. You. came up with. A great idea, which it seems kind of obvious, it was bringing questions. Like write down questions As you think of. Them before your appointment and this can apply to anybody. Like, you know, you get to the doctor's appointment and they're like, do you have any questions? And you're like, are chirping between the ears. As soon as you think of those questions, put them down in your phone, have a little notebook. So, you know, coming prepared with questions beforehand.

Tina 3:06

Yeah. Yeah. You know, and yes, writing them down is key because you think you're going to remember, because it might be a question you are pondering and it doesn't leave your mind. Of course, by the time you go through the routine of getting in the room and having your records updated and you're sitting there and the oncologist comes in, there's a lot going on and you might go blank right. At the, having it written in front of you, whether it's on your phone, on an iPad, on a piece of paper, but having that list of things that occurred to you beforehand is really important. No matter how. Good. Your memory already is because something happens in the room and, you know, it's hard to on the spot, pull up questions that you might have.

Leah 3:49

right Or you could, you know, of get like sidetracked and, and not remember it Cause I've actually had to ask my doctor on my phone. And then we start talking about something else and then it completely like. She leaves the room. And I was like, oh, I these questions. So.

Tina 4:05

Yep. Yep. So I think it's really important before the first visit to sit quietly and ask yourself. What aspects of the treatment are you most anxious about? Are you most concerned about what is really important to you so that you write in that kind of getting to know you visit or it could be halfway through treatment too, but what's really important. If you are really nervous about pain, for example, or you're really nervous about the nausea vomiting aspect or how it's going to affect your sleep, or, you know, you're worried about how you're going to function on your day-to-day your quality of life. What aspects be really specific about what aspects of your life are you most worried about changing after treatment? So I'll give you an example. I had people who are musicians, you know, and one of the most important things to them is their fingertips. I had a woman who was a violinist in an orchestra, and the one thing she didn't want to lose was, the dexterity and the feeling in her fingertips. It was everything to her. Now that's an extreme example, Right But making sure on whatever level, the side effects that you might be concerned about, just put that on your list. You may be worrying about something that's not going to happen.

Leah 5:22

Right. Right. and I think that is. A really good point about, bringing up the concern that is most important to you, whether it's how is this going to affect my work? How's. this gonna affect my hobbies? How's this gonna affect my day to day? My relationship with my children, all of that. Those are the really important questions that, You might not think of until later.

Tina 5:45

Yeah. And quality of life is something that you should bring up your quality of life only, you know, right. You see the doctor for however long in that office. the job of the oncologist is to focus on your cancer and you need to bring up other topics. I mean, they will query you. They'll ask you about pain. They'll ask you about symptoms that are side effects of the given treatment, but at the same time, your quality of life is not top of mind for the doctor, as much as it's top of mind for you. Cause you're the one undergoing treatment and you know, better than anyone what's happening.

Leah 6:16

Right. and then all of these notes that you're taking, if you get any handouts. From the doctor's. office, having one central place to keep everything. So getting a three ring binder. Is it keeper. If you're

Tina 6:32

Oh, gosh. Remember trapper keepers.

Leah 6:34

I had in them because not everything has holes. And so putting, lab reports, if you get summaries of your visit. Anything, sometimes the or nurse navigators will print out, about your medications. What medications you're taking, your medication list. Keeping your notebook and keeping your phone of the medications that you're taking. The supplements that you're taking, how often, and if you can take a photograph of the label, the front and the back of the label and have that, On hand.

Tina 7:09

Yeah. I think that's all good because you are going to be asked to share that information quite a bit. Right. And over time, I think it's really important during treatment to make sure you yourself get a copy of all of the information, all of the drugs, each time, even if it's at the end of your treatment and you just say, I'd like release of my medical records to myself and you want to do a hard copy. And I say that because electronic medical records don't exist forever, either in most states. And I don't know the law in every state, but every state has a certain amount of time that your medical records need to be available, but it's not indefinite. And so in the state of Oregon, I believe it's seven years that we're legally obligated to keep medical records. And after that, back in the day when we destroyed paper, they could be shredded. what that means is if you are 10 years out or 15 years, and you need to know what happened back, when you got treatment for cancer, you might be Sol right. So having a hard copy, even if you never read it, just getting it released, putting it in some kind of. Trapper keeper.

Leah 8:14

Trapper keeper.

Tina 8:17

Um, but just having that aside and just knowing that you have that file in your possession is probably a really good idea just for peace of mind, if nothing else. Cause there could be a day you need it and it's not available in the system.

Leah 8:30

Absolutely. Yeah. I'm so fortunate because this isn't cancer related, but. As a kid, up till I was 18, I went to military hospitals. And so when my. Dad retired. We all these folders. These. Orange folders with all of my military records. Like my health records. so, I have from like when I was born, I've got like the little. Footprints. Like when I was first born and every, I mean, I've got all that information up until I was 18 I went off to college Cause I stopped saving all of my medical records after then. but no it's like such a cool thing to have. So, with cancer treatment, I mean, there are patients who I've talked to. And I was like, so what chemo did you get 20 years ago? And they're like, I have no idea.

Tina 9:12

sure.

Leah 9:13

And it changes, it changes so fast these days yeah, it is a good thing. Just to kind of keep that on hand. So have your little vault of information that you can keep. And you don't have to carry it with you, but just know when you go home from an appointment to put those in there, any recommendations that are made at your appointment.

Tina 9:29

Yeah. and it's really interesting because what is in your medical chart, your official medical chart, doesn't always look like what you're looking at from a patient portal perspective. like Your actual reports are there where your, patient records sometimes is a watered down version of that they don't give you explicit, detail, um, I'll use a mammogram for an example, like when you have a mammogram and you get a letter or you get a note in your patient portal, it might just read, no findings or It was unremarkable, you know, all these phrases

Leah 9:59

Two thumbs up.

Tina 10:00

All of these phrases we have in medicine, but your report, your actual mammogram has a lot more information on it. You know, that has the findings, your risk of, breast cancer over time. Your, your BIRADS score. The BIRADS is the score from zero to five for the findings. So these are more informative pieces of information in your official medical chart that you don't always get through a patient portal.

Leah 10:23

Yeah. those are all good things for patients To request. And it's you're right. I mean, that's what you're signing,

Tina 10:29

since 1994. Yes. your medical records are your own. Yeah. Since 1994, there is a, there's a federal act that those records are not the possession of anyone, but the person they're recording. So with your permission, they can be dispersed to other entities, but it is your possession.

Leah 10:46

And, you can get imaging on CDs too. Which sounds so archaic, but sometimes it's nice to have that. in your file. One last thing to bring to your appointment. And it's not available to everybody, but. Um, Try to bring another person, try to bring

Tina 11:04

mm

Leah 11:04

of ears. Who also has their own notebook to write down because there Have been times where. Two people hear something different. Especially. in The times, the times of COVID we're not necessarily able to. Bring somebody with us to some appointments. But if you are able, whether it's a friend or relative, find someone that can accompany you to an appointment.

Tina 11:31

Yeah. And that reminds me of the other thing that I think we all can do now, or most people have the capacity to do. And that is to record the visit. I mean, I think that even if you have someone with you, there are times when you hear one thing, they hear another, and if you had a recording, you could probably. Break that tie, Right. You could probably figure out what was actually said. So I, if you can get permission, ideally get permission from the office, from the doctor themselves to record the visit that is really valuable and you might not need to listen to it, but it's there. If you have questions like, did they say this or did they say that, so it can be really useful. I find it tremendously useful actually. And I have people record the visits they've had with me I don't mind people recording that.

Leah 12:21

I think definitely how you approach it. I've had patients. recording it inall different spectrums. I mean. I, I walked in the room once. And it was like, the guy had a recording studio pretty much set up in there. I mean, he had everything all out and it was like really intimidating. It's really easy just to just up your phone and say. I'm really nervous. I forget things. I want to make sure I have this information. Correct. May I record? Some states you don't have to tell people if you're recording them in Arizona, only one person in a party needed to know. if they were being recorded and that could be the person recording so people could have recorded us. And. We had no idea. just, you know, put it out there and say, Can I turn on my recorder? My phone.

Tina 13:07

Yes. And I don't know about Android, but I know on apple, it's just called a voice memo. It's it's so simple. It's already in, it's an app that's always on there. You click record on voice memo and it will. Keep recording until you hit stop. So, yeah, I think that's, that's high on the to-do list too, especially when you're, first going through it and you might have a lot of anxiety and it makes it hard to think. And hard to remember and, you know, phrases are coming at you and it's new jargon, all of that stuff.

Leah 13:36

Yeah. And you get caught up. On one thing that they're saying, they're saying one part of. A whole. Spectrum of things and you're caught up and then you might miss. Another part of that. So, Yeah, that's a good tip. So, those are the kinds of things to bring to, to the doctor's appointment itself. And that brings us to the next part. Which is. What do we ask at these appointments? There are so many questions to ask at the appointment. And. cancer.net has a free app. That has this extensive list of questions to ask. And so we kind of picked out some of the questions we thought. you know, We could embellish on.

Tina 14:21

Yeah. And just so people know cancer.net is part of ASCO, a S C O right. It's the patient facing aspect of ASCO.

Leah 14:30

and what is ASCO?

Tina 14:32

The American Society of Clinical Oncology.

Leah 14:35

I put you on. the spot,

Tina 14:36

That's right. That's right. I appreciate that. Um, they could be very specific questions, but they can be very general questions, right. I think one of the things that I like people to ask is what the intent of the treatment is.

Leah 14:51

Yeah. Is it, curative or palliative?

Tina 14:53

Yeah. There's a Y in the road and the medical oncologist or surgical oncologist you're talking to knows in their mind, which road they're taking and the terminology is. Curative intent or palliative intent. And it doesn't mean it doesn't mean cure is off the table if you're on under Palliative intent, but intent is literal. Like, what is the intent of this treatment? If it's one that they don't believe they have the tools to cure, it will be palliative intent by definition because there's only two roads to take, right? If it's one that they believe, okay, if we line up these particular treatments, whatever they are, a certain number of people are cured, then it's a curative intent. So it's important to know that right in the beginning, because that frames a lot of their decision-making going forward.

Leah 15:44

I think that's a great thing to know, Personally with my mom when she was going through treatment. I don't think she quite understood. The goal of the treatment, even though it was, you know, repeated. Quite often. Yeah, it's, um, it can be confusing, but I think it is really good information To have, and then write that down.

Tina 16:03

Yeah. And, to be honest, I mean, I can tell you with broad strokes, there's a truism to this, and that is when something is meant to cure, then there's going to be less likely any, any reduction of dose, any delay of treatment, any either it's less likely to happen. Their, their quality of life is there. It's considered, but it's curative. So what they're hoping is to get you through the fires and the flames of treatment to the other side. So you can lead a normal life again. Right. So you're aiming for cure. So you're going to maybe prioritize quality of life a little less than you would during palliative treatment. When quality of life is very much higher on the concern list, because you're going to be undergoing treatment for quite some time. So the quality of your life over the longer term horizon just becomes more of a consideration during the palliative treatments.

Leah 17:02

And I think kind of going off of like, you know, what is the intent of my treatment? know, asking what are my treatment options. And. sometimes there might be an oral pill. Option. Instead of getting an. IV chemo. I mean, you know, what are the various options. For. the specific cancer that I have. and know that it's okay to. go for a second opinion.

Tina 17:28

Yes. Always. I think it's really important.

Leah 17:31

Yeah. it's reassuring. If you, go get a second opinion and they tell you exactly what the first opinion said, you're like, okay, good. I know I'm on the right track, I think. There's never anything wrong with, with getting a second opinion and we've all, heard stories of people who have gotten second opinions may have. gotten a slight change in their diagnosis, whether for the better or the worst. So. um, and, And to the doctor, I'm gonna, You know, get a second opinion on this.

Tina 17:59

Yeah. And on that note, if you can, once you have a cancer diagnosis and you're getting a second opinion go to somewhere, that is not the same facility, right. Or maybe not even down the road, you want to go somewhere that has a high volume of the cancer, and so that might mean you go from a smaller community clinic to the bigger city down the road, however many hours away that is, but guaranteed, if there's a higher volume, they may be doing things, they may be doing things that are a little bit more cutting edge. there may be clinical trials that are appropriate. So, okay, this is a palliative treatment track you're on but we're doing research and we're hoping that this will work in a curative way with some people. I mean, there's things that are happening in larger centers and academic centers that just aren't happening in our small community clinics. They just don't have the capacity for that. So I think that's important. A lot of folks also came to me and said, here's the treatment that was laid out by my oncologist. What do you think of it? And I always steered them towards the NCCN guidelines, which is what the oncologist was using. So the NCCN guidelines is the national comprehensive cancer network. There is a whole list of NCCN guidelines for patients on their website.

Leah 19:18

Yeah. And so that is, it's an Alliance of 31 cancer centers in the us, and I think most of them are with the NCI, the national cancer Institute as being comprehensive cancer centers.

Tina 19:32

And they are the guidelines that our local oncologists use. Those algorithms are what are being used to determine treatment in most clinical settings.

Leah 19:43

Yeah. So I can put a link in our show notes to the guidelines for patients. cause there is kind of a patient aspect of it and a physician aspect. And so the patient side is much easier to read I know this, this, this part is probably pretty basic, but it is good to know exactly what type of cancer you have, knowing the stage, knowing if you have a solid tumor knowing the size of the tumor, you know, like knowing if there's cancer elsewhere in your body, where it is, and this sounds like such A basic thing to say, There are oftentimes where think that they have separate cancers because there's in their brain and there's cancer in their lungs. And it's actually the same cancer. Sometimes it's not sometimes it is two separate cancers, but it's really, really important. Especially when you go to your family practice doctor, they can get your records, but you will know what your tumor is, what your stage is, ask the doctor. What does that mean? Because stage four for one cancer might be something different for stage four for a different cancer,

Tina 20:48

absolutely. Yes. Yeah. There are certain, certain cancers where stage four is even curable and we don't hear that a lot. People hear stage four and think the worst, but some subtypes of cancer that are even curable at stage four.

Leah 21:00

yeah. Again, that kind lends itself to knowing what your initial diagnosis is, you know, that, that kind of helps. And then also knowing what your treatments are, all these down And keeping records of that um, Really important question. And you'll probably get this information when you your treatment plan, but knowing what the possible side effects, both short-term and long-term be of a treatment and knowing how it will affect your day to day, asking like, how will this affect my sex life? How will this affect my ability to exercise? You know, even with the port placement, like that was a really big question with people was like, how soon can I do this? Can I pick up my child, you know, those kinds of things. Another question. And patients often ask this because that's kind of what you think of when you go through, especially chemotherapy is, you know, will I lose my hair with this treatment? not all treatments will cause hair loss, some of them cause hair thinning. Some of them don't affect it at all. And have had at least one, maybe two patients who came to their first appointment with shaved heads because They were anticipating losing their hair and then finding out that, no, not, with the treatment that you're going to be receiving. And you know, they were kind of being preemptive and they're like, I'm just going to get rid of my hair because I know I'm going to lose it And then it was like, you might not. And you most likely won't so finding out. Specifically, like, is this going to affect my hair? Is this going to affect my nails? is this going to give me neuropathy? Because I'm a guitarist. I play the piano,

Tina 22:47

Yeah. And on that note, realizing that any experiences that you've witnessed or seen others go through for their particular cancer could be completely different than your own experience. Right. So,

Leah 22:58

if it is the same and it is the same cancer. Yeah, for sure. Yeah. You can't predict what's going to happen.

Tina 23:05

yeah, so I think it's really important because we all learn from our own experiences through, either vicariously or, through our direct experience. So my thought is that you just ask as many questions as possible that are relevant for your scenario because you can't generalize very much.

Leah 23:21

And you can, in terms of the question of hair loss, maybe everybody knows this, but I'm putting it out there. you can get a prescription to get away. It's the cranial prosthesis, I mean, that can be available through prescription from your doctor. and so definitely ask for that I don't if you always are offered but ask and see if you can get one.

Tina 23:46

Yeah. And usually most communities have wig centers that specialize in that, some cancer centers have it, right in-house, you know, under their roof and other communities, swimming. There's usually, people who sell wigs in the community that specialize in that. And they may know if they take insurance or if insurance covers it.

Leah 24:05

Another important question is, asking about seeing a fertility specialist before you begin your treatment. Asking is this gonna affect my ability to children? And that, that's a definite before your treatment question, if you can, if you can get that in, because unfortunately, that hasn't always been brought up at appointments.

Tina 24:28

Yes, I've seen that. I think it seems like it's brought up more now than it used to be. And maybe because there's a lot more options now,

Leah 24:35

I mean, this is for, for both sexes, fertility preservation, I suppose,

Tina 24:40

yeah, that makes sense.

Leah 24:42

Asking what other support services are available in terms of is there, you know, are there resources to help me manage the costs that come up? Are there services available to my family? had, at the cancer center where I was, we had a social worker who was specific working with families and children. And They had a room set up with toys, with dolls who didn't have hair. with books. And that was an incredible gift for us to have

Tina 25:17

Yeah, I think a lot of centers have that now, at least social workers that can help families deal with what's going on. And you know, that. brings up the point that cancer happens to an individual and their loved ones. It's not happening to one person. I think the more that that's acknowledged and the better people upfront discuss the dynamics of that, whatever the family unit is, it doesn't matter, you know, could be could be kids, it could be parents, it could be, you know, your husband or wife. I actually, I think that it would be nice. I know it's not practical, but it would be nice if that was just part and parcel of the visits. Like that's what you do. You see a medical oncologist and you see the social worker you know, it's challenging on relationships.

Leah 26:00

Yeah, I mean, and that was a great, resource that we did have at the integrative cancer center was initially at first appointments, the very first time you come into the cancer center and you see the oncologist, I mean, you have a day loaded, full, a day or two loaded, full of appointments of seeing the social worker, the dietician and all of that. So that was a really cool feature that we had at one point. But you know, asking, who is my nurse navigator? You know, who do I turn to for questions? oftentimes these are, these are things that are provided to you, but make sure that you have this information in hand, When you're receiving all of this news, you want to make sure that. It's clear who you, who you are able to reach out to. If you need physical therapy, if you think you need physical therapy, if you think you need to see a dietician, you know, where do I go? Who do I, who do I ask? Do you have referrals to different services?

Tina 26:56

You know, on that note, some centers have a navigator, Right. An actual patient navigator. So they call it nurse navigators or patient navigators or somebody at the center that their job is to make sure you, as the patient are served. it's really important to have a point person. because It's stressful and you don't need, you know, a dozen calls that don't get answered and all the stress that comes along with that. So finding a point person now, a lot of centers have a point person. like I said, if they don't then. You or a loved one, Somebody needs to find a kind face behind the counter. And it could be one of the people who work at the desk, it could be the nurse that's working with your doctor, but you need to find that point person that is willing to, you know, talk to you, take your calls. You're not going to get to the oncologist every time you're going to have to find another way. Some systems have a nurse call in number. So there's always a nurse

Leah 27:57

Right. It's like a triage number. Yeah.

Tina 27:59

yeah, so for example, if you are at home and there's a fever, right. And you're, you're like, I'm not sure if my thermometer is correct or not, but it looks like it's about a hundred. Am I supposed to go to urgent care for this? Or can we stay home? Because otherwise there's no symptoms like little questions that are going to arise along the way that you need a point person to ask these. And so figuring that out ahead of time saves you a lot of stress in the long run.

Leah 28:27

oh, for sure. We had mentioned. Getting printouts of labs and appointment notes, asking your doctor to explain your lab tests. I mean, oftentimes they're like, oh, your, labs look fine. And then I would have patients come into my room and they're like, how come this is red? How come? You know, the doctor said, that my labs are fine and I can get my treatment, but this is red and this is red and this is red. then I would have to go through and explain it. So you can ask, like, can, you know, ask your doctor, like, can you explain this is red, but it's okay because not everything was quite cut and dry on a lab test.

Tina 29:04

Yes.

Leah 29:05

And so asking for a printout and then, having someone to be able to go over those lab results with you.

Tina 29:12

Yeah. And looking for the trends yourself, right? This is an out of range, but it keeps going higher. Every time I get a lab, this is something I should be concerned with or not

Leah 29:21

And maybe that's not for everybody. Maybe some people just don't want to know and they don't want to stress out over it? And speaking of testing, is genetic testing, something that needs to be done. Do my family members need to be tested? We're gonna go more into that on the next episode, but that's a really good question for people to ask,

Tina 29:40

Yeah. And the younger you are, or the more family history you have of various cancers, the more important that that be asked and, you know, attention be paid to that, whether it's appropriate or not. But we'll talk about that in detail, for sure. In a whole episode, that's, part of the series, right?

Leah 29:58

How to talk to my doctor, talk to your doctor. I think. about those like pharmaceutical ads, talk to your doctor if this is right for you. So, Asking, your doctor, you know, are there are there new clinical trials available? You know, do you know of another facility that might have a clinical trial available for me?

Tina 30:18

Yeah. And I, I mentioned earlier that it's really important if it's a more obscure or a less common type of cancer that you go to get a second opinion at a center, the called centers of excellence. Like for, I don't know, a brain tumor, for example, um, you want to go to a center that sees a lot of that type of tumor or sarcomas, for example, those are the places that we'll know if there's clinical trials for rare and unusual cancers or less. I don't want to call them. Less common cancers. Cause the most common cancers are breast, prostate, colorectal, and lung, and behind that is ovarian and pancreatic. So those are the more common, like most community clinics see a decent amount of that.

Leah 31:07

But there are subtypes of those cancers. You listed lung breast, know,

Tina 31:13

Yes.

Leah 31:15

be less common. it's a common overall cancer, but it's a less common subtype and there might be doctors out there. Who specialize in that subtype.

Tina 31:27

That's a good point.

Leah 31:28

I guess question is like, do I need to start treatment right away? Sometimes people have family events that are coming up, and they don't want to, go through chemo and then be immune compromised and then not able to attend a. child's wedding or a graduation. And so if there Is an event coming up, you ask, does, do I need to start right away? Am I able to go to go to my son's graduation it may be, Finding out the order of your treatment, if there's going to be more than just, chemotherapy, is there going to be radiation and surgery, all of those things,

Tina 32:04

Yeah, that's a good point because some of these you have to really just get on and start treatment right away, some types of cancer and other ones can wait. It's not going to make any difference, whether you wait a week or a few weeks, whatever the oncologist deems. Okay. Yeah.

Leah 32:18

what happens, Tina? If I don't like my doctor,

Tina 32:22

Oh man. I've, I've counseled patients through this.

Leah 32:26

that's why I'm you. That's why I'm asking. I've had it a couple of times where patients might not, you know, jive with the personality of But Yeah, I know that you have had experience with this.

Tina 32:38

Well, you know, no one gets excited and clicks their heels to go see their cancer doctor in a general sense, because it means you're going to the oncology center, which should at least be an experience that you're not dreading. Right. so I use that as one gauge, like, do you really dislike this. person to the point where you don't wanna be in the room? And my other gauge is, are they giving you good care? Like most of the time the dislike is not even personal. It's more like they don't trust them or they don't feel like the doctor is listening or present or respectful. If that's the case, then I help them find another. There's always a Hierarchy. in the room, but a respectable relationship, you know, being respected is still part of the bargain. Um, so I feel like if there is disrespect, if they're being blown off, I usually listen to the patient and the patient usually decides themselves whether they want to stick with that doc or not, because sometimes obviously finding a new one can be so stressful that it's just not worth the effort. You know, we're talking about this, Cassius sounds a lot like a breakup, doesn't It

Leah 33:47

It totally does And you know, the relationship you form with your oncologist, mean, I, I mean, I had patients that really enjoyed coming because everybody treated them with so much respect. And then we had an oncologist who happened to be my oncologist and they left, they left to go to another facility and he told me as his colleague, we were in the cafeteria in the morning and we were getting breakfast and I see him and I wave and he was like, oh, did I mention to you that I'm leaving? And I just remember like all the color left from my face. and. Immediately my eyes filled up with. tears. I felt like someone just took me to a restaurant to break up With me. And I don't think he quite expected that reaction from me. And I was just like in the cafeteria, like, oh, I didn't know how to cope it is, you put your life into this person's hands And you trust them and then they leave you. And, um, I remember like thinking like, cause he was just going to be on the other side of the valley and I'm thinking, why. Follow him, do I stay? And then I'm like, I know myself, I'm really lazy. I'm not going to go driving across the state of Arizona to go see, my oncologist. And so they brought on a new oncologist who worked with the breast cancer patients. and I love her and I get excited to see her, but it is, hard. Yeah, like, I mean, what do you do when your, when your doctor leaves you.

Tina 35:23

Right. Well, when the doctor leaves at least, I guess you, you like you did, you know, you find your next best. Soldier on. if you want to change your doctor, it can be complicated if you are in a smaller, town or a small city. And there's not a lot of choices. One by virtue of being small, they all know each other too. I have had patients told they cannot change. which I think is

Leah 35:49

Red flag.

Tina 35:50

Yeah. Just shy of ludicrous is what I was going to say. Um, your task at that point, if you really don't like this person and you really don't feel like you can trust them because more important than anything is the trust. Then you have talked to the clinic manager and it's the clinic manager that you have to appeal to, to say, I can't be with this person for these reasons and make sure they're good reasons. Right? You don't trust them as a good reason. Sometimes it's not easy and a loved one who is good at such things as sometimes useful to right, whether that's your, sibling or parent or whomever.

Leah 36:23

so those are all really good points about, you know, if, you want to leave your doctor, what happened with me where my doctor left me and not just me, all of us, um, you know, and another brought in for us to see. And Oregon, I know that as a doctor, if I were to leave my practice, I need to write letter to my patients.

Tina 36:49

Yes, you have to give them at least a doctor, if not a list of a few to choose from

Leah 36:54

Right. not knowing what The laws are in other states, yeah, I think that would be hard to If you're in a small, town, if you're in an area with a small cancer center and, you might have to go a farther distance,

Tina 37:08

On that note, can I just say one thing that I forgot to mention?

Leah 37:11

yeah.

Tina 37:12

When you get the second opinion, especially if it's at a center that's, at a distance from your home, cause being home, let's face it. It's where you want to be. Most of the time, if it's at a longer distance, but it's a center of excellence. A lot of community oncologists will work with a specialist. They will defer to that doctor. So, you know, you go back to your smaller oncology community clinic and have a treatment that might be recommended by the high volume larger center in the city done locally. So I didn't mention that. I think that's an important point because I do think that being home around loved ones is, is part of the medicine of healing. So being homeless ideal,

Leah 37:53

But some of those, centers that you traveled to, I know have housing available. And so asking if there is housing available, like in Indiana, they had housing for patients, who were receiving treatment. You know. if there's housing for family, they're discounts on hotel rooms, those kinds of things, seeing if that's

Tina 38:14

Yes. Yeah. I just wanted to make sure people didn't think that it's like it it's only black and white. You can do a bit of a hybrid type of treatment if you want to be home and get the best treatment possible.

Leah 38:26

right. Or, you know, maybe if I have. a discounted way of stating. Closer to the more comprehensive cancer center.

Tina 38:34

Yes. Depending on your support system and where you want to be. You know, there's one thing that needs to be brought up that. I am. I'm very opinionated about this and that is me opinionated. One of the things that I think people should ask their doctor is, are there any markers, tumor markers, or other markers in my bloodstream that can signal the presence of the tumor? This isn't a given for all types of cancers. It's commonly done for particular cancers like pancreatic cancer. There's a marker called 19 dash nine for ovarian cancer. They will very commonly do a CA 1 25 and do that routinely before treatment, during treatment, after treatment to watch for recurrence, the reason I want people to ask this really early in their treatment is it's not all of them are valid 100% of the time. So let's use breast cancer. For example, you can ask for a marker. There's a couple that are used. One is called 15 dash three. The other is, 27 dash 29. In any case, they don't always show up in the blood. So if someone has a breast lump, it's been identified as cancer And, they get a blood test done the tumor marker. Always going to come up for a hundred percent of women am might come up for a certain percentage of women for the women. It does show high-end. After treatment is over, you can take that parameter, that tumor marker test once a year thereafter, this is not routinely done, and it's not recommended in the guidelines for standard of care, but you could do this and you could be apprised of a recurrence much earlier than you would when you wait for it to show up in an imaging or wait for symptoms to develop over time.

Leah 40:26

And yeah, those markers definitely do not show up in all patients with breast cancer patients. my markers were checked at my first appointment and they were negative and they were never checked again.

Tina 40:37

Right. because they were negative. So they're useless.

Leah 40:39

Yeah. And so there's no need to, to check in the future for those markers. And that's is like, how come at my first test? You checked for these and now you checking again, you know, you're not checking anymore.

Tina 40:50

Right. Because if they're negative, when the tumor is present, they will always be negative. Even if you had a recurrence because your tumor doesn't make that particular protein. in any case, I saw a lot of people who never had any markers done that could have been done, but I saw them post-surgery And there's no evidence of disease running the cancer markers. At that point, I have no idea whether it's a valid marker for that person or not, because it was never established while the tumor was in place. So that sounds, um, kind of obvious because from a logical rational perspective, that's an obvious thing to do, but I will tell you it is not standard of care and you as a patient need to advocate for this. So opening up that conversation and asking your oncologist, is there anything that can be measured while the cancer is here? Because once surgery in particular happens, that opportunity is no longer there to validate the marker with your given tumor.

Leah 41:43

And these markers are different than, like in breast cancer like hormone receptor status. Just those are, those are different markers.

Tina 41:50

right. Yeah. This is a circulating in the blood. So it's, it's a blood test. That's done.

Leah 41:56

Yeah. So I feel like, I feel like this is one of those episodes that we could just keep talking. This is going to be one of those 24 hour episodes,

Tina 42:07

this is the kind of discussion that lends itself to kind of a live event or something, right? It's like, how would I do this? Or how about this? And maybe, maybe that's something we can do. Well, we

Leah 42:14

Yeah. At the end. Yeah. At the end of the pod, after our next episode. The week following, ideally we will be doing, alive and we can answer more specific questions and talk about more stuff. If nobody has questions for us, we'll just start winging it But, yeah. So the next episode is, going to be talking to your doctor about genetic testing.

Tina 42:37

Yeah, that'll be, that'll be a good discussion when to ask about it. When is it appropriate? has the system set up, we've come a long way and genetic testing

Leah 42:47

Yeah, we'll probably start with some basics and then move on to, uh, more complicated stuff. And remember to check us out on and Facebook. And I tweet on occasion.

Tina 43:03

yes. Don't forget to rate, review, subscribe. All of this helps us get to more

Leah 43:09

like us, please like us.

Tina 43:14

No. If you find this information valuable or you think it's valuable for other people, please send it forward And share it out there in the world. because that's why we did this. We were hoping to help more people. And the more you share it, the more people we're helping,

Leah 43:27

And if you want updates, for when we put new stuff up on the website or, any sort of updates that we might have, I'm thinking maybe sending something out once a month or maybe a month, I'm not going to send a whole bunch of stuff out, but email us. You can email us@thecancerpodatgmail.com. And check out our website. It's still in the baby stages, but we got a website up.

Tina 43:56

a fledgling. website.

Leah 43:58

It's a fledgling. Well, on that note, Dr. Leah Sherman

Tina 44:06

And I'm Dr. Tina Kaeser

Leah 44:08

and this is the cancer pod.

Tina 44:09

until next time,

Leah 44:10

Peace out.

Tina 44:12

out.