r/LivingWithMBC

I was diagnosed a year ago with de novo metastases in my spine and maybe my brain. Originally, they thought I was 2B and I had a lumpectomy. I am estrogen + and HER2+. Baseline PET revealed 2 lesions in spine and baseline brain MRI revealed 2 very very small spots in the lining of the brain. I have been on Enhertu, Zoladex, Tamoxifen, and Xgeva. Today I had an appointment to go over my latest scans and I am NEAD! Spots in spine “healed”, no
new activity anywhere and my brain had been no change since the beginning and I have had zero expected effects from them so they now believe that they are nerve sheath tumors that are benign. 🎉 Hoping the treatment continues working for a long time. 🙂

Hi, my husband encouraged me to share my story because I’ve been encouraged by all of you sharing so here I go.

In 2022 I was 26 and diagnosed with stage 3 TNBC. I did the usual treatment, double mastectomy, and my pathology report came back clear and I was considered “in remission”.

In 2025 at the age of 29, I took the signotera (spelling?) test and was told my cancer was back. Triple negative metastatic breast cancer in my lymph nodes. My scans looked like a firework went off in my chest. I was told to make a bucket list and basically good luck by 2 doctors. A 3rd doctor gave me hope and said, I’ve had patients live with this for years. I was fortunate enough to get in at MD Anderson quickly with a 4th doctor and they truly changed my life. I started on gem carbo and my tumors started to shrink. My counts dipped and my scans were looking good so I was moved to Keytruda.

At the end of 2025 the Keytruda failed and I had 3 new masses pop up under my collar bone. My onc started me on Trodelvy and I thought “this has worked for millions of people, why not me”. I challenge you all to take that mindset, I told myself I would not loose.

Fast forward 6 infusions and I had a 99% reduction in all Mets. I did 6 more infusions and now my scans show nothing. My doctor has decided in NED! Something I never expected.

I start 5 rounds of radiation next week to hopefully prolong my NED status and fingers crossed I stay that way.

I have goals to start a family one day, continue my career, and love my husband as long as my body lets me. You can do this too. Keep your head up, you will not loose♥️

Hello!

I have been living with mTNBC since Oct 2022. Started as stage 2… 14 months later, turned into stage 4 with lung Mets. After 3 cancelled surgeries, one lung met multiples into 26 and surgery was cancelled. I returned to 8 more months of chemo. I then was able to have a lobectomy last summer, got married in the fall and then started back at work in January. This Feb, we discovered brain Mets and I have a craniotomy and gamma knife. I’m 41 years old.

After the brain Mets, my friend organized a GoFundMe and it amazingly raised $42,000 (I live in Canada, but have spent about that much so far in complementary treatments and fertility preservation). The money will go towards the variety of treatments, services I access to complement medical care.

Long story short, we have also been closely building a house at the lake over the period of ten years. We always thought we pick away at it slowly. My husband now wants to RUSH the build and instead now wants to sell our house and use the equity to fund the new build. I believe he mainly wants to do it FOR US because he is scared about the future…

He doesn’t like the idea of the GoFundMe and doesn’t want anything to do the money (he told me two weeks after the GFM that he wanted to sell the house). I put the money into a separate bank account to use purely for cancer related costs. HOWEVER, I’m very worried about optics and what people may think… does it “look bad” to sell our house immediately after a GFM and then build a house? I know it’s not where the money is coming from, but I am so insecure about judgment.

Thank you so munch! I’m losing sleep over this and feeling very stressed.🙏

I have the chills reading it. Maybe this is some hope for us with mTNBC

Ive been living with the unwanted visitor for over 6 years and had a few lines of treatment. Im 57 and before mbc had no medical or mental health history. Usual feelings of up and down due to life, nothing clinical.

Since mbc and moreso in the last 3 years Ive changed so much. Maybe its the fatigue, lack of oestrogen, accelerated mortality. Whats changed?

In winter 2025 I had CBT for burnout and anxiety. My mum had been diagnosed with advanced dementia and I am the only child in the country so left to sort it all out.

Ive stopped being a people pleaser. My MIL and SIL didnt contact me but would send gifts through the post without any thought that I dont want more stuff. Any talk of how I was got quickly shot down and subject closed. I ran out of tolerance and now am v v v low contact..

Ive very few friends now. I got fed up of the breadcrumbs my friends sometimes throw me.

Ive got a fear of joy. I think if I do selfish things and enjoy myself, ill run out of time quicker.

Ive a mild fear of going into my own small yet lovely back garden. I worry that if I start enjoying the garden, ill die quicker..

I massively miss my parents. My mum has dementia and my dad died when I was 31.

I feel disconnected.

Can anyone relate?

Happy mother's day to me.

I just got a CBC without any abnormal results. It has to have been at least 10 years since that happened. Weird.

Hi everyone, I’m at ER currently. Realized after nap today my port was infected (there’s puss) and I started developing a fever. Once I got to ER they said my temp is 100.1 F. I’m a bit scared and bummed out.

Initially I had plans to shave my head today and eat my last sushi before chemo. Wanted to shave my head so I can lose my hair on my own terms. My mom is supposed to make it into a wig for me. I’m supposed to start chemo tomorrow but now I’m not sure that’s still happening.

This is my first set back in treatment. I had advocated to have it looked at three times. There was no puss at the time but knew something was wrong. My neck took like 5 days to heal, but my port was still “healing”. Got the procedure done April 28th.

Does anyone have any stories similar to this? unfortunately i can’t give anymore answers than this because my ER is at max capacity. I’ve been here for 3+ hours and I’m still waiting for bed :(

I know I did everything I could to catch a complication as soon as possible. It’s just disheartening to know I may be delayed treatment or worse, may have port removed and replaced.

I’m 30 and a few weeks ago I was diagnosed stage 4 in my bones and liver. The cancer damaged my hip bone so bad that I can barely walk and mostly bound to a wheelchair. It’s Mother’s Day today and I have two small children that just want me to come outside with them and run around and play with the sprinkler and in the sandbox like I used too but I’m always in so much pain. I’m exhausted, weak, in pain. I did radiation on my hip, I just started kisqali today. I’ve been taking anastrazole and got the zoladex shot a few weeks ago. I just want to be the mom that can pack my kids up in the car and go to tractor supply or the playground or a water park but instead I have my toddler sitting infront of a tv all the time while I lay in bed. I am heartbroken in so many ways I can’t even describe the pain and guilt I feel for not being able to play with my kids like I used to. Will I ever get better? Will I ever be able to take my kids out to have fun? Or am I just only getting worse until I die.

Diagnosed HR+, HER2+ inflammatory breast cancer in October 2024. Just completed 8 rounds of neo-adjuvant chemo, surgery, radiation, and 14 rounds of adjuvant Kadcyla. Found out just 1 month after finishing Kadcyla that I have 1 brain met and 3 liver mets. My oncologist has not yet put me on any endocrine/hormone therapy.

Has anyone else been in this situation?
What treatments did you have?
How long do I have?

Thanks in advance for sharing your experiences.

Feels like having “hope” isn’t worth it anymore. I try my hardest to remain positive & grateful, but it getting harder day by day. I’m 26 & honestly I can’t imagine dealing with this disease the rest of my life?? It truly looks like everyone has it better than me. Yes I know compassion is the thief of joy, but holy cow. Everyone has hair, great job, apartment/houses, traveling, husbands/boyfriends , babies.. and me? CANCER, hot flashes, invisible sex drive, living with my mom, losing hair, brain fog, skin problems, ANXIETY.
Not to mention I feel so bad that I can’t properly show up for my mom tomorrow for Mother’s Day. Everyone wants me around, but I don’t want to keep dealing with this. I feel like a burden. Putting on a mask just to keep everyone happy. I pray everyday that this goes away. It’ll be a year in July. I don’t even want to think about doing this for another year let alone another month. Sorry I know this isn’t nice but no one gets it.

Hi fam. Today marks 5 years since I got the shocking results of an MRI that showed mets to my spine leading to a diagnosis denovo MBC (ER+, PR-, Her2-). On the surface, there’s so much to be thankful for — I have a great doctor, good support network and, most critically, my first line is still effective. I’m healthier and stronger than I was 6 years ago.

But this day marks my “if only” day — if only I could make it to the 5 year mark! If only I could see my youngest turn 10 (which she will tomorrow)! If only I can see my oldest turn 16! It feels a little as though, now that I’ve reached this critical milestone, anything more is just icing on a cake? And that feels…heavy? I wasn’t expecting this heaviness today and wanted to come be with the only group I’m a part of that might ‘get it’. I have no plans to mark this day publicly or with my family, but maybe I should? My “I Definitely Thought I’d be Gone by Now Day”? That feels morbid and I don’t particularly want to put my loved ones through that, so I feel like I should just let this day pass with my own private acknowledgment.

I’m a big fan of cognitive behavioral therapy: my thoughts become beliefs and translate into actions which further impact my thoughts and the cycle continues. Today will, in part, be spent reframing my thoughts: my disease is controlled (NEAD and negative Signatera), there are other promising lines of treatment, none of us know the number of days we have, etc.

These past five years I’ve traveled extensively, gone back for a second masters degree (representing a fun career pivot), watched my kids grow and develop and mature, practiced CrossFit and strength training for 2.5 years. While the first year was a traumatic blur, since then I’ve truly lived. I have a new laser-focus on the things that are important to me and manage to step out of environments that push me into unhealthy mental spaces. Which is to say that MBC has made me better at living. Far better, actually.

Anyway - if you’ve read this far. Thank you. I’m with you and I really value this group. I’d love to hear if there are small (or big!) symbolic ways you mark milestones as an MBCer?

Hello! I recently had progression on my bones, mainly my ribs and spine. My ribs have been causing excruciating pain! I can barely lay down at night it hurts so bad. My oncologist took me off all cancer medication until we get the results back from the guardant 360 test. I’m currently taking morphine every 8 hours and hydrocodone as needed. What is everyone else doing for bone pains? My Doctor recommended I do radiation for the pain but I still owe the radiation dept close to $1,000 from my last treatment so they want me to pay that off before starting new treatment and I’m not able to do that at the moment.

Lately all I read about are the success stories for hormone positives and all the new meds etc. I am so happy for all the progress for them I just really wish there was more positive things happening for triple negative stage fours. I’m so scared all the time and I feel like everyone just forgets about us with mTNBC because it’s too painful to acknowledge that we don’t have many options. I have my really positive days and my really sad days. Today is definitely one of the really sad days. I’m so sick of chemo and knowing I’m on this “for life” however long that may be is so scary. I have this awful taste in my mouth 24/7. I am tired 24:7 and scared to work out too much because I’m scared to break or sprain something. I’m gaining so much weight because I’m on prednisone everyday and i don’t even recognize myself anymore. No hair anywhere on my body, severely swollen face and body. I look like a lunatic all the time. Ugh im so angry that we are all here. I want more options for us !!!! I’m Sorry I just needed somewhere to vent today.

Hi all, so happy to come across this forum, Just diagnosed with liver mets and waiting for an appointment with the oncologist. I am 58 and had Her2+ breast cancer in 2020 and again in 2024 and now this. I am scared witless - any good advice on how to handle the fear?

I have severe bone pain and just started taking kisqali. I’m scared if I ask for pain meds they’re going to say no due to interactions with kisqali.

Since I had my first positive biopsy in February my breast has gone from looking totally normal to now I can see and feel lumps and my nipple has inverted. This feels like a really fast progression - I haven’t even fully started treatment yet. I only had my first Zoladex shot two weeks ago I will be starting kisqali and Letrozole this week. I can’t get over how it only took 2 months to go from normal to this.

Have any of you seen any reversals after treatment? Or improvement? The rate of change is really freaking me out and I want to know if this is something that will resolve!

hi folks. what treatment have you done for metastatic TNBC? how long, what worked, etc. been cruising old posts and want to hear current new new today shit. (also i know someone just posted about how few options we have. hence, i am starving to hear what the heck ppl are doing).

about me💅🏼: diagnosed stage 3 TNBC in 2025, did keynote 522/SMX/ALND/rads all good response. was starting capecitabine and boom brain met surprise 🫪 had SRS and a crainy, no idea what treatment plan is next 🛣️

thx and i love you all! this sub is a joy to belong to.

☮️💟☯️

I am really in a very difficult position and could truly use some hope and perspective from people who may have gone through something similar.

My mom was diagnosed on December 9, 2025 with extensive bone metastatic breast cancer. She previously had Stage II breast cancer in 2024.

We did genomic testing and found a PTEN mutation, so since February she has been on Fulvestrant + Truqap. A PET scan in March showed progression, including dural metastases, for which she recently completed radiotherapy. At the time, the oncologists told us the March scan may have been done too early and that we needed to give the treatment more time.

We waited until now, but the new PET scan unfortunately showed:

• increased number and activity of bone lesions,
• new thoracic lymph nodes,
• and possible chest wall recurrence.

During these months, she also went through:

• right femur surgery after a pathological fracture,
• multiple radiation sessions,
• and a focal seizure related to the dural metastases.

Despite all this, she is still functional, interacting, and there are still no liver or lung metastases on the scan.

We are emotionally exhausted and trying to understand what realistic hope still exists from here. We are not willing to pursue traditional IV chemotherapy.

Her subtype is:

• ER positive (low, around 20%)
• PR negative
• HER2 ultralow

Could therapies like Enhertu still be meaningful options in this situation? Have others seen good responses after progression on endocrine + targeted therapy?

I would really appreciate honest but hopeful perspectives right now.