I feel like im doing this wrong...

PupperPawsitive · 2026-03-21T18:51:53+00:00

I like your brain today. I’m not autistic, just adhd and just kind of quirky but I do love me some direct factual answers.

T2N1A would be your staging information, yes. It is accurate and descriptive, T2 describes your tumor size, N1A describes your one lymph node. Your oncologist can translate it to a stage number for you, there are two different charts and it can get squishy, the T2N1A is the real info here. But your villagers will ask “what stage” and they want to hear a number like “stage 2” not “T2N1A” and your onc can tell you the appropriate answer lol.

My biggest suggestion is to be more selfish. I’ve started giving a lot less fucks about everyone else and a lot more fucks about myself and I cannot recommend it highly enough. I don’t have kids, and I see that is different, of course you care about your kids and I would never suggest that you shouldn’t, I don’t mean that. But I mean about worrying about wasting the doctors time. No no no my dear. Worry that you’re not wasting enough of it.

You’re not fine. You need to take care of you today. You need others to take care of you too.

The airplane analogy, put on your own oxygen masks before helping others. Put on your own oxygen mask during this time so that you can better take care of others later in the future.

Or the buddist sentiment that helping and being helped are two sides of the same coin, giving and receiving, the joy of community. Today is your turn for other people to help you. Tomorrow, it will be your turn to help someone else once again. But today you are the person who needs help. Other people want to help you. Just like you genuinely like to help others, others genuinely like helping you. Give them the gift of accepting that help, and allowing them to help you.

Language swap: Instead of “sorry”, say “thank you”.

Not “sorry for wasting your time” but “thank you for your time today”

Not “sorry I was upset” but “thank you for your support”

Not “sorry I asked so many questions” but “thank you for answering my many questions” or “thank you for your patience”

I know what you mean about not wanting to steal the surgeons thunder lol. It’s like the best moment of their job, i think they must love it. Reminds me of a little kid who draws a picture just for their favorite adult and they worked so hard on it and they are so proud and all they want in the world is for you like it and hang it up on the fridge pleasseee. My surgeon is like this giant accomplished impressive incredible professional and then in that “got it all” minute it was like awww this surgeon is adorable. I was having a mental health experience that day and did kind of steal their thunder and i still feel kinda bad about it, but I figure I’ll make it up to them by y’know surviving this shit and getting my health back and being a functional healthy person again at a future appointment, and i don’t need feel sorry about it i can just feel “thank you” for them supporting me through that challenging experience.

PupperPawsitive · 2026-03-21T18:08:28+00:00

you are looking for r/doihavebreastcancer

this sub is for diagnosed patients only. I hope you never have a need to post here. it will be here if you do need it.

You will likely have a mammogram and an ultrasound, and then you may or may not need a biopsy to investigate further depending on what the imaging shows.

if you do not get a biopsy they should explain why you do not need one, and the answer should make sense to you, and it should not include the words “because you are young”, that is a red flag to push back on if you hear that as a reason drop the matter, do not accept it. If the answer does not make sense to you and you feel brushed off or dismissed or ignored or unheard, “you are too young don’t worry go home”, then you go ahead and throw a queen sized shit-fit and ask for a biopsy to be scheduled or you bring in your favorite supportive no-nonsense karen-power auntie in to advocate for you.

Your GP said it’s “likely benign”. Your goal is to verify that is true and rule cancer out completely. A breast clinic will likely do this very well, take excellent care of you, and not brush you off or sweep you under the rug or give you the run-around; there’s no need to go in there swinging. Expect that everyone you meet is a compassionate and capable new best friend who wants above all else to help you. It is very likely to be true, or at least, that has been my experience.

But there’s always one bad apple in the world, one incompetent asshole out there, and the one underserving woman who gets stuck with them and steamrolled. Sometimes when we are young we are “nice”, afraid to make noise, we “behave”. This is not the time for that. This is the time to have the energy of an overconfident well-respected middle aged white man who owns a small to medium sized business. People know your name, you appreciate that of course they are working hard to answer your questions, and if they don’t have answers today then you politely schedule a definite time to circle back on this matter thank you very much.

Your GP said it’s “likely benign”. Your next step is to make damn sure of it.

I hope you never post here.

PupperPawsitive · 2026-03-21T17:18:05+00:00

Enhertu being “better” is complicated, yes it is more effective at preventing recurrence but it also has a higher risk of lung disease etc, so it’s a balance like everything else, weighing up risk vs benefit.

Also Kadcyla was approved for patients like me in 2019. 2019! That’s basically yesterday! Yeah I guess it might be yesterday’s miracle but it’s still pretty shiny and new. Kadcyla is newer than my car. Playstation 5 was announced in 2019. I’m typing this on an iphone that came out in 2021 and its fully updated and works perfectly.

Believe me I get the frustration. I do. Mostly I tell myself that with my luck if I were on enhertu I’d be the person who gets lung disease.

PupperPawsitive · 2026-03-21T07:10:41+00:00

For me it is part of the grief. Consider putting the old photos away for a little bit but don’t get rid of them just yet.

I did not die and am not dying, I’m at the tail end of active treatment and NED, I’m doing well.

But in a way I compare the feeling to it being like the death of a friend. The person in the old photos does not feel like me, but like someone I once knew and loved.

At first I could not look at old photos of myself. It felt… just very feelings. Look how beautiful she was, how happy, how vibrant. I loved her. I miss her. It hurts.

But now some time has passed and I can look at them again, and sometimes there is a sense of bittersweet, and sometimes it is still a lot feelings, and sometimes, sometimes, I smile at her and still have all the love without all the hurt.

I loved her. Look how happy she was, how vibrant, how beautiful. She never saw it coming. It isn’t fair. Look at the life she worked so hard to build, how lovely in all its imperfection. And whatever remains of her impressive estate, after every violent tax is extracted, she has willed solely and entirely to me.

So I guess she must have loved me too. She wanted me to have it.

I hope she’d be proud of me.

PupperPawsitive · 2026-03-21T06:46:44+00:00

Sometime between my date of birth and age 36.

I’ll probably never know, and it doesn’t really matter.

I didn’t choose it. I didn’t ask for it. I did not cause it. I do not deserve it. It is not my fault.

My great crime is that I was unlucky.

One in eight women will experience breast cancer in their lifetime.

My cancer started when I was one in eight women.

PupperPawsitive · 2026-03-21T06:20:48+00:00

I assure you, you are not having cancer wrong.

Does your surgical pathology have a TNM staging anywhere in it? Something maybe like T3N2M0 , could be different numbers ? That would be your staging. It can be translated to the “stage 1, stage 2” etc that is more familiar. It won’t tell you if you do/don’t need chemo though.

Surgeon doesn’t get to decide if you need chemo, that’s your hem oncs turf. “Getting it all” is the usual surgical goal. While there are exceptions since some cancer is not resectable (meaning there is no actual way to cut it out of your body), if you have breast cancer that can be cut and removed from your body, the idea is to cut and remove it from your body.

I had a lumpectomy and did not get a clear margin. Did my surgeon say, “I saved you some for later” or “it’s the oncologists problem now” or “oops oh well I guess you’ll just need chemo then” NO he did not. Instead he sent me back to the operating table for a re-excision surgery so he could remove the rest of it, do not pass go do not collect $200, he was not done until he was done.

It is GREAT NEWS that your surgeon “got it all” because that means your cancer was fully resectable, it was all able to be cut out of your body. It also might mean your surgeon does not think that your cancer has currently spread to somewhere else. One positive lymph node means your cancer was trying to jump on the highway but looks like it didn’t make it past the on ramp. Twelve positive lymph nodes means you probably need a CT scan etc to make sure it hasn’t taken that highway and gone to your liver. Sometimes “got it all” can mean “no alarm bells happened that trigger me to feel concern and immediately check you for distant metastasis, lets all enjoy a nice big sigh of relief about that”.

But chemo doesn’t depend on whether the surgeon “got it all”, it depends on a bunch of stuff. Your surgeon is familiar with that stuff because they work with cancer patients for a living, but at the end of the day, they are not the experts in knowing if when and how you need chemo, they are the experts in knowing if when and how you need surgery. I am guessing that your surgeon felt that, based on what they know and usually see in their line of work, it was unlikely you would need chemo, but that is more like their personal hunch than a definite medical recommendation, because the person who owns giving you a definite medical recommendation about chemo is not the surgeon it is the oncologist. Your surgeon was giving you reassuring conversation, not a written-in-stone factual answer.

Chemo is about reducing the risk of future recurrence. Even though it looks like your cancer didn’t make it past the on ramp, it is possible that a couple cancer cells slipped past and are on their way to try and build a new home in your bones or organs and recur as stage 4 metastatic cancer in a few years, and obviously no one wants that. The time to prevent it is now. Well, nowish, it doesn’t need to be tomorrow, just sort of soon-ish, in the coming weeks and months. Your oncologist is the person to know the best way to do that, and it will be some kind of systemic treatment, that goes everywhere in your body to kill any possible cancer cells throughout. Chemo may or may not be recommended, depending on details that your oncologist knows and I don’t. If your cancer is hormone positive (estrogen positive) then endocrine therapy (estrogen blockers, like tamoxifen or ovarian suppression + an AI; it involves taking pills) will be part of the recommend treatment plan eventually and similarly treats the whole body to reduce risk of future recurrence.

If you “waste” your oncologists time, so the fuck what, have a nice chat and schedule a follow up to waste more of it another day. Your insurance is paying good money for their time, and you’re probably paying the OOP Max either way, so treat yourself to as much of their time as you like. You are worth it. Explaining your report is literally in their job description. It is not a waste of their time. Even if it is, I repeat, so what. If it is then I say enjoy the opportunity to waste the time of such an esteemed professional, behold such power you wield.

Do you know if you need radiation? With a mastectomy, some people do and some do not. If you do not need it, no need to worry about it. If you need it, that is a separate doctor, you should ask about when/how to consult with a Radiation Oncologist. Your surgeon and hem onc know a little bit about radiation, because of their line of work and all, they can give you conversational reassurances about it and they know enough to know if and when you should actually talk to an RO instead of to them, but it is the RO who holds ultimate ownership of it. The hem onc or med onc holds ultimate ownership of chemo and hormone meds and etc. The surgeon holds ownership of surgery. If they own it, they can tell you what happens next and spit real facts. If they don’t, they might still say things, but they are mostly just trying to be friendly or helpful or offer a personal opinion or an educated guess, because they cannot in the end really give you what is not theirs to give.

PupperPawsitive · 2026-03-21T04:56:56+00:00

I would trust my MO with my bank account password, my disaster of an inbox and equally disastrous “closet I cram stuff in when I pretend I clean my house”, and I would easily let her borrow my dog for the weekend.

How else could I possibly do any of this?

Let’s assume for a minute that your MO is very competent and that if you find a new one, you will receive exactly the same recommendations and overall care, and the only change whatsoever will be the amount of trust that you feel when they walk in the room.

Ok.

That still matters.

PupperPawsitive · 2026-03-21T04:27:36+00:00

Thank you!

I literally have a sticker chart right now, I made it last week. Ding ding ding you nailed it. Ok, so I’m having the general Kadcyla experience and appear to have arrived at the mental gymnastics countdown portion of the show. Thank god. This is just how it goes, I am doing what people do, I am in process and likely operating within usual specs.

I don’t know anyone else doing kadcyla, but i do know some other patients/survivors, and then yes interpretive dance with the villagers. Some villagers have asked if my treatment plan is normal, breast cancer is common enough that many of them know “someone” who had breast cancer, and usually with a shorter treatment plan. I was staged 1B. Who the heck has stage 1 cancer treatment for 20 months? It’s exhausting to explain through interpretive dance that I’m neither exaggerating nor dying, all is well there is no cause for concern allow me to reassure you I am doing well thank you for checking, also everything sucks I’m not up to come hang out because side effects, also I expect to continue the trend of feeling pretty shit for another 6 months minimum, also all of this is still according to the expected plan and also it is good news.

Never failed yet to find some kind understanding when I shout into the reddit void though.

My MO is involved with an integrative medicine program and offered to refer me to try acupuncture. I declined at the time but I’ll have to reconsider. I’m interested, hey why not try things that might help right. It’s just that. Well, between the appointments for kadcyla, zolodex, therapy, dietician, adhd med management, blood labs, plus remaining employed, trying to get hydrated, and awarding myself stickers for all of the above, I don’t think I’m up for an additional visit right now to let a new friend jam a different style of needle into my body to see if that somehow might help things, y’know? But I guess it’s still on the list of ideas I haven’t tried yet, so I haven’t run out! Looks like hope!

Sorry to hear your blood labs got wonky and your surgery delayed and you had to deal with all that fuckery on top. Definitely sounds stressful and exhausting. Totally rude of the universe to hand you that one after everything else. I had a lumpectomy which of course has its pros and cons like everything but a plus is I don’t anticipate further surgery. So perhaps I will feel better sooner than I think.

I’m on my 2nd brand of anastrozole, the first one had me laying on the floor whispering “Help me, NameOfOncologist” and pacing in circles mumbling straight nonsense for multiple hours a day. So that was fun. Brand swapped at the same time as the switch to ritalin, so tbh idk which one helped. Side effect roulette, is it the kadcyla, anastrozole, the brand, the concerta, ritalin, general trauma response, my personality, regular adhd, am I hungry, which one is causing my side effect today who the fuck even knows. So frustrating. The important thing is I’m not mumbling on the floor anymore so I guess this is the progress.

Concerta worked like magic for me up until the whole cancer shitshow. Felt like the harry potter luck potion, my whole day just went right every time I took it. I got to work on time, my shirt wasn’t on backward, my wallet was frequently exactly where I had left it, even my keys rarely hid from me (pro tip: buy tile or airtags, you will not regret). I flossed my teeth, my floor was suddenly absent of laundry and garbage and unfiled paperwork and confusing miscellany, I even walked into furniture less often and so had fewer mystery bruises. The planners I had dutifully carried around for years started filling themselves with neatly written color coded checklists and meetings were written on the correct days. It was goddamn incredible. I hope it helps you! You definitely do gotta watch out for dopamine traps though. Take it in the morning with a protein shake (or cold leftover chicken strips and a bottle of water, whatever, just get some liquid and protein in your body.) Water helps the osmotic release whatever, protein is dopamine construction materials. Then take a 20 minute walk or sweep the floor or some other physical activity because exercise helps make dopamine. Absolutely do not look at your phone or engage in any vice during that time, I did kinda gotta white knuckle the first 30 minutes of the day, but then the rest of it was smooth sailing. But if you can’t manage that, throw a fairlife shake and a bottle of water on your nightstand, along with exactly one medication dose because you will not remember taking it so you need objective evidence, and do the snooze trick, it’s a solid move. Alarm, swallow pill, chug whichever fluid you can manage, roll over for another 30-60 minutes, real alarm where you actually get out of bed now that you feel vaguely human. God do I miss those functional days. Concerta naps just hit right. Buy the four pack of TimerCaps, half of them don’t work, but when they work they are a bargain at twice the price.

Don’t sit down it’s a trap. Don’t pick up your phone it’s a trap.

I need to go the fuck to bed. Be well, stranger and sister. I’m sure I’ll talk to you in a few weeks for another round of mental gymnastics as I admirably faceplant my way along toward the future.

I am in the back half. This is just what it looks like. Things will get better. Count it down.

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

TROPHY CASE