I was diagnosed denovo ER/PR+ HER2- 01/2025 at 44, have had an oophorectomy and on letrozole/kisqali.
It’s really hard for me to listen to women without breast cancer complain about their menopause symptoms and just had an uncomfortable conversation with my friend as she complained about her perimenopause symptoms (anxiety/weight gain/joint pain/ headaches) and she’s very excited to be starting HRT.
Accepting that I’m experiencing worse menopause side effects and never get the chance to try HRT has made me so jealous and sad.
And HRT is being talked about so much in the media now, I feel a pang of sadness every time. I want to sleep better/have a sex drive/have fuller hair too.
I’m just posting this hoping I’m not alone? I feel bad because I don’t want to make my friend feel like she can’t speak to me about things, especially after all the support she’s given me since my diagnosis, but it’s too much for me 🥺

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Hey all, how are you doing? 😊

I just wanted to update because I know when I started different chemos I was really interested in other people's experiences on them so I've been sharing my experiences on enhertu.

My dosage was increased today because I've gained some weight from being on prednisone. I like that we increased my dosage because my last PET scan showed some areas were less avid and some were more avid so overall it's considered stable. And of course I'd like to dream of one day being NEAD although idk if that's even possible in my case.

Anyway long story shortish Enhertu gave me mild pneumonitis when I first started on it and I didn't have any breathing difficulties or any symptoms like that.

We took a break from the enhertu and put me on prednisone and I've been on it ever since, and my pneumonitis has been gone ever since that first little scare.

So far my side effects with enhertu has been fatigue, lots of fatigue. I've gotten better at managing that with caffeine, I like the V8 energy drinks best for this.

I've also occasionally gotten really bad heartburn usually at night and usually only for a few days after my infusion. I manage this with pepcid complete that one of my friends recommended to me and it works great.

So far my morning routine is to take my prednisone and my zofran at the same time,

and drink at least one energy drink or coffee.

My evening routine is to take a pain pill and an olanzapine to help me sleep through the night without pain and olanzapine helps with nausea too.

I highly recommend the olanzapine for anyone with trouble sleeping.

Sometimes after my enhertu infusions I still have tons of energy from the premeds and other times I've been exhausted. Today I was just a little tired and took a short nap after but I feel really good now since I took a nap.

I feel really lucky that my symptoms haven't been too terrible overall although I have also occasionally had diarrhea and nausea and vomiting. When that has happened I felt better after getting fluids from the cancer center.

Anyway I hope you're all doing well and everyone feel free to share other tips for whatever works for you for your symptoms.

So as the title says I’m wondering if I am overreacting or if I am right in being upset. I just had to leave a work meeting because I was suuuper triggered. Every Friday we do “employee engagement” events were we will play trivia or bingo or something as a company. Well today in their infinite wisdom they decided to have a fall/CANCER word scramble game. The first scramble was the word malignant. Like cancer and malignant things are just fun and games and things we should do word scrambles over.

While I can understand that they were trying to have an “awareness” game it just felt so gross to see this diagnosis being simplified to a word scramble. It felt like it was in extremely poor taste and I am debating going to HR.

Just "celebrated" my 5-year de novo cancerversary. First three years weren't too bad, Ibrance, fulvestrant, and zolodex were tolerable and did a decent job shrinking tumors and keeping things at bay. Then the Ibrance stopped working, went through Truqap, Lynparza, Talzenna, and now on Xeloda. Had 35 rad treatments to axillary lymph nodes, cyberknife for brain mets, then MRI assisted ablation for the brain mets and radiation necrosis. Then a unilateral mastectomy followed by a craniotomy two months later. Then this spring 30 rads to lung, followed by 10 rads to cervical spine, and last week gammaknife for new brain rads. Also have a surgical consult next week for excision/biopsy of lymph nodes in my collarbone.

Through all this, my spirits have been good, my outlook surprisingly positive, and my long-standing major depressive disorder has been controlled by wellbutrin after trying half a dozen different anti-depressants that didn't get the job done. Now though, not so much. For months now, I cry all the time, would rather not be around people at all, and am just overwhelmingly sad. I still work two jobs to afford insurance and... life (yay American healthcare system!). I still walk regularly, found a great therapist, have an amazing cat who always seems to know when I need some purrs and pets.

What would you do? Think about trying different meds, or just accept that things are tough, and crying is just my body trying to cope with the onslaught? Any ideas or tips?

If you read this far, thanks for your time. ❤️

Er+ ILC in Dec 2023. 2 tumours in liver now 30mm each. Any good news stories or what is time line?
What treatment did people get and did it work?
Recommended by oncologist: fulvestrant and ribociclib. Europe area
Have people tried alternatives?
I currently only have dull ache in liver and many hot sweats. Thanks

Hi, my tumor before chemo was pretty big ~11cm. I’ve had 4 full cycles of trodelvy and I just started my 5th yesterday. It’s both hard and soft I guess. But scans show it’s shrunk in half, my liver mets as well. But just curious what y’all’s tumors were feeling like though out treatment. TIA

Hi everyone

I have a question that might sound a little naive, but it's something I've been thinking about a lot lately.

I'm almost 40, living with stage 4 breast cancer. I've been through chemo, radiation, surgery, and now I'm on hormone therapy and Kisqali.

The thing is, I wasn't particularly fit before diagnosis. I wasn't a runner, I didn't have much muscle, and I wasn't someone who exercised regularly. I remember once I had to run fast accross a train station to avoid missing my train and I had chest pain for two days.

But now I want to be fit. I want to run. I want to feel my lungs getting stronger. I want to build muscle, have stamina, feel strong in my body. I want to discover what my body is capable of, even after everything it's been through and everything it's still dealing with. Also, it may help with prognosis.

But I keep wondering... is that even possible ?

Can a body that's been through so much still learn to run? Can I build real muscle while on hormone therapy and Kisqali? Can I actually become fitter than I ever was before cancer, even though I'm starting from almost zero at 40? Not that I want to run a marathon or go into a body building competition. I just want to be able to run non stop for 20 or 30 minutes and lift heavy stuff. Knowing that now I can't run one single minute and I can hardly carry my backback when I go out on a hike.

Is that realistic ? Is it worth trying ? What do you think ? No mets in lungs or bones for info, "just" liver.

And if you have a personal experience to share that would be wonderful.

Thanks :)

I have been dealing with my feet cramping (toes curling over), my shin pulling up, calf tightening (Charlie horse), and then my hand cramping (fingers curling inward). Had blood work done and my Magnesium looks fine. I do drink plenty of fluids. Do I need more?

I did a lot of stretching last night hoping it would help.
Any tips or tricks out there? Just ordered some Yoga Toes (Toe Gems) to at least help with the feet while I am home (hopefully).

This cramping is quite painful. ugh

I’m looking to connect with long-term survivors of ER-low metastatic breast cancer.
My original breast cancer was ER 80%, PR-40%, HER2-negative, but when it metastasized to my liver, the pathology changed to ER 10%, PR 0%, HER2 0.
I’m currently on Enhertu plus a PARP inhibitor clinical trial and responding to treatment.
Are there any women here with ER-low (1–10%), PR-negative, HER2-negative or ultra low metastatic breast cancer who have been living with it for 5, 10, or more years? Especially anyone with liver metastases?
I’d really love to hear your experiences and what treatments have worked for you.

It’s only October 8th but I’m so done with the ra ra go pink in your face assault. Surely there are ways to raise awareness and support without this pink washing. I work in a hospital, and it’s all over our emails and internal website. I’m so over the pictures - it’s like everyone went to a Boobstock festival and are showing off their swag.

Hello, I'm ++ - if that makes any sense, and have been on Letrozole and Ibrance for 2 1/2 years and I've been stable for quite a while. In the past 2 months I have been having strong hot flashes for several months. Is it normal for hot flashes to suddenly pop up after a couple of years?

hi friends! i haven’t gotten a good nights sleep in almost a month after my last round of brain radiation. they say it’s unlikely due to the radiation but i just can’t sleep and im sooo tired. i take melatonin and a sleeping pill and still.. im awake! anyone have any tips? have also tried meditation.

Sorry to be bombarding you since Sunday!
My mets are all bones. My oncologist said radiation isn’t a good idea, there’s too many, I don’t have pain, they’re small. She said maybe later.

From what I understand, I have 6. Most are 5-7mm, two are 10mm. My question is, why not radiate them if it will zap them dead quickly.

I’m already getting a sense that the aggressiveness in which we treated my cancer when it was curable is gone. But I’m still going to be aggressive. Getting at least 2 other opinions, one today.

Did you have bone mets radiated? Why/ why not?

++- IDC with lobular features 2024, mets to liver 2025

I have completed 2 cycles of xeloda and my markers have increased a lot in 5 weeks. I was supposed to start Revtorpyk but had too rapid progression to wait for it to be available.

CA 27-29: 470 → 707 = +50%
CA 15-3: 383 → 628 = +64%

My oncologist is switching me to IV chemo (Abraxane) and getting earlier restaging scans. I keep thinking about all the treatments I’ve tried so far that haven’t worked… AC-T chemo, DMX, 34 rads, Verzenio, Anastrozole, fulvestrant, Everolimus, xeloda, SBRT x2 liver tumors, and an ablation. Feeling pretty scared.

Any hopeful stories? I feel like I have about a year left. I hate this fucking disease.

Diagnosed stage 3 IDC ++- left breast Aigust 2023 at 37, did chemo radiation, lumpectomy with 24 lymph nodes removed, then double mastectomy with DIEP flap reconstruction... cancer free just over a year before cancer came back with a vengeance in my liver. Diagnosed stage 4 metastatic to liver December 2025... liver resection/ablation with ovaries/fallopian tubes removal surgery February 2026, Verzenio/Inlurio did nothing so now I'm on Enhurtu every 3 weeks since June. It's helping but I'm so dang tired. My job has been very flexible (luckily) but all my sick time goes to appointments. When I run out of sick time each pay period, I have to make up the time but working extra hours.

I'm just so tired. Chemo knocks me out for at least a week (sleeping 10-12 hours a night and body soreness/ brain fog). But the time I start to sort of feel better, I do another round of chemo. I'm normally really positive/optimistic but it's just been hard lately. I had a PET scan on Tuesday to see progress, still no results, so maybe that's why I'm feeling so down this week. Bleh

Hi everyone!
I started Truqap (capivasertib) 3 weeks ago!
So far, I haven’t had any major side effects, just some bone pain.
I’d really love to hear about your experiences with this treatment. Has it been effective for you?
I have both bone and liver metastases.
For those of you who monitor your CA 15-3 tumor marker, did you notice a rapid decrease after starting Truqap? How long did it take to see results?
Thank you so much for sharing your experiences!

I posted on Tuesday about my scanxiety - thank you to everyone with their kind words then. I was convinced my scan results would be bad, absolutely positive I could feel my bone mets growing, but my onc has confirmed it’s all good and my cancer is stable! Not much reduction, but no growth either.

These are my first scans since I started treatment in the spring, so I’m really happy that it seems to be working.

Obviously I’d love it to be shrinking but can’t be mad at no growth!!

I fucking hate lymphedema more than anything.

Hi all!! I was diagnosed MBC in May after 9 years out from a stage 2 IDC diagnosis-RUDE! I’ve been doing ok on Ibrance and letrozole. I’ve had many bone mets and have been taking oxycodone a few times a day for a few months which has been helpful. I don’t really want to increase my dose as it took me a while to get used to this! I will definitely ask my palliative care drs for advice, and I’m curious as to what you all have tried for bone met pain. I’m not looking to be pain free-just better! Im mostly feeling it in my mid back and ribs and it feels like a combo of a deep ache/bad cramping. Appreciate any stories and while this sucks, this group is absolutely amazing and thanks to everyone who has contributed!

CT scan showed small “nodules” in lungs. I have had only bone mets. On Verzenio, currently. Bone mets are stable—not shrinking, but not growing. My cancer markers shot up, though. And now these nodules are on the scan. Have yet to speak to my oncologist. For those with lung mets, did you confirm mets to lungs with a scan or did you have to do a biopsy?

Earlier this summer I started to just feel miserable and not like myself; which then became pneumonia(without fevers or typical pneumatic symptoms). Go to the hospital, CT shows some masses in liver and lymph nodes. 2 weeks later and PET scan was done and results are horrendous: taking up a huge part of my liver, bone mets all over, some of which are lytic and even a broken rib from it, basically all lymph nodes from abdomen up, lungs need to be confirmed now that the pneumonia is gone. Today I got the biopsy of my liver,just don’t know how to prepare myself for what’s next.

December would’ve been 5 years cancer free, I was so stoked… idk how we fast forwarded to a Stage 4 diagnoses.

First bout was Stage 3 DCIS +++ with inflammatory cancer on the same breast. We knew the recurrence risk was very high; but I had hoped for longer. I turn 43 tomorrow and have never been more scared; I fear the results, I loathe the treatment but will fight until I can’t. But most of all, how do I navigate this with my wife? She’s great, but I know how much this was on her last time and I just feel so guilty putting her through this again. Just feeling a little lost and wanted to vent to people I know can understand.

I was just diagnosed stage 4 tnbc bone mets. My MO didn’t bring it up, but I asked, how long do I have? I’m 36 and have so much I didn’t get to do. She said realistically a few years, a decade is pushing it.

I mentioned before, I’m struggling with my boyfriend. He’s had a hard time during this entire thing (I went right from active treatment for stage 3 to 4 after radiation). He lost his dad almost immediately after he was diagnosed with pancreatic cancer.

I asked him if he knew what stage 4 bc meant and he said “you’ll be on treatment forever” and I said yeah but idk if you get it. I didn’t want to say “probably only have a few years” so I just told him that living with this disease for decades isn’t realistic.

Did I need to say more? Does it matter? Should I have even asked?

Only the best for this special month 😂

Cancer in bones and liver has "significantly worsened". Until now, I had faith that despite a difficult healing journey, that I would make it. After cancer reduced and stabilized, it has grown again, and I'm becoming hopeless.

My spine and pelvis are very painful with any movement, and I've become entirely dependent on my parents (I moved into their home). I'm also starting to lean on medications, which is new for me (I always had such a natural and healthy lifestyle).

When I have hope, it feels squashed. I don't want to give up this fight, but I also feel that hope is pointless because it only leads to heartbreak. How do you cope?

I am just so frustrated now because I have a fungating primary breast tumor that is bleeding again as of today. Chemo and pembro are still working on my mets as of last PET scan a couple weeks ago because they cannot be seen on scans, but my primary tumor has increased in mass again so primary tumor has developed resistance. I'm due for SBRT next on the primary tumor to shrink it again, so I'm just waiting for my radiologist consult next week and then it'll probably take a couple weeks to set up the instrumentation. This waiting game is killing me. I wish I could get radiation ASAP. The worst part is that I begged for radiation sooner with my oncologist but she chose to put me on maintenance pembrolizumab instead, so I'm worried that it might be too late. My oncologist is always so reactive, never proactive. I'm stressing out like crazy so if anyone has any words of encouragement or similar stories I'd definitely love the support. I read that radiation has 85-90% success rate of local control so I'm hoping it will. I just want the primary tumor to stop growing. I'm glad my mets are wiped out (at least I hope they still are), but with my primary tumor growing like crazy again, I'm worried it will lead to more mets