The EngagED Midwife
The EngagED Midwife
Cancer Survivorship Without A Finish Line
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“Survivor” sounds like a finish line. For many people, it feels more like a label you’re handed while you’re still trying to process what just happened. Cara and Missi get personal about cancer survivorship, using Missi’s breast cancer journey to talk about the part nobody can fully prepare you for: living in the in-between, where every new ache can trigger scanxiety and “life after” doesn’t come with a clear map.
We walk through what survivorship means clinically and emotionally, including the three phases often described in the literature and why the extended phase can feel like a muddy mess. We also unpack the real-world logistics of post-cancer care: how your team can grow from a PCP and OB-GYN to a surgical oncologist, medical oncologist, breast navigator, physical therapy, lymphatic therapy, and mental health support. If you’ve ever felt overwhelmed by appointments, paperwork, and the mental load of decision-making, you’ll feel seen.
We dig into high-interest survivorship topics for breast cancer patients and the clinicians who care for them: endocrine therapy (aromatase inhibitors like anastrozole and SERMs like tamoxifen), fatigue and brain fog, bone density loss and DEXA scans, osteoporosis treatment options such as bisphosphonates, Zometa, and Prolia, and the evolving guidance on topical vaginal estrogen for genitourinary syndrome of menopause. Cara also shares what she’s learned about lymphatics, lymphedema, compression sleeves for travel, and why protecting an arm after lymph node removal can be a forever habit.
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#CancerSurvivorship #BreastCancer #BoneHealth #Lymphedema #LifeAfterCancer #BodyMindSpirit #TheNewNormal
Why Survivorship Feels Personal
SPEAKER_00Welcome to the Engaged Midwife podcast. This is Kara. And this is Missy. Hi, Miss. Hey. Today we're gonna get a little personal. How's that sound? Yeah, I'm gonna not cry. Yeah, I was thinking as I said that when are we ever not personal? But this is a b this is a big topic today.
SPEAKER_01Yeah. I mean, we've talked a lot in our podcast about breast cancer. Yeah. We've done like several episodes on like screening and those things. And we have talked, I think, some about like my story and my diagnosis and those things. But today it's like, what's on the other side?
SPEAKER_00Yeah, we're gonna talk about cancer survivorship and what that looks like and what it means for the patient, but also what it means for us as providers and how we can help support patients. Is that Adele?
SPEAKER_01Hello from the other side.
SPEAKER_00You will not get me singing. No, ever.
SPEAKER_01But I think that's Adele. So that's where we are. Um, so I think um I said to somebody the other day that I have not hit survivorship. You are though, according to the definition. According to the definition, yes. But survive being in a definition of something versus actually feeling like you are living that or in that mindset is totally different. I get that. Um, I get that.
SPEAKER_00So um, yeah, where do you want to start? Well, I think it's helpful to even start with what the definition is, but I think what's gonna be so helpful to our listeners is really getting into how it feels and if you're willing to share um, you know, kind of what you just said, how what a definition is versus how
Defining Cancer Survivorship
SPEAKER_00it actually feels. So according to the National Cancer Institute, an individual is considered a survivor from the time that they have their diagnosis through the rest of their life. And so it's a critical distinction to think about a survivor, isn't something that comes after the treatments and after the diagnosis and all of that, but actually living through the treatment um is surviving and then going beyond that and what it means, long-term impact on their life, really, because they are a survivor for the rest of their life.
SPEAKER_01Yeah, it's but it's also like a very strange place to be.
SPEAKER_00Yeah, I'm sure.
SPEAKER_01Because I literally did not ever like was not in any kind of survivorship mentality at time of diagnosis.
SPEAKER_00Yeah, I think a lot of people, I mean, I'm guessing because this is what I've heard from other friends as well, is like once they get that like no evidence of disease, yes, of diagnosis, or once they've finished their surgery or they've finished their radiation, then they feel like a survivor.
SPEAKER_01Yeah, like no evidence of disease for me was early on, like um January. But then I didn't get um my no chemo news until almost March. And so that's really when I feel like I hit that place where I was like, oh, this um feels more like I can like move on to the next thing because I don't need chemo. Yeah.
Acute Extended Permanent Phases
SPEAKER_00Um, but in the literature, they talk about three phases and they talk about kind of how you're describing it in that that acute time is the diagnosis through the end of their initial treatment. So that could be surgery, chemo, radiation. It's the immediate side effects of surgery and that surgery recovery if you have that. Um, and then extended um survivorship is that transitional period that's post-treatment where you're monitoring for recurrence and you're managing the late effects. And I think you're gonna talk to us about the psychological impacts as well. And then permanent is long-term survival, and that's years after treatment. Um, and we're looking at quality of life, we're looking at what some of the side effects of treatment could be, um, especially long-term. We're thinking about screening for other future cancer, that kind of idea.
SPEAKER_01This is all like a muddy mess for me. Yeah. Because the only thing that feels very definitive is the acute phase where you're like doing the things. But for me, like the extended part and even the permanent, the permanence parts of it seems like like a muddy mess of like, I'm never gonna not think something is a symptom now. Right. And even though that's like in an ex the extended and not in the permanent piece, like I don't go a single day without being like, is that a symptom of something else?
SPEAKER_00Well, and I hear so many people, and and I'm sure you can probably, you know, like scan ziety kind of idea of every time you have a test, are you gonna like wait for bad news? Or um any, I mean, even you've talked to us about your bone scan because you needed to have that done for you know, medication that you needed, and then you get another diagnosis after that, and then you have to manage that diagnosis, just a lot.
SPEAKER_01Yeah, it just feels like life before and life after are so different, and everything involved in life after is unknown.
SPEAKER_00Yeah, yeah.
Building A Post Cancer Care Team
SPEAKER_01So, um, and I will say that like when you before cancer, you have like your PCP. And if you're a female, you have an OB or a GYN, like somebody that you do like well-woman things with. Now, some people do well-woman with their PCP, which I think is also great. Yeah. But we have a small group of people that we see like on the regs. Yeah. I literally, like somebody was like, I can't believe you have so many appointments still. And I was like, You wouldn't even believe what my team looks like anymore. Yeah. So who is on your team? So my PCP, Jen Myers. What's crazy about Jen is that she got diagnosed with breast cancer almost one year to the date before I did. So I walked that with her for a year. And then when I got my diagnosis, she was amazing, not just because we were friends, but because she was also my PCP and she was also a survivor. Like there's all these things, right? Our cancers were so bizarrely different. Um, and she had chemo and she had radiation, she did all the things as well as a mastectomy. And she's younger than me by I think five or six years. So um, and it's crazy because I have a survivorship group now, by the way, that like has women that had all different kinds of cancers in it, and it's women from like all different parts of my life, and we're all different ages. We literally had a couple of us had the exact same cancers, but very different treatments. And so it's this is not like a cookie cutter like situation. This is like I might have had, you know, stage one invasive doctral carcinoma where somebody else might have had the exact same thing, and I had a bilateral mastectomy and I'm on aromatase inhibitors, and they might have had a lumbectomy and radiation and they're on SARMS. Yeah. So like everything about that's so different. But so like Jen is my PCP. Now I have a surgical oncologist, and she is the one who did all the surgical things. She did my lumbectomy, she's the one who actually did the mastectomy part of my surgery. And so she is only surgical oncology. Then I have a medical oncologist that I see who manages all the other things. He manages um all of my medications, my osteoporosis, like all of those things. I have a lymphatic specialist. And so now I see my lymphatic person. I think we're going to talk about lymphatic things here in a little bit. Um, I see her twice a week because I had some lymph nodes removed from my left arm. If you look at me, you can't visibly tell that I have swelling, but the measurements are off. So she's been working now for about six or seven weeks on my left arm in terms of like trying to get me more mobility. My mobility was really impaired and um like decreased some of the cording and some of like the lymph things. And I think we're gonna talk more about the lymph part because it's so interesting. Yeah. Um, and I have a physical therapist that I see because you know, I had my breast amputated. And so sitting around in a chair for eight weeks didn't really do me a lot of good. It was really like hard on my back and my shoulders to like sit still for so long. And so we're working through like some muscle contracture kinds of things from that.
SPEAKER_00So um, there will probably be others. And if someone had radiation, they would also potentially have a radiation oncologist. Correct.
SPEAKER_01And then I think I have a breast navigator that's already staff. Yeah, and she is an angel, and I do everything that I can for her to make her job easier because I think her job sucks. She has to call people and give them bad news every day. And I'm like, gosh, I don't think I could have a job where I could give somebody bad news every day. I think it would be terrible. So like I took her a whole, like, I took her a box of like a hundred stress balls that she could give to her patients when they're having like procedures. And um, she sent books to my Sparkle squad to my like book, um, my book drive, which was so cool. Um, so she and she like calls me and checks in with me. And um, I wanted a referral to pink, um, to Pink Ribbon Good, which is like a breast cancer uh philanthropy that like does things for breast cancer survivors. And I didn't need meals or rides, but they do that. But I wanted a referral to some other like support groups, and um, so she did that work for me. So your breast navigator will like help you with your FMLA paperwork and she'll help you with like support groups and she'll help you with like anything that you might need, insurance things she was great about. Um, but your breast navigator is kind of like the person that you can go to. I used to just like show up in her office and be like, hi back. Yeah, yeah, can you do this thing for me? And she's always they're always happy to see you.
SPEAKER_00Yeah, they always want to see people kind of on the other side. And I'm guessing since she deals with that a lot, I mean, like we were gonna also mention that psychosocial support is so helpful and therapy. People may have therapists they're really comfortable with, but I'm guessing there's therapists that deal specifically with cancer diagnosis and survivorship.
SPEAKER_01Yes. And it's sometimes hard. I think you have to have the right therapist because people might look at me and be like, oh, you're so lucky. You only had to XYZ. And I'm like, I don't see it that way at all. Like it was just as catastrophic for me to get breast cancer at 49 and have to have a mastectomy as it would have been for me to get breast cancer at 56 and had to have had chemo and radiation. I think it would have been equally as devastating either way. So I think you have to like make sure that if you're doing therapy or you're doing support groups and let like it's the message that I give everybody is that any cancer diagnosis is devastating, despite what you did or didn't have to do for treatment.
SPEAKER_00Yeah, yeah. And I think, you know, that's true of so many things in life of like I've heard people say that finding a therapist is like trying on a pair of jeans. Sometimes it takes you several to find the right fit. I'm gonna guess that's probably true in this situation.
SPEAKER_01Yeah, and for me, it was more it's like it's there, and everybody has different issues, right? I am doing a great job because I'm in healthcare of navigating healthcare things. I hate it. I hate that I've paid my out of pocket limit twice and I'm getting ready to pay it a third time. But um, I can navigate those things because of the experiences that I haven't liked. But like the body dysmorphia, I was not prepared for. And uh like I think there are so many women out there that probably resonate with the idea that we all have some sort of body dysmorphia because it's how we grew up, right? And then you like chop off a piece of your body that makes you distinctly feminine, and then you're like, oh, well, now what? And so interestingly enough, I did not feel that way at all when I lost my uterus. I was just like, it can go. Like, I'm done with you. I felt not one thing about that, like that, because inward, like nobody would know if I have a uterus or not, right? But people know whether you're breast or not.
SPEAKER_00Yeah, but for someone else, it could be completely different, right? That's the big takeaway that I'm hearing is like for someone else losing their uterus because of uterine cancer or endometrial cancer or you know, something cervical cancer, that could be devastating to me. Correct, correct.
SPEAKER_01So it's such a continuum of things, but um, so basically, like this whole big team of people is like doing everything that they can. I'm also seeing somebody with about my scars. I'm gonna have 3D nipple tattoos. So I'm seeing somebody for that. So I'm just like really navigating so many people.
SPEAKER_00Yeah, I think that you know, one of the major current trends is understanding how great cancer survival rates are and how well cancer is being treated, and understanding that like the five-year survival for all cancers is over 70% now, and that's amazing. And that means people are living with you know post-cancer really long term. And you mentioned the other day your chronic illness medication box, and that really is how cancer is being treated, it's like a chronic illness now for so many people that it's long-term management of all of the things.
SPEAKER_01I tease, but it's a little because it's a little protective. Like I'm like, I carry around my chronic disease bag, and it's got like all my meds in it and all my supplements, and then things to counteract the meds that I'm on. And like, what what do I need that's like I I mean, I've got like ibuprofen, gabapent and zofran, pretty much like on hand all the time because I'm like, I never know when I'm gonna not feel well.
SPEAKER_03Yeah.
SPEAKER_01Um, but then my handful of meds that I take every day. And what the most insane thing in my house right now is that when like five years ago, my husband was taking like prescription medication every day, and I was taking like maybe a vitamin, right? And now, like post like surgery for him and like some lifestyle changes, and then cancer for me, like we've totally switched roles. Like now I'm the one taking like handfuls of medication every day, and he's like taking nothing but a supplement.
SPEAKER_00Yeah.
Long Term Meds And Menopause
SPEAKER_00So I think that there's a fair amount of side effects when people have to take some medications um long term after their cancer diagnosis. And this might be a good transition to talk about some of those things, especially related to breast cancer, is that some people have to take aromatase inhibitors and some people have to take CERMS, which are selective estrogen receptor modulators. And maybe we should talk a little bit about that and what it means for their health.
SPEAKER_01So the biggest thing with CERMS and AIs is like premenopausal, post-menopausal. But I also want to say that like all of these things are like subject to whoever you are as an individual, right? Because I know postmenopausal people who've done one or the other. Generally, what we say is you take a CERM if you're pre-menopausal and you have breast cancer, that's estrogen and progesterone positive. And you take an aromatase inhibitor if you are postmenopausal and you have ER, PR positive breast cancer. So the thing about it is that if you have estrogen and progesterone positive breast cancer, it basically means that your breast cancer is fed by the hormones in your body. And so you have to stop that. So when we talk about the endocrine systems, so those of you who are have been listening for a long time, go back and listen to our stuff about the HPO axis, right? Um, you have to stop that. And in pre-menopausal women, there's so many steps of that. They need to do likely lupron, which will like put them into chemical menopause right away, right? Which is a GNRH agonist, and then they take CERMS. Or in order to avoid lupron, they can have an oophorectomy. And so that will instantly also put them into menopause. That gets rid of the estrogen and the progesterone that comes from the ovaries. For me, I found out I was menopausal literally like in September, my labs kind of like dropped off, and my um OB was like, Oh, I think you're probably menopausal now. And then I found out I had breast cancer like a couple of months later. So I didn't have to do any of the yucky yakky stuff like lupron. Um, and I didn't have to get rid of my ovaries and have a second surgery, but I am taking aromatase inhibitors now for that suppression of any like residual estrogen or progesterone. Now with that said, you and I have talked a lot about what menopause and perimenopause looks for both of us. I feel like I am going gently into that good night. I don't have a lot of, I didn't have a lot of menopausal symptoms over last summer when my ovaries were decided to like, you know, take a hike. So I don't have hot flashes. I I might have a night sweat like once a month where I wake up and I'm like, I'm so hot, I have to take all these clothes off. Um, I don't have any more mood irregularities than I already did or any kind of like a moody person, but they didn't get worse. The only thing for me that I have noticed is the brain fog. And that was just like normal menopause. And sometimes for those of you who are moms, is it brain fog or is it mental load? Yeah, I do think the brain fog is different. Um I a lot of people, I have a I have a hard time distinguishing the two because I think sometimes my brain fog is just that I have a huge mental load of being a mom.
SPEAKER_00And the joint aches and the itchy dry skin and all of the different things.
SPEAKER_01Like as a like as a pre-cancer perimenopause, menopause girl, I didn't have any of that stuff. Like I feel like I'm so lucky that I had none of those things. Um, where you're like, you have a whole lot of different things. Yeah, yeah. And nobody talked about it. Like, no, our moms did not talk about it. Yeah, nobody told us the things. My mom doesn't even remember now. And I'm like, what do you mean you don't want to do it? It wasn't that long ago. But I also want to say to her, if it was as mild as it was for me, then maybe she doesn't remember.
SPEAKER_00It wasn't like a monumental change in her life.
SPEAKER_01Correct. And then some people have bleeding abnormalities. I had a hysterectomy in 2019 for prolapse. So I don't even know what my bleeding would have been doing because I haven't had a uterus for six years. Right. So those things for me, I feel like ease, but my premenopausal friends who have had to do lupron or have had ophorectomies and have gone through like this very terrible, like all of the sudden chemical menopause. It's been terrible. Yeah. Yeah. Now I take aromatase inhibitors that like tamp down that little tiny bit of estrogen that my ovaries were trying to squeak out. It was like just enough. They're like, here's some estrogen for one day of the 365 days, but now you're not allowed to have that either. Yeah. Yeah. I do feel brain foggy. And I I forget things probably more frequently than I used to. Um I am also profoundly tired. Yeah. And people who know me know that that is not me. Like I will just go until I drop, and that's just my personality. But now I'm just like I am slow.
SPEAKER_00You have been in bed. Um we are at the beach and you have been in bed early for you, I feel like. Oh yeah. Like I've been no later than like like 9:30 or 10 o'clock. I was gonna say 10 o'clock the other night, and you were kind of slurring words before that.
SPEAKER_01Yeah. And the kids now, because my kids are now teenagers, right? Everybody, the youngest child in my house is 14. I go to bed before the kids. Yeah. And they come say goodnight to me versus me saying goodnight to them. The rules have reversed. But the aromatase inhibitors certainly, I think, have made me more tired. I think I have more brain fog. And I can imagine if I'm feeling that way and really wasn't having symptomatic menopause, what that feels like for other people.
SPEAKER_00Let
How AIs And SERMs Work
SPEAKER_00me explain a little bit about aromatase inhibitors and then also CERMS, just so that um, especially our learners have a little bit more of an idea. I've learned a lot through this process as well in thinking about this. But after menopause and the ovaries stop making estrogen, there is still some small amounts of estrogen in fat and muscle tissue. And so that while your ovaries may be throwing out a piece of estrogen every so often, also our fat and muscles have a little bit of estrogen. And there's this enzyme called aromatase, and it converts those hormones that are that our muscles and fat are sitting out as and other hormones like androgens, and it turns them into estrogen. And so aromatase inhibitors block that enzyme and then they starve the cells of that fuel. So an estrogen receptor-positive breast cancer, when we block that estrogen being converted, um, it doesn't get the fuel it needs to grow anymore. And CERMS or a selective estrogen receptor modulator works in a little bit different in that it doesn't just it doesn't stop the estrogen production. Instead, they sit in those estrogen receptors of the breast cells, kind of like a broken key and a lock, and they prevent the real estrogen from getting in. So CERMS are um you can have normal levels, it's just blocked at the cellular level in the breast. Where with AIs, you have dramatically lowered systemic estrogen levels because we've turned it off in converting it into estrogen. I think it's helpful to understand how those work. True. Yeah. So what are some names of some different aromatase inhibitors?
SPEAKER_01So I'm taking anastrazole. Okay. Um, which from what I understand from my medical oncologist is one that they kind of start with because it works so well.
SPEAKER_00Okay. Is that um similar to like prolia?
SPEAKER_01No. So prolea is for osteoporosis. So it's
SPEAKER_00Okay.
SPEAKER_01It is not an aromatase.
SPEAKER_00But that's because aromatase inhibitors can also cause bone loss. Yes. Okay.
SPEAKER_01Six to seven percent decrease in bone density when you're on an aromatase inhibitor. And that should make sense based on what she just said. Yeah. You need estrogen and progesterone to maintain your bones. Yes. When you get menopausal, you likely get more osteoporotic. This medication is putting you in a menopause. You're losing your estrogen and progesterone. So they say about between six and seven percent of a decrease in bone density by being on an aromatase inhibitor.
SPEAKER_00Okay, that makes sense because it's blocking that estrogen conversion. And CERMS could help protect the bones a little bit more because it's only block brought blocking it at the breast because it's selective. Right. Okay.
SPEAKER_01And CERMS, then that's why we use those for pre-menopausal women, because they need, they're often younger, right? And they want to protect their bones a little bit more. I think of tamoxifen as kind of like the classic. Yeah. And that's the one that most people take. Yeah. Yeah. And you know, the back and forth between AIs and CERMS has more to me to do with like your clinical picture, right? Um again, I I say I talk about ER positive and PR positive cancers, but now we those are all on a scale as to whether you're not whether you're strong PR positive, moderate or weak PR positive, and the same for estrogen and the same for HER2. And so it's like a sliding scale. And sometimes some of these drugs work differently depending where on the scale you are. Yeah. Um, I think both of my ER and PRs were like right in the middle, like moderate ER positive, PR positive. And my HER2 was moderate as well. It wasn't strong. Yeah. Um, and so those are things to the oncologists look at when they decide what kinds of drugs they want you to be on and what will work better for your particular like situation of your receptors.
SPEAKER_00And then you'll hear people that are triple negative, and that's actually a pretty aggressive cancer.
SPEAKER_01So triple negatives are bad because they're really hard to treat. Yeah. So triple negative means they're PR positive, ER positive, and HER2 negative. Or ER negative, PR negative, and HER2 negative. And it's very aggressive. And it's very hard, it's hard to treat. Those people end up having lots of rounds of chemo, usually radiation, usually surgery. Yeah. Um, they usually lose their reproductive organs because they they they can't keep them, but you can't treat them in the normal ways because it's they're really hard to target.
SPEAKER_00Yeah. And all of this is different than like the genetic markers, like BRCA1 or two. And then you also mentioned waiting to find out about chemo. That was like an oncogene score or an onco score.
SPEAKER_01Yeah. And they don't do that immediately. Yeah. So what I had, they they take so I've learned so much, but they take your breast samples and they they take your tumor and they put it away for five years. And in five years, they pull that bad boy out again and they do some testing on it, and they decide, oh, well, maybe you need to do five more years of AIs or CERMS. So the the idea with AIs or CERMs is that you do it for five years, they reassess you may need it for 10. Parent pre-menopausal women sometimes need it much longer, but in my situation. But they had my tumor sitting somewhere, and then they had to send pieces of that, slides of that, for onco scoring. And onco scoring tells you whether or not like you are in a risk category for reoccurrence that chemo might be effective. And I'm right in the middle. Like 25 is sort of like the you should probably take chemo. Um, and I'm at 14. And so does it mean my risk of recurrence is zero?
unknownNo.
SPEAKER_01It just means that I am low enough on their nomogram that I don't need chemo now.
SPEAKER_00Yeah. I had another friend probably 10 years ago that was very similar. And I remember waiting on her onko score, and it was such a relief when she didn't need chemo as well.
SPEAKER_01Waiting and waiting. It is a waiting and waiting and waiting. So I think the next thing we should probably talk about is like this bone
Bone Loss DEXA And Treatment
SPEAKER_01loss thing. Yeah. Because if you haven't met me, I am five, seven and a half and weigh like 135 pounds, and my BMI is like 21. And my grandmother looks just like me, except she's a little shorter and she's tiny, and she for a long time was on phosmax for osteoporosis. Now, has she had a mammogram? Like, has she been to see a gynecologist in since she had a baby 70 years ago? Probably not. But um, she did have a DEXA scan. She was on aromatic or she was on phosmax, which is a biphosphonate, um, for her um osteoporosis. Genetics and family history play into osteoporosis so much, but you wouldn't think outside of how I'm built and my BMI, that I would really be at risk for osteoporosis because like I was a runner, I lifted heavy, heavy weights for multiple years. Like I've been very active through my life. I do a ton of yoga, I do a ton of weight-bearing exercise. Um, just since we've been at the beach, I think we've walked like 15 or 16 miles. Um, but I have osteoporosis and my hip is fine and my femur is fine, but my um, my score in my spine was like negative 2.5. And so I then had because I had to have a DEXA scan, because of I'm being on aromatase inhibitors, now I had to be treated for my bone health because, like I was saying, six to seven percent decrease in bone density because of um being on these kinds of drugs.
SPEAKER_00Yeah. And so with that, how often will you be scanned with a DEXA? Like only every two years. Okay. I was gonna say, I saw it could be every one to two years, but I was wondering.
SPEAKER_01Yeah, I asked that, and he was like, unless something happens, like you have a fracture, okay, there's no reason to do it for two years. So I will tell you, as a like a practicing midwife and our listeners as midwives, like, bifos minutes are terrible. They are terrible. They you have to take them once a week. You have to take them sitting up, you can't take them with anything else. You have to take them first thing in the morning. The that part, like the administration part, is just a pain. Right. But the side effects are terrible.
SPEAKER_00Yeah. And we hear about like catastrophic side effects like jaw necrosis, which sounds terrible, but you're saying just like the side effects that you experienced like almost immediately, like GI upset was terrible.
SPEAKER_01Oh, yeah. So we think of biphosphenids as bone glue, right? They are the ones that like um they like bind to the bone surface, right? And they inhibit and oscill, they inhibit osteoclasts, which is what breaks down bone, right? But I had terrible GI symptoms. I had such terrible GI symptoms that I literally was like, it was like having dumping syndrome. Yeah, I literally had the most profound GI distress and like diarrhea for like the first three weeks that I took it.
SPEAKER_00Yeah. But there are, so that was the pill that you take daily, is that right, or weekly? Uh weekly. Weekly. But there are some other bisphosphonates that are infusions and they may not have the same side effects.
SPEAKER_01Yeah. So you can do Zometa, which is IV infusion. It's every six months. You go to the infusion center, they start an IV, they give you an infusion, it takes like 15 minutes. It's no big deal. Yeah. Um, I had to fail, according to my insurance company, because I love it when insurance companies make decisions about what you need based on like you just have to try this thing first because it's the cheapest thing that there is.
SPEAKER_03Yeah.
SPEAKER_01Um, I had to fail Fossamax before they could do something different for me. So I'm doing prolea.
SPEAKER_00Okay.
SPEAKER_01And so um prolia is a ligand inhibitor. And I get I go to the infusion center and I get a shot every six months. Um, and so it also inhibits the um enzymes that break bone down.
SPEAKER_00Okay.
SPEAKER_01And so they say if you're gonna feel bad, you'll feel really terrible for about the first 24 hours and then be fine for the next six months and no untoward side effects. I felt fine.
SPEAKER_00Interesting. And so um, I did read about Crolea that like if you stop it, um, the bone density can drop really, really fast. So it works well at protecting bone. Yeah. Um, but it could drop off suddenly if you stop it.
SPEAKER_01The bone necrosis, the jaw necrosis thing is actually really bizarre to me too. Like, I have only actually heard of one person that I know who's on a biphosphonate who had bone by jaw necrosis. And it was like an older person. Yeah, she was like 85 and had bone necrosis.
SPEAKER_00I feel like it's always a test question kind of thing to watch for, but I've actually not ever known anybody that has one person, it's somebody that my grandmother knew, and she was like, She had this terrible jaw thing.
SPEAKER_01And I was like, Yeah, that's because of her biphosphonate.
SPEAKER_00But people can feel pretty, pretty yucky with these meds as well.
SPEAKER_01Yeah, I also take calcium and vitamin D. Awesome. Um prescription. Like my oncologist is like, no, you can't order it from Amazon. Like, I will call it to the pharmacy. And so we have not done a really great podcast on like vitamins and minerals and those kinds of things. But you know, you want your vitamins to be pretty well regulated. You want to know what you're actually taking. Yeah. And so that's why he's like, absolutely not. You'll take the calcium and the vitamin D that comes from the pharmacy.
SPEAKER_00I'm real fond of my Amazon fiber chews, but that's a little bit different than like calcium and vitamin D for your bones. That you have to have because you have fear of like post breast cancer. Osteoporosis.
SPEAKER_01Correct. Yeah. Also, I mean, there are certain companies that have like the seal, like the USDA. They've been, they you know you're getting exactly what you're getting, but he was like, no. And I, it's about 1200 uh milligrams of calcium, and I think it's 800 of D3, and it's all in one pill.
SPEAKER_00Okay. Before
Vaginal Atrophy And Topical Estrogen
SPEAKER_00we jump, because you mentioned a little bit about lymphatics, I want to mention because one of the other things that a lot of women have with taking the aromatase inhibitors and the CERMS and so forth, is that they can have vaginal atrophy or genito-urinary syndrome of menopause. And there's been some changes recently about how we feel about treating that with estrogen.
SPEAKER_01Yeah. You and I say all the time that your vagina is a use it or lose it organ. True. And I use mine.
SPEAKER_00Yes. And you and I both also all the time say that we like a medication being used where it's needed. Correct.
SPEAKER_01So, first off, I have not had any of these experiences because I use my vagina on the regs. Um, I just seriously, like, I say this to patients all the time. I'm like, they're they come in and they complain of dysphorenia. And I'm like, well, how often are you having intercourse? And they're like, well, like once every five months. And I'm like, that's why your vagina hurts.
SPEAKER_00Like, yeah, I mean, they didn't cause it, but they didn't help it.
SPEAKER_01But they didn't help it. Yeah. Right. And you know, and a little bit of well-placed estrogen in a vagina works wonders. And so that's what you're talking about with like the new recommendations, which is yes, we can even when people have breast cancer, even if it's ERPR positive, you can now use like topical estrogens.
SPEAKER_00Yeah. We should consult with the oncology team, but in general, we think that topical estrogen vaginally is really, really helpful. It's not just for the vagina, it also helps with decreasing UTIs. It helps with urinary incontinence. It's the whole genitourinary syndrome that it can really, really impact, which is great.
SPEAKER_01Yeah. I mean, I will say I I think I had more urethral atrophy like a few years ago than really like my vagina. My urethra, it it you would think like, oh, am I getting a UTI? But your bladder didn't hurt, it didn't hurt to pee. It just was like literally at the urethra. And I was like, Oh, this is what urethral atrophy feels like. Yeah. Um, you should not think about having a urethra or a vagina. Or a vagina on the rugs. Dr. Johnson, my oncologist, is like, yeah, if you need it, we'll do it. Yeah. He's like, he is like a walking encyclopedia. Like, if I ask him something and I'll say, like, I'll start off a bunch of statistics, and he's like, This is why I love you as a patient. You already know the answers, but you're just testing me. I'm like, I'm not testing you. So when you're opinion, I want you to tell me if there's anything that I missed in the things that I already know. Yeah. And so um, I am a well-informed patient because of what I do for a living.
SPEAKER_00Yeah.
Lymphedema Signs And Lymph Therapy
SPEAKER_00So I think one of the most interesting things that I've learned in this journey, um, walking alongside you and watching is learning about lymphatics. And so I want you to talk a little bit about that. Lymphatics are so cool.
SPEAKER_01Okay, this is the number one thing Kara has learned in Missy's breast cancer journey. Um, is that not every single human body has the same number of lymph nodes in the same number of places.
SPEAKER_00And that it doesn't matter if they take one single node in your surgery or they take several, you can have lymph impact from just a single node.
SPEAKER_01Yes. And the reason the way she described it to me is like, I may have six nodes under my left arm, and I, you may have 20. And if they take one of my six, that impact is going to be more than they take if they take one of your 20. Right. Or like I have friends who've had 10 nodes taken out and they don't have any problem, but they had a ton of lymph under their arm. And so we all have lymph nodes in the same kinds of places. That's how our body is designed, right? And our groin underneath of our arms and our necks, etc. But the number of lymph nodes that you have can vary. Yeah. It's not like I have two lungs, maybe you have four. Yeah. It's like this is literally like an anatomical variant that I had no idea existed.
SPEAKER_00Well, and the idea of so it can be as simple as like, we don't take blood pressures in the arm where they took a node. Yeah. Right. But then I'm curious like what you felt when you felt like something was off. Like, how could you tell that you needed to see this lymph specialist?
SPEAKER_01Okay, so those people who know me really well know I never take my wedding rings off. I sleep in them, I swim in them, I work out in them, I never take them off. And so my thing was I had to take them off for surgery. But literally, as soon as I came out of post op, Bob put them back on me. And so I've never taken them off through like recovery. I my rings were tight. And I hadn't gained significant weight. Like, in order for my rings to be really tight, I'd probably have to gain 25 pounds. Easy. And so my rings were tight. Um, or like I have bracelets that I like to wear on my left arm, like they might have been tight. And so that's where I really noticed that like I was puffy. And you noticed it pretty early from my recollection. Pretty early that I was. Oh, and then underneath my armpit, I had no feeling. And so this is the other thing that people are like, what do you mean you don't have any feeling? Like it is numb. My armpit is numb on both sides from my mastectomy and my reconstruction. So, but when I put my arms down, I don't have any like sensory feeling, but I can tell when something feels puffy. So, like underneath my armpits feels puffy, like just puffy.
SPEAKER_00So, and it's a special, it is a special lymphatic therapist that you see.
SPEAKER_01Yes. Okay. Her name is Tammy. She is literally like, I just want to like tuck her into my pocket and carry her around with me because she's so amazing. She's so sweet, but she's like just the nicest person. She's a physical therapist, okay, who's specifically, pacifically, that's what my kids used to say when they were little, pacifically, trained in lymphatics. So I asked her the other day, I was like, Do you do regular physical therapy? And she's like, like five percent of the time. And she says, and it's usually one of my lymphatic clients that doesn't come back that needs physical therapy. Yeah. Um, but lymphatic therapy is not massage. It's not like deep tissue massage, like we're not trying to like move things around. It's actually a really light touch thing where you're trying to just like encourage lymph to come back to where it's supposed to be. So when you get lymphedema, it's because the lymph like pulls in a place. So for me, it's my wrist and my hand. And when she does lymphatic drainage, it's this very soft stroke trying to get the lymph to like go back to where it belongs.
SPEAKER_00And is it like other physical therapy where you have exercises to do outside of your yeah?
SPEAKER_01My exercises are pretty easy. I'm like doing the chicken dance. Oh, okay. I'm doing the chicken dance, you know, like squawking with my fingers, moving my arms up and down, um, extending my fingers in and out. It's just things that are like encouraging movement from my lips. Okay. And then you flew the other day. Yeah, I flew the other day. So Tangmy put me in a glove like about six weeks ago. And sometimes I wear my glove, just my glove. It's literally doesn't have any fingers in it. It's like cut off at the finger and it goes down to my wrist because sometimes it's just my hand. But she's like, whenever you fly, I really want you to wear Job's sleeve. So I have a sleeve, it's high compression, so it's like 20 millimeters of mercury, like compression. And um, she's like, You're gonna be traveling a lot in the next few years. And I just think every time you get on an airplane, you should wear it.
SPEAKER_00Yeah. So if you see people with a sleeve on, it's oftentimes because they've had Lynx nose removed in their arm.
SPEAKER_01Yeah, and some people have to wear their sleeves all the time. She just is more concerned with me flying. So I've been working with her now like seven weeks. Next week will be eight. And we have gotten like several degrees. We went, I mean, I've added like 20 degrees in range of motion since I've been seeing her. Cording is a feeling that you feel underneath of your arm when you've got like lymph and or like scar tissue. So she uses lymphatic massage for cording. Um, and so I've gotten it's gotten better with her help. But when you think about like the lymph thing, like you have to understand that like when I had my mastectomy, like the drainage system of the limp underneath my arms was essentially like a cut. It's like having a water main break, right? And so you have to figure out your body has to figure out how to reroute the things that it needs to reroute. So instead of it going back to where it's supposed to go, it like pulls in places. Yeah. So um she does these really, this really nice soft massage, and we have a little conversation for like 45 minutes every day. And um yeah. So the myth of it is like you should never have needle sticks and blood pressures. It's not because they'll be inaccurate in that arm uh or in both arms, if you've had lymph nodes from both arms, it's that they don't want any insult to your arm that you would need to encourage lymph to go to. Gotcha. Okay. So um Tammy told me, be really careful with that arm. Like, I don't want you to like, if you injure it or you cut it or whatever, and literally that week I burned the palmar surface of my left hand with a with a lighter. And then the next week, my hand was so swollen I couldn't get my rings off.
SPEAKER_02Yeah.
SPEAKER_01And I was like, you told me not to hurt myself. And then I showed her this burn and she was like missy. And I was like, I know. Um, like even like she's like, when you're digging in your garden, you have to wear a glove on your left hand. Yeah. So now I've been putting like a like a surgical glove on my left hand and then putting it in my garden glove, uh-huh, like double double, double. Yeah, um, because she's like, if you get dirt under your nails and you have a cut underneath of your nail, like she's like, there's all kinds of bad things that can happen, just like because you don't have that same lymph system in your left arm. Yeah. And so we have been like, I now I'm like just super careful. And I said, How long do I not do those things in my left arm? She's like, Forever. And and I think that who you talk to, they may tell you different things, but it makes sense to me as to why I don't, I'm not gonna regrow that lymph node. And those pipes aren't gonna automatically like find like them, they're not gonna fix themselves. Yeah. And so I just have to be really careful with my left arm.
SPEAKER_00Is this a situation? Because I'm curious, um, is this a situation where you could potentially wear like a medicalert bracelet? Or if I mean, if you were unconscious and someone found you, it's not gonna hurt them to take your blood pressure or start an IV in that arm.
SPEAKER_01Yeah. Um, it'll be interesting when I have my so shoulder surgery coming up as to where they're gonna put my IV. Yeah because I'm having sort of the other side. Yeah. Yeah. Interesting. Um, but I think like, I mean, the lymph thing has been really like a learning thing for me in terms of um there's just things about that that I didn't know. Yeah. And I didn't think I would need lymphatics. And now that I'm seeing her, I'm like so happy that I am. Yeah. Um, I would just say that like anything that's available to you as a cancer survivor, you should dive into and like decide whether or not it's a thing for you. Like people keep asking all week, people have been asking me, like, are you gonna get new nipples? And I am, but I know lots of people who choose not to. Sure. Yeah. I know lots of people who choose to do other things across their chest. Yeah. Um I plan to live another 50 years and I think I want some nipples. Like I tease that. I kind of right now look like a Barbie.
SPEAKER_00Yeah. Right. Yeah. I think what I've learned in helping support several friends and thinking about this is that people are quick to judge about what other people's choices are when if you haven't been in that situation is really hard. And you can think you understand, but until you're really faced with those decisions yourself, you don't really know what you would do or what how you would handle things. And so I think just being really open-minded and supportive as much as you possibly can is really, really important and avoiding judgment.
How To Support Without Guessing
SPEAKER_01I also needed people to let me be mad. Like just let me be mad. I'm mad right now, let me be mad. And then I'm gonna probably get over being mad, but don't try to talk me down from being mad. Like right this second, these are big feelings that I'm having that even my husband couldn't understand. And him and I had some pretty heated conversations where I was like, look, I have this terrible body dysmorphia. I've had my breast amputated, I have to go see a lymphatics. I have an oncologist. Like, yeah, um, I'm gonna need you to either be mad with me or be quiet. Yeah. And he now is like, and he didn't ever take any of that like personally. I think he just knows me well enough. Like he took me to one appointment and he knew I was upset afterwards. So he just took me to the mall and was like, just go buy some things. Like go shop. We'll just not speak. Yeah, we'll be next to each other, yeah, and we'll like go places and then maybe we'll go eat something. And then and he knew like eight hours later, like the next morning, even he woke up and he's like, Are you feeling better? And I was like, Yes. And he was like, I knew what you needed before you even knew you needed it. And I was like, Yes, and I appreciate that. Yeah, but like I just don't like, I don't want to be talked out of like how I'm feeling. Yeah, because it's going to pass, but it's also like gonna take a second.
SPEAKER_00Well, and I think you know, just the changing like relationship dynamics and all of that, he also needs someone that can validate his feelings because how he's feeling is also valid, you know. Like, I think that's true in so many different things, but even just all of us recognizing that there are so many dynamics that change. You've talked about the body dysmorphia, even the like caring for children and other family, the if you're the strong one and you make all the decisions and then you need someone else to step in and make decisions, like that's a lot.
SPEAKER_01Um, or the one who cooks dinner every night and does a lot of the dishes and the grocery shopping. Like, my husband's great, he's an amazing cook. He he's capable of doing all those things. I just have was used to doing it. And sometimes you just have to like let it go. Yeah. My kids have really proven to be very resilient, even though they were very upset when they found out I had breast cancer, they have done a great job of rallying. Um, our brand of coping at our house is humor. And so there are cancer jokes all the time. And they wouldn't be funny to a lot of people. Yeah. Like, right. But we, I think as a family unit, have really done a pretty amazing job. And I think the other thing that's interesting in my family is everybody has a role, right? Like my baby sister's role is like she wants to know every everything so she can process it, right? Um, my middle sister is more like the like the what do you need? Like I like the softer, like she doesn't care as much about like all of the details about all the diagnosis things. She's just like, how's your heart? Right. And then, you know, and then like I at one point I needed people to just come in and take over. Yeah. Just come and do the things. Yeah. Like, I don't, don't ask me what I need. That is my number one tip for people who are supporting people who have cancer is we don't know what we need. Yeah. The most helpful things were like just show up with food. Don't ask me what I want, just show up. I'll eat it.
unknownYeah.
SPEAKER_01The mental load of making decisions. Before cancer, I did, or before I had surgery, I did make a list of like food preferences, which people did a great job of following. Yeah. But if you showed up with something that I didn't have to cook or that my family didn't have to cook, yeah, great. Yeah. Um, I had a friend who just was like, Can I just come sit at your house with you? Yeah. Yes. You can just come sit here. Yeah. I don't need anything. It'd just be great to if you bring greater's ice cream, we won't turn you away. Yes. If you brought ice cream, I won't turn you away. If you brought pizza, I also probably won't turn you away. Um, but I got a lot of really kind gifts. And it was never like, I just, I the fatigue of making decisions when people are like, what do you need? I don't know what I need. Yeah. But I did um have a friend who almost always was like, Do you need me to go to an appointment with you? Do you need me to drive you? And Bob was really great about just being like, I'm gonna do all those things.
SPEAKER_00Yeah. I think even when I came to Cincinnati, we had talked, and I'm like, I will come anytime. And you had been like, We're fine, we're fine, we're fine. And I'm like, I would really like to come and be there. And you're like, Bob would like some time off. Yes. And so it, if I had waited for you to say, Kara, will you please come? You may have never asked.
SPEAKER_01Well, right. And I think too, Bob had to do some traveling for work. And so that like it worked out that he didn't want me to be left alone.
SPEAKER_00Yeah. But I didn't want to intrude and be in the way. Right. But I needed to say, yeah, it will make me feel better if I can see you.
SPEAKER_01Yeah. Even like my yoga instructors were like, Missy, just come to the studio and just lay there. Yeah. So as soon as I was able to get myself on and off the floor, yeah, I would literally go to the yoga studio and just lay on the floor in the heat because it was so good for my mental health. Yeah. So I think find, figure something out. Oh, my friend Jill sent art supplies, which was so nice. Like it gave me something to do. Somebody sent puzzles, somebody sent Legos. When I really did start feeling more like myself, it was fun to be distracted with things like that. So I do want to say like a couple of other things, like as we get ready to wrap
Books That Name The Aftermath
SPEAKER_01this. And one of them is um there are a couple of books that I've read. People have sent me all kinds of things. And I think part of it is you have to like know your audience. Like I'm kind of snorky. I don't want a lot of like foo-foo, like optimal, like uh optimism. Like, I just tell me the straight thing. Yeah. Right. So the two books that I have loved the most was Um Cancer's Complicated, which is Clea Shearer. She is the home edit girl. She has very complicated breast cancer. Um, but reading her story about her diagnosis and all of her treatments was very normalizing for me. I'm glad I read it after I had my mastectomy. Um, and that's a great book if you're like supporting somebody who's also going through breast cancer. But I also just got in the mail, what the fuck just happened to me? And I have read it so much that I have like dog-aired pages and I've taken notes in the margins. And I like sometimes I just like throw it across the room and I'm like, oh my gosh, why didn't somebody just like say that to me? Right. Because I'm still, I I told Stephanie the other day when we were like texting back and forth. I was like, I still am like the WTAF, like happened in my life. And which is why I think it's really hard to like see myself as a survivor because I'm like, I still am like not like bare, not even six months out. Yeah. Where I'm like, I don't even know what happened in my life just now.
SPEAKER_00Yeah. Throw in there a shoulder injury that you need surgery for, and it'd be even more complicated.
SPEAKER_01Selling a house, yeah, like all the things. Yeah. And so feeling um like there's really not a finish line. Yeah. Or, or that the finish line just keeps moving. It keeps moving. Yeah. Um, my friend Amanda had breast cancer five years ago. Her literal like five-year date was a couple of months ago, and she got to stop taking her remedies inhibitors. And I was like, But how do you feel? And she's like, I'm that I don't have to take a pill every day. Yeah. But I still like, if I get a cold, is it because I is it, do I have a cold? Is there is is there some comfort in doing something to prevent it? Well, right, yeah. So and that's the same thing. Like, I was sitting out here the other day and I was like, I have bruises everywhere. Like, do I need to probably go like have a CBC and make sure my platelets are okay and then my weight count is okay? Because before I if I had bruises, I'd just be like, oh I run into things all the time. Um, but now I'm like, what is a symptom of something else?
SPEAKER_00I have seen you run into things three times this morning. So that could be it.
SPEAKER_01Yeah, it might be. Sometimes I run into things, but yeah, to the point where I like get bruises all the time. But I think like the finish line part is not really a thing. Like there's no place where I see a finish line in the future. Um, we're doing some celebratory things at the end of this year because we'll be at one year post-breast cancer diagnosis. And so that will feel good. Um someone's turning 50 this year, too. Yeah, somebody's turning 50. I don't know who. I don't know that old lady person, but no. Um, but I think you're always, I'm always gonna now live for however many years in the is something a symptom of something else? Um you hear a lot of people who like never have a reoccurrence, but then you also hear about all these people who do have reoccurrences. And you know, when they do a mastectomy, they do not take all your breast tissue. They can't. Because you don't have, they have to leave something there for your skin to heal. Yeah. So you keep like two to three percent of your breast tissue. Do you hope that you don't get breast cancer in that two to three percent of your breast tissue? Yes, yeah. Yeah. Um, so I think I'll always live in a state of what if. Yeah, I think. And I'll always live in a state of like maybe let waiting, but I think it'll probably get easier as the years go by. Yeah.
SPEAKER_00We'll see. Yeah. Well, I'm so appreciative for you sharing. I think it it helps to go from like clinical pathology and the idea of definitions to like really hearing what the lived experience is like.
SPEAKER_01Yeah. And I think talking about it too is always good therapy. And I can't wait to see Krista in October because like her and I are gonna like hash over all the things.
SPEAKER_00Yeah, she will have had her reconstruction by then too. I know it's so all right.
SPEAKER_01We also have
Summer Break And Listener Requests
SPEAKER_01an update.
SPEAKER_00We do.
SPEAKER_01It's been, as we have just shared, a crazy year. Yeah, it's been a crazy year, and so we're 13 seasons in, a hundred and thirty. Yeah, Taylor says 13 is a thing. So we're gonna go with our best Taylor Smith vibes, and we're gonna take the summer off.
SPEAKER_00We are, we are. It's there's a lot going on, lots of good, happy changes, lots of busyness, um celebrating big birthdays and milestones and all the things and graduations of both of your kids, you know, big trips, all of it. And we are gonna take the summer off.
SPEAKER_01We're gonna take a little break. And then maybe we're gonna see you for season 14 at the beginning of next school year.
SPEAKER_00Yeah, I was gonna say, let's think of it as an academic year.
SPEAKER_01Maybe that's a good way to frame this. We'll do, we'll podcast during the academic year and take the summer off.
SPEAKER_00We're gonna take the summer off.
SPEAKER_01That sounds like a very uh tenured professor thing to do.
SPEAKER_00Yeah, yeah. I'm kind of excited for a little bit of a break. I know I love these conversations. We love hearing from people, but this is a great time that if you want to send us ideas, we would love to know what you want to hear about. We want to see you in Kansas City in October for the annual meeting. And we're here for you if you need us.
SPEAKER_01Yeah. So thanks for joining us for the Engaged Midwife podcast. Take care. Can't wait to talk to you again.
SPEAKER_00Take care.