A Diary Entry about Recurrence Scares

A Breast Cancer Diary

This episode is an update from my personal story. I had a recurrence scare in November/Dec/January of 2024 and 2025, and this is the way it's sorting itself out. Always something to learn! --Kathleen

Transcript:

Welcome back to season two. Today's episode is episode three of this new season. And as promised last week, I will just be talking about my own story this week. I had a recent recurrence scare and I think it's resolving nicely. It's kind of an interesting non ending that I'm at right now. I really thought that it would be all understood by now, but it's still a little bit of a mystery.

But, um, at least my pathology came back okay, so that's good. And I, uh, Wanted to share this, not because I think it's so interesting or profound, but because I think it's good. You hear a lot of stories of recurrence that don't end well or that end with cancer, and you don't hear a lot of stories of recurrence scares that do end well.

And I think a lot of us keep our recurrence possibilities really silent because we don't want to worry people, and that's a really good intention and probably a good plan, but When we do keep them completely to ourselves, it can really eat away at us. And so I want to encourage people to tell their stories and be open and willing to upset people or worry people.

It's been really hard for me to do so. So I'm not saying it's easy, but I just want to set that example for anyone else out there that struggles with this. I know a lot of us have quite a few recurrent scares in our journey. So it's unfortunately something that happens pretty often for a lot of us.

So I'll tell my story briefly. Started in early November. I had a little lump about half the size of a dime and maybe two times as tall as a dime on my chest right in the center and thankfully it was in a really easily identifiable spot because I had still have a floral tattoo on my chest, and it was right in the center of one of the roses on my chest.

And so I went to see my oncologist. I actually happened to already have an appointment with her set up, so I didn't have to scramble to set one up. And it actually was still there when I got there, and she felt it too. And as the days passed, uh, through mid November, it got a little more tender, a little bit more painful to the touch.

And then suddenly, one day, it was gone. And she did order an ultrasound, but that ultrasound took many weeks to set up. I won't go into all the reasons why, but, uh, it was quite delayed. And before I even got to that ultrasound that she ordered, STAT, in early November, I was ordered an MRI from months prior, just on a regular schedule, to do an every other year MRI for surveillance.

because I still have a little bit of breast tissue, um, possible in my Goldilocks mastectomy side. And so I'm eligible for an every other year MRI, which is nice because I really like the idea of doing surveillance as much as I can. So that came up actually before the ultrasound. I did finally get the ultrasound set up for mid December.

Um, but, um, The MRI came up beforehand and it was in the first week of December and by that time, the lump had completely disappeared. I had no thought of it. I actually never really got worried about it because I've had so many little false alarms on my chest. I've had little bumps and lumps and, um, cysts and, like, Just tiny little skin things that are irritating.

I've just gotten used to having those. I've never had them ever before breast cancer, but I think it's pretty common to have them after. And so I've had so many false alarms that I've just been kind of numbed to them. And so I wasn't worried about it, didn't think a thing of it. I thought I had completely resolved until I got the call from the MRI.

um, assistant, the radiologist assistant saying that there was something on my MRI and they wanted me to come in for an ultrasound. So I said, well, I already have an ultrasound set up. So that's perfect. I don't even have to wait this time. So um, I did have that, assistant person who called me, read me the orders from the radiologist because I knew it would be really hard to get access to that.

And I knew I'd be worried about that. And so that's something I'm really glad that I did. Unfortunately, she didn't read me the whole thing. She summarized it in her own words and got it way wrong. And so, which is a good thing. In the end, it was a blessing because I was a lot less worried. Um, there were actually two areas of concern on that MRI.

One was in my chest wall and one was in a lymph node. So as soon as I heard from her about this, I went and felt for my lymph node, and I felt it right away. It was like the same tender kind of lump that I had felt in my chest, the same feeling had kind of migrated into my underarm. And from then on I felt it just about every day just to kind of keep track of it.

And Pretty soon after that, I did have the ultrasound just a few days later, and so that was good. The radiologist that I go to for my ultrasounds now, is not a part of my hospital system. She has her own private clinic, so she runs her own radiology clinic and imaging center. And so, um, she always does this, which is amazing, but she offered to just go ahead and biopsy.

it with a needle right on the spot, um, because she did see concern. She did, uh, rate it as a BI RADS 4, which is suspicious. She called it a lymph node. She said she would do a little needle biopsy, and I said, No, I really want to wait, talk to my oncologist. I don't want to jump into anything. I think I might want to have the whole lymph node out.

Mostly because I, I've had a history of lobular breast cancer and I know that needles can miss that in biopsies. Um, and then later on I was thinking about it and I thought, oh, I know another reason why I said no. It's because I have a reaction to titanium and I knew she'd leave a titanium clip in,

as a marker, and that would have been a really stressful decision for me on the spot. So it's really good that I had time to think about it. I had time to email back and forth with my oncologist who was on leave at that time. She was on vacation, but she was great at responding to my emails and I decided to have Or to try to have a surgical biopsy, which means you take the whole lymph node out as a whole with an incision, um, small surgery.

And I couldn't find, at first I couldn't find a surgeon that would do that. I talked to one surgeon and her staff and she said no. And then the second surgeon I talked to was my actual first breast cancer surgeon. She had done my first mastectomy and she said yes. So we scheduled it, it was just a week later, it was a week ago.

And a week and two days, a week and three or four days ago from now. And I had to go under anesthesia and it was just really clear. She said she remembered where it was. She didn't even like feel for it to see where it was. She just drew a little line on the edge of my, where my chest meets my underarm.

And she did the incision. And at the end of my surgery she told my husband, I think I got it. I didn't see it, but all I saw was scar tissue, so I wouldn't have seen it. Um, but I believe it was inside. What I did get had to wait a week for pathology and just a couple days ago Pathology came back. I Went in to see her.

I had scheduled an appointment to go over pathology and just before I went in to see her I did peek at my chart, which I am NOT Now, I am regretting that. I'm not thinking that was a good decision and I think in the future I will try really hard not to look at my chart to find my pathology report before sitting in a room with a professional because what it said was no lymphoid tissue detected.

So basically it said nope. We didn't get the lymph node and I was flipping out. I was like, Oh no, I just went through all this surgery. I didn't anesthesia, all this recovery, you know, everything all for the sake of not getting a single thing. We missed it. It's still in there. I showed up to her office just a couple hours later and with that attitude of like, Oh, Dang, let's get an ultrasound and make sure it's still in there.

And she said, Oh, we can't have an ultrasound. Um, you're all inflamed from the surgery. You'll be inflamed for at least a couple months. We'll do it in about three months. And I was like, I can't wait three months to find out if this thing is still in me.

Can you do it a little sooner than that?

She said, yeah, she could do it in two months, but no sooner than two months. So I was like, Oh man. And she said, I really don't think that it's still in there. I think it never was. There never was a lymph node in there. And at first I was like, I mean, It was in there and then it just went away right before surgery because I felt it in there.

And she was like, no, I think it was maybe something else that looked a lot like a lymph node. And, um, just was really, really convincingly looking like a lymph node on both the MRI and ultrasound. And I said, well, all they found was fat and scar tissue on the pathology report. So how could those things be?

And then I showed her my latest ultrasound. which had just happened less than a week prior to surgery. It was just three days prior and it said that I had blood flow detected to the lymph node that they were supposed to take out. And I was like, there's no blood flow. That goes to fat or scar tissue.

Like that doesn't make sense, right? Like, and she couldn't really answer that, but I came out of her office feeling really, really confused. Like my head was just spinning and I knew I should be grateful that pathology said it was benign tissue. There was no cancer. That's the result that I was desperately wanting.

But I, the fact that I couldn't understand the story and the narrative, I couldn't put it together. It was another puzzle that I couldn't solve, was really frustrating to me and I'm sure it would've been to anyone. And so that's kind of where I'm at now. Um, it wasn't as black and white as I thought it would be.

For the first 24 hours after my meeting with her, I was thinking, I'm pretty sure there's still a lymph node in me and we're gonna find it in two months. Um. Then, you know, I went to bed and woke up the next morning and thought, you know, maybe she's right. Maybe there's some other explanation. I need to keep learning.

I need to keep asking people who would know. So my oncologist might know. I'll talk to her about it. I have an appointment with her next week. Talk to other breast cancer survivors. Maybe they've had this weird situation where they had something that looked like a lymph node inside of them. And uh, One of the things I really started to do was kind of blame myself for not getting that titanium marker, which is kind of the protocol for these situations.

You want to mark the lymph node before you take it out. And yet this surgeon had said she didn't need a marker. I was willing to get one when I went in with her, as long as she was willing to also take out the whole lymph node along with the marker. She said she wouldn't even need a marker. That was really reassuring to me at the time, but then I thought, oh man, how stupid was I if I'd only had a titanium marker put in?

I would know if there was still a lymph node in me or not. It would be really clear that either what they took out with the marker was not a lymph node and we thought it was, or they didn't get the marker, so they didn't get the lymph node. Very black and white. This is kind of kicking myself and really appreciating the wisdom of protocol, but Over the days, the last few days, I've had more insight and I think now I'm realizing that I can create the narrative for myself.

I don't know what's true, I may never know what's true, that may really drive me crazy but I can create a narrative of what is the most plausible, the most likely situation in light of the fact that I have a strong body that has incredibly strong markers right now. I'm not. having like high cancer markers or anything like that.

All my inflammation markers have been low prior to surgery. So I have every reason to think that my immune system is strong, my body is strong, and my body is able to fight off anything that would be concerning. So worst case scenario is there was a lymph node that was concerning and it was starting to build a blood supply and that would have been really worth worrying about. Maybe when it started to build the blood supply and my body started to detect what was going on, my immune system came in and zapped it and it was all just necrotic tissue and it just showed up on the pathology report as necrosis and fatty necrosis because it was just that. that my body had killed the lymph node, and it was no longer recognizable as a lymph node.

I don't know if that's even possible, but I definitely will run it by my oncologist. But that's the narrative that I'm going to tell myself, because I can. And because I have nothing else that is Conclusively true, that I can tell myself. Uh, which is so often the case in these situations. You don't get the black and the white, you get the gray.

You get more complexity instead of more simplicity. And that can be frustrating. So that's kind of where I'm at now. I'm still kind of wondering if there's a lymph node in there. I can feel without pain and kind of feel around and I don't feel a lump anymore. So that's part of the reason why I'm thinking maybe it's not.

It is really confusing to think about that. Last ultrasound report saying that there was some blood flow and I would like to talk to my radiologist and I'll get to when I get that next ultrasound. So I will get to pick her brain about that as well, which will be really good. So I'm very fortunate I have access to all the people that have all the information.

Just need a little, wait a little while and get that information. Um, and just be patient. And then I'll maybe have an even more convincing narrative to tell myself. But I just realized, like, this time around, you know, in my mastectomy experience, I had this little journal. It was like a little travel journal that fits in your purse.

And I used that to note all the facts and diagnoses and terms and research that was important to me and my journey and decision making. But I didn't write a narrative in it. I didn't, Tell my story and this time I have a bigger travel journal and I'm calling it my surveillance journal for the rest of my life after the initial occurrence and I'm gonna write in there all the facts and dates and figures and you know diagnoses and terms But I'm also gonna write the story.

I'm gonna write it in my own words I'm gonna write what I believed and what I told myself Um, because I think that is even more important than keeping track of what happened in a clinical sense and a literal biological sense is what did we tell ourselves about what happened? How did it feel? What did I notice?

What were the things that were standing out to me? Because my intuition is the most important intuition in the room and my story matters. Even if it doesn't make the doctors do things differently. In this case, it actually did. My story and my desire to have a whole lymph node dissection through surgery was actually granted.

And that's another part of the story that I'm really glad for because I was heard and people took me seriously and, um, they did things a little out of the ordinary because of my story, because my story mattered to me. So that's something I brought out of this kind of flustering, confusing, um, recurrence scare besides the fact that I'm just grateful that I am a well individual now.

I am not sick as I feared that I would be. And then I've also been kind of struggling with The idea of when these things happen, it's so freaking awkward to like think about who I want to include on my updates every week when I get new information. And I hate putting that email list together. And so this time instead of just assuming that my closest friends and family wanted to be on an update list and putting an email together and forcing it on them like I did in my mastectomy, which I think is pretty fair, This is not a mastectomy, it's a little less intense.

So what I did is I waited for people to hear my story in person from me. And then if they said, keep me updated, I'd say, would you mind if I put you on an email list because I will forget to individually check in with you. There's too many people that want to be updated and I know I'll forget someone.

So if you don't mind, I'll just stick you on that email list and I'm going to write an email update. And they'd always be fine with that. So, over the weeks between November and January, while all this was happening, I added people to that email list. And yet, I still felt a little bit, like, overly verbose, overly worrying them, maybe not having permission to give them all the nitty gritty details.

And so, I've decided that in the future, another approach that I'm going to take is, I'm going to do, like, it's called a Caring Bridge blog it's like a, an online, a free online resource for people who are sick, who just write what's going on with them. And the people who really care, who really do want to know, will either subscribe to that and get a notification each time a new thing is written, or they can just check in when they get worried about that person.

And maybe they won't get worried about that person until they die. But. My insight recently was my friend died. She was down in San Francisco. I was going down to San Francisco. I told her I'm coming. I'm gonna come see you. It doesn't matter if you're sick. She had metastatic cancer. It wasn't breast cancer.

Um, and, and then my email or my text messages started to not getting replies. So like right when I left to go down there, I didn't hear back from her. And then I didn't hear back from her and I thought, oh my god, she's, she died. I know she died, I just feel it. And I chose not to check in with any of my friends who were on Facebook, cause I don't have Facebook on my phone, but, I figured it would be on Facebook but I decided to go ahead and enjoy my trip in San Francisco and wait till I got home and then I would ask a friend who was on Facebook, um, and I think I was in the airport when I asked my friend, have you heard anything about Susanna?

And she said, oh yeah, I'm just checking now and it does say that she passed away a couple weeks ago. Anyway, Susanna had a CaringBridge blog and I had been checking it. I didn't have it set up for notifications, but I did know how to access it. And I'd read a couple of her entries just prior to my leaving town.

And I thought it was such a gift that she made that blog, um, because I could look back as far as I wanted and hear as many details as I wanted about her sickness and her struggle and being in hospital and everything. Um, And I could only, you know, do as much as I want and no more, but it was so nice to hear her whole story from her perspective at the end of her life in a way that was concise and didn't exactly have an end because you never know.

And she got a very intense infection at the last minute. So she didn't really know that she was dying, but I thought it would be nice to be able to leave that. It sounds morbid. It sounds like you're, you know, overly focused on the future maybe, but I think it is. It's kind of a gift, like, so I decided to start a CaringBridge, and I'm not gonna write much in it because not much is going on for me right now, but as I do work on how to resolve the stress that comes with these kinds of things, and I, my guess is that I'm gonna just kind of take my surveillance into my own hands and spend some money that insurance would not reimburse me for, and go to get a diffusion weighted MRI, which is much more specific than a typical MRI.

Or maybe I'll find an amazing liquid biopsy that's actually proven to work. Some of them are showing promise, but a lot of them are just not there yet. So I want to record those things too, because I don't want to be like slammed with a shocking diagnosis the way that a lot of my friends have been. I want to be tuned in to what's going on.

And I think I am to some degree, but It'd be nice to do so biologically and insurance doesn't pay for the things that would really help me do so in a way that would give me a lot of peace of mind. So at least I can track that on my caring bridge blog. And I think Then it won't be quite as shocking for me, and it won't be quite as shocking for others that really care to know what's going on with me medically.

So that's kind of my resolution coming out of this. I'm not saying this because I'm sharing my CaringBridge blog with you. I haven't decided to do that yet. It might be searchable, but right now it's set as private, and I haven't written much on it anyway, so. Uh, if anyone wants to ask me to be added or to be given the invitation, absolutely ask me.

My email address is KathleenMoss at ProtonMail. com. I'd be happy to add you, but I don't know that I'm willing to put myself on a searchable directory or something like that yet, because I'd like to be able to share really, really honestly. And, uh, Um, maybe do so there instead of on Instagram because of the way that the social media networks are headed.

I'm just not as fond of Instagram anymore and certainly not Facebook. So I may just replace some of my deeper sharing and put it in that direction. And that's all I have to share today. Uh, next episode, actually the next two episodes will be interviews because I took this little pause to talk about myself.

I thought I would go ahead and do two interviews in a row next week and the following week. And they're both other breast cancer podcast hosts, uh, Tina Conrad is no longer a host. Her podcast is no longer active, but there are like a hundred episodes. So you can listen to her at DJ breast cancer and Christina Miner is also hosting currently, she still has an active podcast and hers is called Our Scars Speak. So if you're interested in those, um, and want to listen to them in preparation for my next two interviews, uh, go ahead and look those up. They're great podcasts. I've really enjoyed both of them and I will talk to you next Sunday when I'm interviewing Tina.

Talk to you then.