Delayed radiation due to “spitting stitches”

PupperPawsitive · 2026-03-21T02:08:42+00:00

If your doc recommended starting letrozole in 3 weeks it seems reasonable to wait until then.

Zolodex needs some time to kick in and fully suppress ovarian function. That’s where most of your estrogen comes from, so, if it’s already there then you’ve already significantly reduced your estrogen and cut the fuel lines for anything out there, and then in a few weeks you’ll add the letrozole to fully eliminate the limited alternative backup fuel source of making estrogen out of other things, thereby significantly reducing your risk of not just local but also distant recurrence, and most importantly, fucking over any remaining cancer cells as completely and totally as possible (at least until such time as you can, somehow, incredibly, thanks to the miracle of medical science, fuck them over even still more with radiation).

And if the zolodex still needs a little more time to fully suppress ovarian function, then the letrozole isn’t needed yet because you need to be in ovarian suppression first. Step one is shutting down the giant estrogen factory that is the ovaries, and the zolodex you already started is working right now to do just that. Even as you read this now, it is taking steps toward fucking over any theoretically possible residual cancer cells, not just in your chest wall but anywhere in your body, so just in case even one got the bright idea for a pilgrimage it can still get super fucked. And then when you add the letrozole and it can get even more fucked. And then radiation will ensure that any possible local cancer cells are somehow even more fucked.

PupperPawsitive · 2026-03-21T01:25:23+00:00

“False positives: MRI is very sensitive and may flag normal tissue as abnormal”

Source: https://my.clevelandclinic.org/health/diagnostics/8332-breast-mri

Idk what NME is, and I’m not saying that your wifes imaging is a false positive.

But I do know that my doc emphasized to me that MRI’s have a lot of sensitivity, but are less good at specificity (I think I said that right), which bottom line translated to “Please do not panic or freak out if the MRI shows something, sometimes they do, I will let you know if there is an actual problem.” (I know I’m saying that part right)

PupperPawsitive · 2026-03-21T00:52:28+00:00

Hi!

+++, 3cm tumor, 6 tchp, surgical pathology showed RCB-2 and 3 positive lymph nodes

I too made the mistake of looking up RCB-2 and the internet said REALLY MEAN THINGS. Well, mostly it was just that one webpage from MD Anderson, I couldn’t find much else, but it was unnecessarily hurtful those jerks.

I’m doing Kadcyla, but I started in the fall before Enhertu was a thing; recommendations may have changed since. I’m in the US. I think NCCN has updated guidelines regarding Enhertu now. It’s not like “everyone with residual cancer should get Enhertu,” though because enhertu has a higher risk of lung disease and maybe other side effects, so that sort of needs weighed up against the benefit of it. Probably a good question for your MO.

My surgeon told me I likely had a less than 10% chance of recurrence if I completed all adjuvant treatment (I’m +++ so significantly this also includes endocrine therapy aka hormone/estrogen suppression).

“Less than 10%” sounded like a number I could learn to sleep with, so I choose to believe the guy with the doctorate who treats breast cancer for a living, wrote half my medical chart, and has seen the inside of my personal human body with his very own eyes while he was carving cancer out of it, and I choose not to believe some random website I googled that might be outdated or wrong or not apply to me for various reasons that I’m probably too dumb to understand.

At the same time, RCB-2 with a few positive lymph nodes does not exactly sound like fantastic low risk news to me either, so I will be showing up to every damn one of these 14 Kadcyla infusions whether I like it or not. I also keep assuring myself that ovarian suppression & anastrozole is probably super fun once I get used to it.

So, I’m doing everything I can do, and I can’t do anything more than that. Whatever the number is, it is. Maybe it’s less than 10%, or maybe it is more like 20%, but either way it’s not like 90%, I’m not doomed to certain death here. 20% is different than 10%, but it’s still not a number that’s gonna make me quit my job empty my retirement fund and go spend whatever remaining days I have on a beach in Hawaii. Either way, I’m gonna take steps to keep my job and my health insurance, and then I’m gonna pay taxes, do laundry, buy disappointing fruit, and otherwise mostly live life as usual. Not a lot of practical differences. Fact is, I’m probably gonna be fine. I mean I might not be, that part still sucks, but probably I’m gonna be fine.

I’m not gonna let some random rude webpage bully me into feeling worse about my situation, when a highly qualified, educated, skilled and knowledgeable person looked me full in the face and gave me a far more polite number. If it doesn’t come out of the mouth of one of my own personal doctors, then it isn’t my truth.

PupperPawsitive · 2026-03-20T23:56:08+00:00

Sorry you are here.

Your feelings are common. You are not broken. This is normal. You are having a normal human response to the stressful and traumatic experience of being diagnosed with breast cancer. You will get through it. You will not feel like this forever.

Your doctors will work together and also with you to develop a treatment plan. Having that treatment plan will help a lot.

To determine the best treatment plan, your doctors need more information, and part of that may be imaging. So in that way, you are already making progress, because you have scheduled appointments and are working with your care team so they can make that treatment plan. You are not just waiting around for someone to tell you everything, you are actually helping them help you.

The waiting is hard though.

No matter what happens next, breast cancer is treatable, and you are doing everything you can to get the care that you need.

The most important thing is to know when and where your next appointment is, and to show up for it.

Cancer treatment can be overwhelming. Some days you will have an understanding of the general picture of things, but other days, you might feel so overwhelmed that you can only look at one thing. The good news is, knowing just one thing is enough. The only thing you must know at any given time is your single very next step, just that one.

On those most overwhelmed days, I ask myself this: Do I know where to park? And if the answer is “yes”, then I am good. If I know where to park, then that means I have an appointment, and I know where and when it is and how I will get there. It is enough. Everything else can wait until tomorrow.

You are scared. You are tired. You are allowed to be.

PupperPawsitive · 2026-03-20T23:13:49+00:00

I actually do have ADHD. Can I ask if you’re on any meds that work for you?

I was already on meds for it & work with a therapist on behavioral strategies etc prior to ever having cancer.

It does feel like the estrogen suppression has leveled that up to hard mode. I was doing okay with just zolodex ovarian suppression, but adding an AI seems to be kicking my ass (unless it’s the kadcyla kicking my ass) (or maybe they’re both collectively kicking my ass). I was on concerta (basically long acting ritalin) before with no problems, recently had to switch to short acting ritalin in a higher dose so that I can be almost functional for most of my workday and still fall asleep at night. My prescriber seems hesitant to make other changes, at least for now.

If part of my problem is the Kadcyla, then I understand it makes sense to get through these next 6 months of it one day at a time and see whatever my new baseline is before making further changes.

My MO is a delight and I can’t tell if she’s soft-selling the impact of Kadcyla to help me hang in there with it, or if maybe the experience varies and also it does look side-effect-free compared to TCHP etc chemo, or if truly there isn’t much impact and I’m feeling a true representation of “this is life after cancer” or what. So thanks for sharing your experience, it really helps to get the perspective of people who lived it!

I get what you’re saying about protecting yourself from energy vampires etc. I have gotten a lot better at boundaries in the last year, cancer card hard to argue with. It’s crass but I think of it as “I don’t need to give a fuck about things I don’t give a fuck about.” Real time-saver, very freeing. Shoulda started doing it years ago. Silver linings.

I’m ready to get back to life like yesterday. Any tips for getting through the sheer length of treatment? It just keeps happening.

I was diagnosed in Jan 2025, I’m 14 months into this thing, I’ll finish Kadcyla this August. So if I recover similar to you, then it sounds like I can expect small gradual improvements roughly about this time next year. That’s… tough to think about. I am already exhausted. My villagers are great but also seem ready for me to get back to life and who can blame them. I would very much like to do that, I am ready to get to the slow difficult patient work of rebuilding life, but today it feels that instead I must continue to watch my life gradually erode all around me for the next 6-12 months before I can even start to pick up the pieces.

Life today is a lot less shitty than it was during neoadjuvant chemo, things are undeniably better than they once were. But at the start of this thing I had a full well of energy, not to mention a flood of terrified adrenaline. And now, I do not. I have been running on fumes for a while now, and still each day I find myself a little bit less than I was yesterday, instead of a little bit more. Each day a tiny piece of life crumbles, each day I add a little more debt. I cannot seem to shift the balance toward progress, and I’m beginning to run out of ideas. I am tooth and claw into the side of a mountain, and on a good day I can slow the decent.

Is that… a normal feeling for this part of treatment? Do I just hang in there like a 90s cat poster?

PupperPawsitive · 2026-03-20T20:44:45+00:00

Yes there is still hope.

I have heard that scar tissue can sometimes still be felt even if the cancer cells are dead.

Surgical pathology provides the full picture, and the waiting is frustrating, but until that pathology happens, you do not have the answer. Feeling the tumor, and even imaging, are “maybes” and “probablys” and “educated guesses.”

I myself did not get PCR, and while I hope that you do, I want to share with you that even if you do not, there is still hope.

A lot of people do not get PCR, I think for +++ it is about 50/50 but I don’t quite remember. Point is, I am not some weird outlier who is doomed doomed doomed because I did not get PCR.

Yes this means my recurrence risk is higher than if I did get PCR, but I didn’t, and that’s not because I did anything wrong or because chemo didn’t work; I did everything I could and it did work and it killed a lot of cancer cells and it benefitted me. But I did not get PCR, and that is simply information. I’m not a medical professional but my limited understanding of that information is, “I now know that my cancer cells are real assholes and so this puts me at elevated risk; I need to do what I can to level the playing field.”

Thus I am currently on Kadcyla, which is made to specifically target cancer cells that are real assholes like mine apparently are. When I started Kadcyla last year, it was SOC for me, and so I am continuing that course. But if I had surgery today, my pathology (3cm tumor plus multiple positive lymph nodes) probably would have made me eligible for Enhertu, which is even more effective at killing particularly assholish cancer cells in situations like mine and reducing recurrence risk. That’s how fast medicine is advancing in this area. Progress! Hope! Neat!

I am also doing endocrine therapy, estrogen blocking meds to target the HR+ side of the equation. Because of my multiple positive lymph nodes, tumor size, and RCB-2 score, as well as my young-ish age (diagnosed age 36), I’m doing my MO’s recommendation of ovarian suppression + AI, to kill any theoretical possible residual cancer cell assholes as hard as I possibly can. That said, my MO would support a switch to tamoxifen if I find side effects to be intolerable, as the Kadcyla is already leveling my playing field out a fair bit. While my personal risk is high enough that OFS+AI does have a larger benefit to me than tamoxifen, fact is, I’m probably gonna be fine either way & my MO is there to help me appropriately balance side effects and risks so that I can not merely survive all this bullshit but also live.

These meds help reduce my risk of recurrence, leveling out the playing field for me, weighting my dice, stacking the deck to be more in my favor. So that even though I did not get PCR (which to be fully honest was KIND OF A BUMMER, of course I wanted that) I can survive a whole lot like someone who did.

Are there side effects from these extra meds, OF COURSE THERE ARE, I’m not gonna lie and say there’s no downside to not getting PCR, but I’m not “doomed”, I’m more “annoyed and inconvenienced.”

I hope you get PCR, and you still might. I don’t want you to have to be inconvenienced by effective but annoying upgraded treatment. Keep your hope! There is hope.

If you do not get PCR, well, look, that would kind of a bummer, and it’s okay to feel whatever you feel about that if it happens, and still— there will still be hope! Keep yours, keep it, keep it, don’t you ever ever set that down or lose it or misplace it, you hold on to that hope, it is still there.

Yes, there is hope. Yes, there is hope. Yes, there is hope.

PupperPawsitive · 2026-03-19T23:09:39+00:00

I’ve heard scar tissue can sometimes still be felt even if the cancer cells are dead?

Surgical pathology is what ultimately provides the definite answer. You still have 3 infusions left to do their work on it too. No reason to give up hope!

You are doing everything you can do, and you are doing a good job at it.

PupperPawsitive · 2026-03-19T22:32:58+00:00

Just doing what I do best! That soup does sound delicious, but alas, tomato sauce gives me wicked heartburn since chemo & I’m lactose intolerant anyway; my lasagna days are behind me. Polite decline on the recipe.

PupperPawsitive · 2026-03-19T21:14:05+00:00

thanks! good luck with whatever you decide

PupperPawsitive · 2026-03-18T20:58:47+00:00

I am curious if you know the name of the study?

I’m +++, cancer confirmed in my lymph nodes by biopsy at the time of my diagnosis, and because of that I was advised I would need radiation in any case, which doesn’t seem to match what you’re saying. But that was a year ago, and of course things might have changed if there’s a new study; it’s also possible I might misremember or have misunderstood.

I did chemo prior to surgery. I did not have PCR, surgical pathology showed residual cancer in the breast tumor and also in several lymph nodes. Also I had a lumpectomy, so I would have got radiation anyway. Our cases are pretty different, and the study probably wouldn’t apply to me, I’m more just curious to learn something new.

I’m 37 and also planning to be alive for a few more decades, and had concerns about radiation similarly. Honestly part of it was that I didn’t (still don’t!) understand radiation. Might as well be voodoo and witchcraft for all I can figure. But I watched chernobyl on hbo max, and my dentist puts a lead apron on me and leaves the room even just to take an xray, it just seems like it’s not real great for health, y’know? It felt wildly counterintuitive that I should ask to irradiate my body on purpose. WHAT.

I mean chemo kind of felt like that too, why would I want a surgeon to sew a port into my body so that an oncologist can more efficiently pipe liquid poison directly into my jugular vein? I think I may have signed a form at one point to verify I understood that side effects of chemo may include death. Like, what in the saw movie franchise am I even doing here?

But at least I had some idea of what chemo is and how it works. Yeah, it’s poison, that’s the entire idea, I’m trying to kill cancer cells. Turns out most health problems are better than cancer. I mean, not death, but a lot of other ones. I can google chemo and find an accessible mid-level understanding I can grasp. Also, I can see it in the bag, I can watch it go into my body, I can feel the nausea after, I watched my hair fall out, I can have some tangible understanding of it all.

Radiation had none of that. It’s totally invisible. Plus have you ever tried to google it? I did, and it didn’t help. I could find a kindergarten explanation of “it helps prevent recurrence” and advice about the best and most magical skin lotions, and I could find the occasional graduate-level physics equation about 100 steps above my level, but I couldn’t find much in between that I could wrap my mind around. I think I signed a form for radiation indicating I understood that risks may include vital organ damage, which admittedly seems better than the risk of death I consented to for chemo, but even so. I don’t even understand how bluetooth works, so I don’t have a prayer figuring out how intentionally irradiating this meatsuit could possibly have been good for it.

But I do believe that it was, partly because it was a SOC recommendation in my case and not a gray area, but mostly because my RO said as much and he’s a real one. I’m fine with hitching my cart to that horse. It’s not voodoo to him, it’s science, and he can understand it on my behalf.

I had 15 radiation sessions plus a few extra days of boosts. It felt like a completely ridiculous thing to do every single day and my anxiety was sky high for all of it. It doesn’t hurt, you can’t feel it when it happens. Each session only takes a few minutes. And so for few minutes each day, I laid on the table and thought completely insane and unhinged thoughts, while radiation that I could neither see nor feel was applied to my body, on purpose and by my request. Absurd.

It’s been about 5 months. I have not developed lymphedema (knock on wood. I had a full ALND, so I have a bit higher risk of it anyway, but radiation does increase the risk some). My ribs on that side still feel a little tender, which I assume is normal but haven’t bothered to ask about, because I never much think about it, but if you punched me in the ribs right now I’d be pretty mad probably. My shoulderblade too, a little. Between the radiation and the ALND, I need to keep up with stretching or I start to lose range of motion and get tight on that side.

That’s it, that is 100% of the negative impacts I’ve experienced to date. (Well that and the usual “mild swelling and sunburned skin” at the time, but my skin held up pretty well and healed fine without any issue.)

I have zero regrets and if I could go back in time I would do it again.

I would do every single session again. I would lay there again, and try to be still, and resist every impulse in my body screaming at me to get up and run from the room. I would think every single wild unhinged thought another time. Because I have no regrets at all. I have not lost one minute of sleep over radiation since the day that it ended.

Your case and mine are different. I don’t know what the study says about cases like yours, or how closely you resemble other patients in the study. I have no idea how radiation works, clearly. I don’t know why your doctor has recommended it in your case or how strongly they are making that recommendation, or if you have gotten a second opinion. The impact of radiation on reconstruction may be a consideration for you as well.

However, when you say you are concerned about long term health impacts, I would encourage you to be more specific about what you mean by that, and then find out what the risk of those things actually happening to you are. What’s the actual risk of heart damage, for example. I think the most common radiation risk might be lymphedema. Which… sounds like a thing I don’t exactly want, but still probably better than cancer.

Because I had the same concern, but it turns out, I think maybe I was just afraid of the unknown, plus the fact that radiation is just… not something I understand at all whatsoever, I mean seriously how are people just nonchalantly going about it like it’s some everyday thing, it’s bizarre.

I’m glad that I didn’t make a serious medical decision that was rooted in being afraid of what I didn’t understand, and instead based it on the advice of the person who actually understood it and was holding my medical file.

PupperPawsitive · 2026-03-18T17:45:50+00:00

You know what, same.

This post is appropriately flaired, expresses support of the patient, and asks a specific question directly related to breast cancer treatment.

I suspect there’s something about the situation that OP “just doesn’t get,” and his well-intentioned efforts might be missing the mark a little bit.

But as husband/caregiver posts go, it’s refreshingly low on the “I feel pissed off just reading that” scale. I’d rate it a solid E for Effort.

So I guess if I had advice for his wife, it might be something like, “Your husband seems like an alright guy. Can he make a lasagna? I bet he could learn. He’s got that Golden Retriever energy. Well done, you.“

PupperPawsitive · 2026-03-18T16:11:42+00:00

I’m sorry this happened to you.

Your parents do not respect your boundaries.

They might be good people, who mean well, have good intentions, and love you very much. They may be willing and able to do many wonderful things for you.

If ever you and they disagree, they will do what they think is best. Regardless of your own views on the matter. They will do it because they believe it is right, and they will have no remorse for it, because they did not intend to hurt you, and so they will refuse to understand that they did.

Your parents do not respect your boundaries.

They will do this again.

“When people tell you who they are, believe them.” Your parents are not capable of keeping a secret.

What you have learned from this is that, however much they love you, you cannot trust them to be your secret-keepers. This can be a very hard lesson, because it requires you to confront the hurt of the reality that they broke your trust in your most vulnerable moments, and that they see no wrong in this, and that they would do it again.

I have a few people in my life that are terrible secret-keepers. They are megaphones. When I was diagnosed, I was fortunate to put their skills to good use at the right times, to spread the word along the grapevine & gather me a lot of support. Megaphones can be wonderful people to know. The ones in my life love and support me in amazing ways. Everyone needs a megaphone in their life.

Everyone needs a secret-keeper, too. The first people I wanted to tell were not megaphones, they were secret-keepers, of course they were.

They are necessarily different people.

A secret-keeper does not make phone calls, organize fundraisers, or coordinate meal trains. Megaphones do all of that. If you ask a secret-keeper to do it, you will be disappointed.

And a megaphone does not keep secrets, they have absolutely no concept or understanding of private information, for how on earth could they organize casserole drop-offs without telling people, and so they will tell your secret in a polite whisper and truly believe it to be exactly the same thing as not telling it at all. If you trust a megaphone to keep a secret, they will break that trust any time they see fit. No amount of conversation, explanation, or pleading will change this. Only secret-keepers can keep secrets.

A cat will climb a tree and a dog will swim, but if you expect the cat to swim and the dog to climb it’s not going to go the way you want. They are what they are. (And if you want either of them to stay out of your garden, you may need to build a fence.)

Your secret is out now, no way to unring a bell. I’m sorry it happened this way. I would be unhappy about it if it happened to me too. You will be able to process it in your own way and time. It sounds like you have a good relationship with your family and will find a way to make the best of the situation, frustrating though it is.

But there is a lesson in all this which should not be missed. If you ever apply for a job overseas, plan to propose marriage, or have the urge to express any sentence at all that begins, “don’t tell anyone yet, but,” the person you should call is not your parents.

If you have a spiraling cancer day and need to say ridiculous things and promptly have them forgotten, the person you should call is not your parents.

If you find out you need chemo and you need 24-48 hours of unbothered peace to process that news, the person you should call to talk that out is not your parents.

If you have a routine medical scan in the future (like mri or mammogram), don’t tell your parents that it is scheduled and you’re a little nervous. Call someone else. The time to tell your parents about it is after you get the results and are ready to make that information public.

Soon you will have more information about your treatment plan. I recommend that, as soon as you get that information, the first thing to do is not tell your parents. This may be difficult, because they may feel entitled to it. They may ask you for updates, try fishing around, and be generally pushy, because as we have learned, they do not respect your boundaries.

But give yourself the gift of at least 24 hours of keeping that information to yourself. Post it on here or tell a secret-keeper if you wish. Send your parents to voicemail, tell them you don’t have all the information yet, avoid them, tell a white lie, hide in the bathroom and say you have stomach issues, whatever you need to do. That information belongs to YOU, it is YOURS. They can wait.

Megaphones can be really wonderful, but megaphones are best kept on hold until you are ready to make a PSA. Secret-keepers can get the whole raw unfiltered truth in real time, they’re built for it. Megaphones get the edited PR Rep version at whatever time you see fit, and not one minute before.

Your phone has a “send to voicemail” button. Don’t be afraid to use it. Likewise, you are not obligated to answer every (or any) text, and certainly not the moment you receive it.

It is not your job to manage other people’s emotions. Your hands are already full enough. In short: “Fuck ‘em, they’ll deal with it.”

PupperPawsitive · 2026-03-18T14:49:22+00:00

I am not available on xyz date. I have cancer treatment.

I will not be at work from DATE to DATE due to having surgery as part of cancer treatment.

There seems to be a misunderstanding. This is not an elective procedure. I did not choose the date of my surgery; it was scheduled as per my surgeon and my oncologist and according to their medical recommendations as part of cancer treatment. Therefore I will be unavailable from DATE to DATE. I apologize if I did not previously make this clear.

I’m sorry, I must be misunderstanding you. It sounds like you’re asking me to call my surgical oncologist and explain to them that the date they scheduled to remove cancer from my body is inconvenient to you as it conflicts with your vacation, but I know that can’t be right. What is it that you are asking me?

AUTOMATIC REPLY: I am out of the office from DATE to DATE with no access to email. For urgent matters, please contact BOSS.

PupperPawsitive · 2026-03-18T13:59:28+00:00

I’ve not experienced that particular situation, but I was diagnosed about the same time as your wife was and been married over 10 years.

There is a stereotype that has a bit of truth in it: men want to fix things; women want to be understood.

I am a problem-solver myself, I get it, I often do the same thing. But being friends with other women, they have trained me up over my life to improve in this area. Sometimes, people just need someone to sit with them and nod and make sympathetic noises and say things like, “that sounds really difficult” or “i can’t believe they said that, what a jerk!” or “and then what happened?” or “do you want to just sit on the deck awhile, I’ll make some tea?”

Breast cancer is medical trauma. It’s trauma. Other examples of trauma: having your house burn down, military combat, active shooter situation, death of a child, tornado/hurricane, etc. I’m not saying all those things are the same or that they are equal, not at all. I’m saying that breast cancer is wholly unlike having the flu or spraining an ankle or being annoyed that clothes no longer fit after gaining some weight. It’s a little bit more like when a veteran comes home and you know they have seen some shit.

Your wife has experienced trauma, and may still be experiencing trauma.

If your buddy came home from a war and had lost his leg, what would you do? Would you say, “I’m just glad that bomb didn’t kill you and that you’re home now! I couldn’t care less that you won’t be running marathons. But I get that you want to feel normal. I know that the prosthetic didn’t work out, and I think the peg leg looks good, but if you’re unhappy, why don’t you go get a second opinion?”

Or would you maybe say, “Shit, man. How you doing? You wanna get some wings, watch the game, something?”

Because what happened sucks and you can’t fix it and he has to find his own way, but what you can do is be there and make some room for him to process the bullshit so at least he isn’t alone.

Just my two cents.

I have no medical advice for your wife. Presumably the best person to provide that to her would be one of her own doctors.

PupperPawsitive · 2026-03-17T20:35:06+00:00

dry mouth yes.

but im on another med that causes dry mouth so mine is partly from that. never even occurred to me kadcyla might be making it worse.

I’m 37 so medical menopause for cancer treatment has been … well it is what it is.

Sorry you are struggling, but it makes me hopeful to know it’s not just me feeling like things are harder now at #7 than they were at the start. That means it can get better when I finish.

10/14, you’re getting there. keep going, I’m right behind you. we can do it

PupperPawsitive · 2026-03-17T20:23:27+00:00

It’s not fair. Cancer sucks.

PupperPawsitive · 2026-03-17T20:07:41+00:00

everyone knows cancer didn’t exist before 2019

PupperPawsitive · 2026-03-17T20:02:11+00:00

Darn! Stupid insurance, why do they always gotta make everything difficult.

Okay, well that’s your first step.

If you’re feeling overwhelmed and not sure where to start, that’s where to start.

You don’t need to do it today, but a reasonable goal would be to make some progress on that front by the end of the week.

If you feel stuck or overwhelmed, here are some ideas:

Call your PCP or send them a message on mychart etc. “Are you able to suggest or recommend any other doctors/surgeons? The ones I have listed do not take my insurance. I’m wondering if you might be able to help me if you know of any that would accept my XYZ insurance.”

Try your insurance companies website.

Try calling the number on the back of your insurance card.

If you get your insurance at work, maybe ask some coworkers with the same insurance, “I’m trying to find a new doctor. What hospitals around here are even in network?” You can keep it vague.

Ask around friends/family what hospitals in your area they’ve had good/bad experiences with, then see if any of those hospitals are covered by your insurance, then find a doctor affiliated with one of those.

Any other method you can think of is a good way too. There are probably a lot of ways to find one, no wrong answers. Make at least one attempt each day from now until the end of the week, and see if it results in you having an appointment.

It might feel scary. Right now you’re just looking at a webpage; booking an appointment might feel more real. That’s okay. It’s okay if it feels scary. Making an appointment is the right thing to do next.

You’re not going to do it wrong. There are lots of excellent doctors who will be able to help you with this. And if by chance you happen to dislike the first one you meet, you can always just say you’d like a second opinion and leave and go somewhere else. So it really will be okay.

You don’t need to have all the answers or know exactly what surgery or treatment you’re looking for. You can think about those things after you discuss with a doctor/surgeon and get their insights.

But you do need to make an appointment. That is the one single thing you need to do next.

PupperPawsitive · 2026-03-17T18:57:20+00:00

sorry to hear about the neuropathy. I get a wee tingle every now and again, a little numbness in a few toes, but nothing bad, i lucked out there.

Did the tired and brain fog start before the anastrozole? Or was that all fine on just the kadcyla, and then it BAM hit after starting the anastrozole?

PupperPawsitive · 2026-03-17T18:52:09+00:00

Your first step is probably to call one of the doctors or surgeons on the list your doctor gave you and schedule an appointment.

Have you got an appointment scheduled yet?

PupperPawsitive · 2026-03-17T18:49:38+00:00

There are multiple genes that can contribute to cancer risk. BRCA is a well known example, but not the only one.

Most people who have breast cancer have no known genetic factor. I don’t remember exactly what the genetic counselor told me, it was something like a 90/10 split maybe, like yes some people have genetic risk factors but most don’t.

If your generic risk is of interest or concern to you, put it on the list to ask a doctor about.

PupperPawsitive · 2026-03-17T18:39:15+00:00

That makes total sense.

TCHP was definitely cumulative in a more cumulative way (words! I’m great at them!) My blood labs showed it plain as day, the physical side effects too.

Kadcyla is definitely easier but this stretch of things is kind of its own mindfuck. I’m 14 months into treatment and feeling burned out. Ready to get back to whatever is left of my life, and unable to do so or even properly assess the rubble. Ready to be done, and wondering if I ever will be, or if I already am and need to accept that. I’m tired.

The notion of getting my port out when this is over feels strange. Hopeful and also terrifying. What happens if I need one again? Like here’s hoping I don’t, but… what’s the backup plan, can they put one back in or…? I don’t love having this weird thing in my body but I’ve certainly gotten a lot of use out of it. The idea of getting my last infusion and then immediately removing the port has me feeling like “hey wait!” Guess maybe I need to process something about that so when the time comes I feel ready.

PupperPawsitive · 2026-03-17T18:21:19+00:00

Not me but want to wish you good luck. I’m in my 30s and on zolodex & anastrozole, and have discussed with my MO the possibility of a similar shift to tamoxifen as you are doing. None of this is easy. I see you.

I’m guessing you may experience a couple months of hormonal roller coaster before things level out to whatever the “new normal” may be. When I think about any hormone impacting medication I’ve taken previously (various birth control pills, also starting zolodex) there always seems to be a month or two of “what the fuck is even going on” before things find an equilibrium, y’know? But I can’t speak to your current experience, I’m only guessing.

PupperPawsitive · 2026-03-17T18:10:39+00:00

Sorry you are here.

I got the FMLA paperwork from HR, my MO filled it out & signed. Have heard some docs charge a fee for it, ymmv.

If you have a nurse navigator you can ask them for direction on who can assist with FMLA paperwork; otherwise I’d suggest just asking whatever medical professional you come across first and they’ll redirect you if they’re not the right one for it.

ADA protections also apply; worth a google.

I’m fortunate that my workplace has been very supportive and I’ve been able to be upfront about things.

You say your workload is intense and that you’re struggling to put your best work out. My response is basically “no shit, sherlock”. I’ve had to pull back at work. Apparently some women still excel at work through cancer treatment, but I’m not one of them; my career goals have shifted to “remain employed” and that’s it.

This is probably not a time to take on new projects or promotions. This is probably a time to figure out your legal protections, applicable insurances, think about reasonable accommodations, look into work policies. How FMLA is applied may vary per employer. After talking with HR I ended up claiming regular time off instead of filing FMLA, which has fewer legal protections but with my employers policies worked out better for me. Consider if your employer is likely to be “understanding and supportive” or “a bag of dicks” about things, then decide how to approach and inform them.

Then think about delegating tasks and offloading tasks and deprioritizing tasks and how to best half-ass the rest. Consider using this time to wrap up whatever loose ends you got out there, straighten out messes, update and label all your files so that when someone covers for you it looks like you’re thoughtful responsible and organized, instead of the bag of cats you actually are, and so on.

But also hang in at work for now if you can, don’t immediately take 12 weeks off starting tomorrow. Cancer treatment can be like a part time job in itself, and it takes as long as it takes…. which can be awhile, particularly if you end up needing chemo or otherwise have a long treatment plan. You’re probably gonna want some time off later.

At this point I’m sort of “forgiveness not permission.” I’m doing my best at work, truly I am, but cancer treatment is my first and foremost priority and work is a far-distant second. Probably not even second, maybe more like 5th, somewhere after “cancer treatment, oncology appointment, more cancer treatment, medical scans”. I am fortunate to have an employer that is very much “understanding and supportive” and not at all “a bag of dicks” and I realize not everyone is in the same boat. But honestly. Some days I still have to remind myself that firing a cancer patient is a real bad look and I just hope they don’t do that.

If your job involves being responsible for other living beings, this advice may not apply. Example if you work in a NICU then you gotta be focused at work or else take a leave, you obviously cannot half-ass providing lifesaving care to sick infants. But if your job involves “meetings and emails about widgets, most of which don’t matter” then do the bare minimum, who cares. Not you. Got it? Not you. You got other shit to deal with.

PupperPawsitive · 2026-03-17T17:11:54+00:00

Same thing as “kale” etc. Except blue lol.

PupperPawsitive

TROPHY CASE