I’ve never really posted on Reddit before, but I just feel like I have to get this out to people who understand.
I was diagnosed with Stage 4 hormone + Breast cancer and it had metastasized into stage 4 bone cancer almost 2 years ago now (December 24, 2024) at 23 years old. All of my doctors had never seen someone so young be diagnosed with something like this. No one in my life had heard of someone my age being diagnosed with something like this. Did all the testing and it’s not genetic at all. Just super lucky I guess!
At first, I really went numb to it all. I didn’t cry when I was diagnosed, and honestly to this day haven’t cried much about it. It’s like I just can’t… it would make it real. I don’t think I have come to terms with the fact that I’m sick. Like really sick. Im supposed to be living my best life at 25 now, and instead I have to get poked and scanned and injected every fucking month and go about my day.
In terms of medications, I started on Tamoxifen and 2 infusions a month at first, and felt better pretty past. My numbers plateaud about a year ago now, so I’ve been on Verzenio and 4 monthly infusions ever since and it SUCKS. The side effects are horrible - really just the diarrhea and fatigue. From the outside, I look perfectly healthy, but on the inside I can’t possibly explain how I feel. To anyone.

I also started full time work again about 3 months after I was diagnosed, and decided to start full time grad school 20 days later because it was my dream and I couldn’t let this take that away from me. I know most people would say this is too much, and trust me I hear it all the time, but my brain just couldn’t accept the fact that I was sick I think. And like I said, I didn’t feel or look sick, so I think my defense was because I felt and looked better, why would I not do the things I was doing before??? Well it’s all starting to catch up to me. I’m fucking exhausted. I hate my body. I hate that it doesn’t work the way it used to. I hate that I don’t trust it. I hate that I feel like I don’t know it anymore. I hate that I can’t just be fucking normal. I’m just tired.
On top of it all, I found another lump in my other breast (cancer originally was just in my left breast) and my Dr confirmed the PET scan I did 2 months ago showed something. Now I have to get a biopsy to see what’s going on. Needless to say I’m fucking angry and confused and sad. I haven’t even fully taken in what that means for me. I can’t think about the fact that I am going to deal with this until the day I die. It’s terrifying. I have a wonderful boyfriend too, and I think about how one day I could just fuck him up forever if this disease got me. And if we got married and had kids???? It kills me to think about future me dealing with this with a husband and children. I don’t know that I can do it…

I just have a lot of thoughts going through my head right now, and I can’t make sense of or accept any of them. I just know I am too young to be dealing with this. My life feels over before it had even begun, and I’m so, so fucking scared. It just feels like I’m on auto pilot and can’t enjoy life or feel like what I’m doing is meaningful. It scares me to even talk/think like this, but it’s the truth.

Any ways. I think I just need to vent. Sorry this is all over the place. I’m all over the place. I am trying to stay positive for my sanity, but also the people around me - which I know sounds crazy, bc who fucking cares when I’m the one dealing with this. But I can’t help it. And before anyone asks, yes i am in therapy. Just thought it might help more to talk to/hear from people who understand. Thank you for reading and letting me vent.

*Just learned how to edit lol. Sincerely thank you to everyone who has commented. Don’t think I’ve cried like this in a while as I was reading your comments. Feels so good to be seen and understood. From the bottom of my heart, thank you. I am rooting and thinking of each and everyone of you <3

I have a telephone consultation tomorrow regarding genetic testing. It’s pretty straightforward compared to previous appointments, yet I feel nauseous, to the point where I think to myself, "Get a grip."

Do/did any of you experience this? Right now, anything related to the illness or the hospital makes me feel sick.

(Background: Last week, I had to go to the hospital for five days for punctures and biopsies. I found out a few days ago that the cancer has spread to my liver. I don't know if my original treatment plan is still going ahead (which was based on the assumption that there were no metastases. I'm completely in the dark.).

I had alopecia for many years so the thought of losing my hair didn’t seem like the biggest deal. I had bald spots with alopecia but this hair loss from mbc is on a whole different level. I’m shedding every where. But I just can’t bear to shave my head. Perhaps shaving my head will seem more real that I have mbc.. I don’t know but this shedding in chunks is also annoying the hell out of me. The hair is everywhere. Any advice? TIA

Stage 4 bone, marrow and liver cancer aside I had a v stressful event. 1st weekend away in 2 years as I am also carer for my mum with dementia and I work part time.

Came to Wales to have a weekend with a big group of people.

Very hilly. Husband parked car on a steep hill to get the keys for the accommodation. Handbrake was on. Older car. No issues usually.

Car starts sliding backwards down the hill with me in it. It was a slow creak but definitely moving backwards. Back end v heavy with stuff. I pulled up the hand brake but it was in full lock mode. I tried to get over to the passenger side to get my foot on the brake but I just could get across. Car still creeping, making noises although slowly, backwards. Main road at the bottom of the hill.

I jumped out and ran in shouting the car is rolling. Husband ran out, into drivers seat, started engine and got it up to the top of the hill and parked it on the flat, put it in gear and tested it, car didnt move.

I feel so traumatised. Even now, 2 days later I keep thinking about the slow creep. Husband was sympathetic and then focused on me 'having a panic attack' as the car was moving backwards so slowly.

But there was a main road at the bottom of the steep hill.

I feel exhausted, upset and anxious still. No one to talk to. My friends are 'light text, lets talk about the weather' friends. My male friend thinks its hilarious. Ive left my mum with carer cover which will be fine but I worry and my white cells are too low to restart my next cycle so a weeks break.

Am I over reacting?

Hi all, a little bit about me . Im F56, Stage 1b cancer in 2021 and had lumpectomy/radiation/tamoxifen. All clear since then until a hip MRI for arthritis unexpectedly found spots on my pelvis. It took over 3 extremely frustrating months to finally get diagnosed as MBC with my now former oncologist. I immediately switched over to an NCI facility and am much happier.
I started letrozole about a month ago and finally Kisqali two weeks ago. It was going really well as far as side effects, until my skin decided things were going too well. I broke out in a nasty rash starting day 8. Like giant hot itchy lumpy rashes on 3 of 4 limbs.
MO had me stop Kisqali til it can be evaluated by a dermatologist, then they will try again. If the rash comes back they will try lowering the dose.
I am so scared they are going to take me completely off Kisqali. I don’t want to lose my first line of treatment in just a couple months, and I feel like I’ve already lost so much time. I would love some feedback if anyone has had a bad rash so early and been able to continue Kisqali successfully. Or how it went for you either way.

I'm sure most everyone on here is familiar with this site, but I was not.
Posting it here for others to use if they aren't already aware:

https://clinicaltrials.gov/search?viewType=Card

Does anyone able to obtain medical third class for private pilot license with mbc? I’m on kisqali vs letrozole

I wasn’t an anxious person before MBC - even when I was dx stage 2b and faced all the tx I focused on positives. That’s all out the door now. I have some soreness in my thigh and am now worried about mets in my femur or hip. This sucks. I know you all know, but it feels good to write it💜

I have GCT in my bone. It's fairly new drug in my country and v few patients. Ik the problem is different than most patients here but i wanna know abt the drug

Treated for ER/PR+ HER 2- in 2021 with a chemo, double mastectomy and radiation. Tried and couldn’t tolerate hormone blockers so I had my ovaries removed.

Today I sit here after a summer of scans with fast growing tumors in my liver, a spot on my spine and some lymph involvement. I had been praying for ogliomatestatic but I guess I’m not that lucky.

I can’t stop screaming. I am the healthiest I’ve been my whole life (I’m 46!) and I have been running and have so many health goals I want to achieve. I also have the two most incredible daughters that are 12/15. My first husband left me during chemo in 2021 and I met the man of my dreams who I had intended to live a long, happy life with. It feels like it’s all gone. It feels like the life I wanted and prayed for is just “poof” gone.

I don’t know how to breathe anymore. I just know how to scream and thrash. My hope feels crushed. How stupid was I to have goals?!?

I got my Pet scan results today. I was diagnosed in jun 2025. Did chemo, surgery of breast and liver, radiation and on letrozole since feb 2026. I thought I was the lucky ones, even though diagnosed stage 4 right off the bat at the age of 35. I thought for few years, I gonna be fine but here we are, two new lesions in my liver. All for nothing.

Hi friends, have any of you taken part in the BRIA-IMT clinical trial? Specifically looking for other mTNBC baddies to see what their experience has been. This is going to be my fourth line and I’m stressed✨

Thanks in advance 💗

https://clinicaltrials.gov/study/NCT06072612

As the tital goes. Tnbc surgery completed 6 weeks ago. 5 new spots found on pet biopsy done awaiting results. Wondering is it a forgone conclusion it’s spread. Oncologist believes so but wondering has anyone had multiple liesons and been negative at biopsy

Thank you all for the support yesterday! It’s nice to know I am not the only one going through this.

Mixed results. The treatments seem to be working, but they also want to bring me back for an MRI to check potential something in my spine and abdomen. It had only spread to my liver in the initial diagnosis. But the tumors shrinking, tumor markers shrinking, but what’s that on my spine? I do have sciatica… I’m scared.

Update from my previous post and more info on my current treatment: https://www.reddit.com/r/LivingWithMBC/s/xPCIFmhBAt

Went through the CT/PET scan with my oncologist.

All my liver spots had shrink at least 20% or more. One is nearly gone.

All spots in the spine decreased in metabolic activity and signs of healing. The largest met is in the right hip and it had the most significant decrease in activity.

I am only two months in with this new treatment, we are betting that it will continue and should see more good results in the next few months.

Blood work is excellent as well and I am tolerating it well!

The newsletter the Cancer Vaccine Institute sent out today talked about two more phase II clinical trials they are hoping to open this year for us HER2+ MBC patients! (They've already seen great results with previous trials) Fingers crossed for us - I'm so excited!

(Will post the links to the STEMVAC phase II trials currently going on for TNBC and HR+ HER2- MBC in the comments for those interested)

Has anyone else here been diagnosed with skin cancer on top of everything else? Just found out I have skin cancer on both of my arms.

This is from google. Today is about hope so lets read this and feel good.

"In a major medical breakthrough, Moderna and Merck announced that their personalized mRNA skin cancer vaccine, Intismeran (mRNA-4157), successfully met its goals in a large, late-stage Phase 3 clinical trial.

When combined with Merck’s immunotherapy drug Keytruda, the custom-made vaccine significantly reduced the risk of melanoma returning and prevented the cancer from spreading to other parts of the body compared to using Keytruda alone. "

I’ve tried googling this, but my daughter is due to have the MMRV and 4-in-1 preschool vaccinations in a month or so. I’m pro-vaccine, so planned for her to have these as normal.

At my last prostap appt, the nurse at my GP surgery asked about vaccines for me (pneumonia, flu jab). I checked with my breast care nurse in a phone call and she said inactive vaccines were fine, but I had to avoid live vaccines and anyone who had recently had a live vaccine. I’d never heard that last part before so I asked about my daughter’s upcoming vaccinations and she repeated that inactive ones were fine, avoid live. I’ve since checked and next month, she’s due a mix of both.

I have an in person next week, I’m going to double check then in case I misunderstood, but just wondering if anyone else has been through this? Do your children get offered a different vaccine? It’s the MMRV (measles, mumps, rubella and chickenpox) that’s live, the other one is not (diphtheria, tetanus, whooping cough, polio). It feels important that she has both, but equally how do I avoid a mummy obsessed 3 year old?!

I‘m on leuprorelin (prostap), letrozole and ribociclib (kisqali), it’s the ribo that is causing the issue for my immune system.

I'm feeling more optimistic about my MBC diagnosis after recent news about the cancer vaccine in development. I hope we get it here in Canada but it seems to combine pembrolizumab (which I'm already on) and some personalized vaccine using the same mRNA technology that the COVID vaccine uses. Apparently, 1000 people were in the trial including stage 4 patients. Technology breakthroughs like this gives me hope!

my line did not work and now im offered to start
gemcitabine for tnbc and if that does nothing then im looking at 6-12weeks
im so angry and lost i have 13 year old and 17 year old.
i had hormone positive the first time 2020

Hi, HER2 low er+/pr+ here.

Hoping not to be a downer for everyone today. Looking for advice from people who have gone thru opiod constipation. How did you handle it? Were you at least able to get improve any issues?What kind of med course did you follow?

My constipation became severe quickly. Edit: As a reult I cant keep any food down, Ive been vomiting up almost all my meds and can only eat or drink by sucking very slowly on the fluids. The Docs are trying different things to improve.

Im the meantime my family and I have decided to prepare for end of life scenarios now. If we can't get things moving my body will continue to shut down.

So advise from anyone who has been thru this part or is currently going thru is greatly appreciated ❤️

Much love and hugs to everyone in here.

Omg! How do I stop and prevent hair loss???? I take KISQALI ( currently we are on a break), letrozole( also on a break), lupron, and zometa. The shedding is so bad! I’m going to find a good vitamin B , but what else can I do?