r/TNBC

I took time off work this year to battle TBNC. That ran out so I went for unemployment. That's running out but I'm still struggling to get back to work. I did apply for disability but also despite having to wait 6 more months to begin breast reconstruction it's not certain I'll get disability so I'm considering work again in the meantime maybe waiting a year to reconstruct so I can take out work coverage again...

I have no idea how to navigate any of this. I hate the wig and prosthetics but I can't go outside with such short hair, weight, adrenal insufficiency, no boobs, insecurity...I'm struggling so bad.

Do I go back to work part time? Job market sucks for entry and I have no skills. Is there some unknown pathway I don't know about? I was only able to stay home because my roommate made enough along with my light employment to make ends meet...but I have to hold myself up.

Anyone have a drink while on Xeloda? Side effects worse or about the same?… asking for a friend (that friend is me)

I am almost 12 months out of chemo now and got PCR. I was told low risk of recurrence - maybe 6% and felt lucky but I've been having back and rib pains and am convinced its back and spread. Although some days I have no pain at all and it moves around 3 areas with long gaps between it popping up again. Maybe its psychological. I've now made one area on my back so sore from prodding it (can't feel anything abnormal).

Anyway we got a scan last week, the results are sitting on mychart, they arrived yesterday and I cannot bring myself to open them. We have booked a big holiday for next week for 2 weeks and its going to ruin it and I won't be able to go because of the insurance and my kids wont enjoy it. I didnt get to go on last years holiday because of the wretched insurance. We've booked to go to Disney.

My head is saying wait until I come back from holiday because if its spread I am screwed anyway. I've just lost my best friend to TNBC - she was stage 1 and dead within 12 months of diagnosis. In all honesty, I am terrified

If you are newly diagnosed, just know that you will do great on chemo and stop reading. 😉😘 (although this is not a horror story)

OMG I didn't think I could do this. 18 weeks of TC. Explanation: had a TNBC tumor and a HER2+ node so I did immunotherapy for both types. The HER2 meds have cardiac risk that would compound the risk from AC so I did not do Keynote but it is the protocol for the Scarlet Trial which is in phase 3.

Anyhow, the weekly infusions were brutal as I never recovered. We had a 5 hour round trip drive. ​5 pokes a week for bloodwork, infusion, and nivestym. 18 hours with ice packs and I got neuropathy anyway. Pretty much every other side effect but they at least seemed to take turns being dominant. These last 2 cycles have had me in bed for 3.5 days/ week, even with dose reductions at the very end. BUT I FUCKING DID IT!

I'm thankful I avoided illness, infection, reactions, and serious complications (knock on wood for this week). I did restrict myself and avoided a lot of public places. I was not working at the time of diagnosis but it would have been very difficult to do so. I don't know how many of you do it and I'm grateful I didn't have to try (thanks to hubby).

I'm 49 so old but not super old and honestly I thought I'd handle it better. But it's true what everyone says: this is hard but you will get through. And I did! I showed up. Sometimes with a smile and other times in tears but I FUCKING DID IT!

And next I have DMX to AFC, radiation, and maybe (my MO thinks probably) adjuvant chemo, you know the usual trudge for us. But it feels so great to have this part over (except for the long recovery, but whatever!) I'll do anything to be here for my kids (15, 17). Didn't realize I had so much to say, lol! Thanks for providing support in this space. 💜

Well, it’s finallly time that Marcus and the Twins leave for good. I’ve fought hard with Nova Scotia to get to this point, and I have the breast and plastic surgeons I wanted (HUGE relief). Still going for an AFC but found out I’m a candidate for DIEP if I want that later!! I went in today for my Molli seed placement, got a good look at the mammograms they did (they couldn’t fine my clips on ultrasound) and it’s just empty space where the Twins were in my armpit. Still could see Marcus, but he’s definitely shrunk so I’m hoping it’s just his dead, mummified remains that I’m seeing.

Everyone is like “are you freaking out? Are you scared?” And to be honest, I’m not. I think the thing I’m most worried about is anesthesia, but it would be the same if I was having a bad hangnail removed lol. Mostly, I’m feeling inconvenienced by the entire thing because I won’t be able to fall asleep on my stomach for the forseeable future (priorities, right?).

I’m so ready for cancer to NOT be my entire personality. I’m ready to get my path results because I’ve made peace with whatever they might be (Stage IIIc to begin with). I just want to get to the next phase. The weather is absolutely gorgeous here in Halifax, crisp and breezy. We splurged on a fancy hotel tonight- so I have the windows wide open and am listening to the sounds of the city. And I had Japanese cheesecake for dinner. Yes, that’s it. Dessert for dinner :)

Also I wrote a little song for the event (sung to ‘if youre happy and you know it, clap your hands):

If your boobs are being bitches cut them off!

If your boobs are being bitches cut them off!

If your tits are being jerks, and no longer worth the perks…

Then your boobs are being bitches, cut themn off!

I used to like the girls quite a lot

I used to like the girls quite a lot!

But then they started making threats, like disfigurement and death

My boobs are being bitches cut them off!

Love all of you tonight!!! I hope everyone is cozy and happy and I’ll see you on the flip side!!!

Xo, Sara

Hi there!
A couple weeks back I had a very weird interaction with my oncologist and the radiation doctor

Quick info about my situation- 32F, diagnosed Jan 2026 with TNBC IDC stage 3c, tumor was 8.2cm.
Quickly started keynote 522, tumor shrunk immediately. Last chemo was July 9. Had a double mastectomy on September 2nd, 4 lymph nodes taken. Achieved PCR!! (Today is October 5th 2026 incase you’re reading this in the future)

Here’s where things got weird:
The week after my DMX, I see my oncologist. Same guy I’ve been seeing since diagnosis. He’s excited for me. He’s so happy to see that I achieved PCR and really took some time to get it through to me that this is real and that I don’t have cancer anymore. He said that I should use the word “cured” when talking about my cancer.
He said he has NEVER SEEN SOMEONE GET A PCR AND THEN GO ON TO HAVE A RECURRENCE. EVER. He really hyped me up and made me start to actually feel good about all of this. He asked me if I had made an appointment to talk to the radiation doctor and I said yes it’s today but I don’t want to do radiation and he SAID TO ME so causally that he really doesn’t see any reason why that would be an issue and feels good about my choice not to do radiation

I go from his office directly to the radiation doctor who is in the same space down the hall or whatever. Immediately the vibe is weird and cold. I fill out the same forms I’ve filled out a million times, answer the same questions I’ve answered over and over again. When the doctor finally came in he didn’t even sit down, he immediately and I mean IMMEDIATELY started a monologue about how that study everyone is talking about doesn’t apply to me because of NEW INFORMATION TO ME lymph nodes near my sternum that showed as suspicious on my FIRST SCANS BACK IN JANUARY but never showed again after

radiation, what it is, all the different types, all of the risks, how your ribs can break but “it’s really not a big deal” ???? HUH WHAT
Without even stopping to take a breath so I’m just sitting there like, jaw dropped processing this insane amount of info

Then I start to ask questions. Like,

“you’re saying I have lymph node involvement in my sternum that showed up back in January yet not a single other doctor has mentioned this to me? So you’re telling me my AWARD WINNING CANCER SURGEON didn’t see this?”

And he dead ass said “her area of expertise is the breast and that’s outside the area.”

Me: “you’re telling me that she saw suspicious lymph nodes and just DECIDED to not tell me? You don’t think she would have, idk? Referred me to someone who handles that? But instead ignored it? AND all of the scans I’ve had sense have never shown anything? ANDDDD IVE ASKED HER A MILLION TIMES ABOUT POSSIBLE OTHER CANCER THINGS BC IM NERVOUS???” (I promise I was being polite)

He was starting to get mad at me but I kept asking questions. He said I need radiation because my tumor was 8.2cm at diagnosis and that’s protocol. Oh really? Then why wasn’t radiation part of my original plan? Why is it that every time I discussed radiation with my cancer surgeon she said ITS NOT DETERMINED UNTIL AFTER PATHOLOGY FROM MY DMX HAPPENS?? My tumor had shrunk to literally nothing. It was literally gone before my DMX.

My partner and I were trying to ask him risk percentages and he robotically kept repeating some nonsense about a study from the 1940s!!!! DUDE WHAT THE FUCK???

He then says “your oncologist is worried about a recurrence and that’s why he wants you to finish taking Keytruda”

“No actually I LITERALLY just talked to him 10 minutes ago and he said he ISNT worried about a recurrence at all and said he has NEVER seen anyone get a PCR and then have a recurrence-

“WELL I HAVE.” Radiation doctor raised his voice and interrupted me -totally fine I’m not mad about it but he def showed annoyance that I wasn’t going to be medically gas lit without asking some damn questions. He clearly didn’t know that my oncologist just told me that he hasn’t spoken a single word to the radiation doctor about me or my case so he wasn’t expecting me to KNOW HE WAS LYING about what my oncologist thought

We leave, I’m upset bc of the emotional roller coaster, I was finally feeling hopeful and then that happened. My partner and I both were very much like “wtf was that?? No rads def not worth the risk”

-WE GET HOME AND GUESS WHAT-
My ONCOLOGIST calls me. He has never called me before. He immediately says. “I think you should do it. I talked to (radiation doctor) in the hallway and Blah BLAH BLAH” he kept saying some SHIT about “you handled chemo so well, this will be easy” DUDE THATS NOT A GOOD REASON TO ME???

They can’t give me direct answers beyond “radiation is like insurance” FOR WHO?? Several doctors have said that bullshit to me and every time I say “but it’s not tho? Cancer can still come back” and EVERY time they just stare at me
Maybe insurance for them. But exposing myself to radiation that can cause a whole other type of cancer PLUS all of the other LIFE LONG RISKS it’s just not worth it to me. I’m going to be terrified everyday for the rest of my life no matter what I do.

What do yall make of this? I talked to my old lady chemo friend after this happened and she said she thinks he just wants the business. Others I talk to say it sounds like my oncologist got in trouble for telling me what he honestly thought instead of the corporate thing.
My partner and I both feel very strongly that it’s more than okay not to do radiation. But I want to know what yall think about all of this

Thank you for reading sorry if it’s kinda all over the place