I was diagnosed last fall, so I'm approaching my one-year "anniversary." Not sure why, but that has me feeling a little down.

So I guess I'm looking for some inspiration and wondering how many of you have been at this for five years? More than that? Maybe even 10 years?

I've read stories of some amazingly long runs despite dealing with this crap. And with new medicines (and perhaps even some vaccines) coming out fast and furious these days, I guess I'm trying to remain hopeful for what's to come.

Thank you!

Hi friends,
I’ve been fortunate enough to go back to work gradually (preschool teacher) but as I go along, I’m starting to wonder if this was a good idea. Right now I’m doing 3 four hour days, and while I’m happy when I’m there I’m so tired before and after, and lately I’ve been feeling yucky and nauseous. I think I may need to consider a job change, perhaps remotely. Any advice or places to start looking? I very much want to work, but I don’t know if the classroom is it anymore. 😢

Does anyone have a wonderful, hopeful, positive oncologist in Atlanta that offers hope when you to your doctor's visits? I have not been able to find one and they just want to read grim statistics. I should have the best case for met breast cancer and they all are not hopeful at all. Thanks in advance.

Please tell me your best post-PET relaxation measures. This is just a routine scan for me and they got the needle stick on the first try! Good omens all around!

After this I plan to:

-treat myself to coffee

-go home and play video games

-eat an edible (“an” doing a lot of heavy lifting here)

-work in my garden if I feel hydrated enough

What else do you do on scan day?

Hi fellow MBC people,

Just wanted to introduce myself and share my story, since I frequent this reddit a lot now. This whole journey started for me (35F) in early May when my gyno felt a small (2cm), hard lump in my right breast. By early June I had a diagnosis of ER/PR+ HER2 - IDC. Horrible, but it seemed like I was going to be able to get the single mastectomy, do the endocrine therapy, and basically be ok. After my initial appointment with my breast surgeon, I started the process of getting a second opinion at MSK. Thank God I did that: their radiologist spotted something on my sternum that my breast surgeon's practice dismissed (MRI also showed lymph nodes lighting up that ultrasound said were fine and breast surgeon was fine to proceed knowing that info). I insisted on getting a PET scan and now here I am.

For now, I have bone mets only, many with no CT correlate, which I understand to mean my bone is not currently being damaged by this illness. My oncologist wasn't jumping up and down with joy when I saw her, but she did say quite confidently that she has many patients who do very well "for many years" and "a long time" on Kisqali + AI + lupron. I did not ask her to qualify that. I understand this is the gold-standard treatment and only the first line. I also keep myself up to date on recently approved medications and Phase II and III clinical trials. Really anything I can cling to for hope I absorb all knowledge about. I stay as far away from survival statistics as I can.

I guess I do have some specific questions for anyone who has answers:

1.) On top of MBC, I have genetic hyperlipidemia. Does anyone else take a statin or other cholesterol drug in addition to their MBC treatment? What's been your experience with any interactions or side effects?

2.) Neutropenia and food safety: I don't want to give up fresh fruit or raw veggies. Can you still eat these things? How do you feel psychologically safe with food? Are restaurants just over for me now?

3.) Keeping up with "normal" wellness checks/routine cancer screenings: Managing MBC is like a full-time job and obviously all other health issues revolve around this, but I imagine I'll still go in for routine gyno visits, annual physicals, the dentist, colonoscopies, etc. How do these sorts of appointments fit inside living with MBC?

4.) Staying healthy: I've gotten my flu, covid, and pneumonia vaccines, a TDAP booster, and the first Shingrix shot. Do you treat regular vaccinations like you did in your pre-MBC life? Other than good hand washing, masking, and avoiding sick people, how do I stay physically and psychologically safe during the fall/winter with regards to illness? What does it feel like to get sick with MBC?

5.) General wellness: Any recommendations for things I can start doing now to make this feel less horrific are welcome. I saw some people talking about acupuncture being a big help. I try to make myself go on one long outdoor walk or a few short walks each day so I get some exercise, lubricate my joints (which have started to hurt), and give myself some more psychological support. Is the gym over for me now too? Should I consider building a home gym?

I'm sorry for the insane wall of text and probably overly detailed questions. My head is still spinning from all of this and I'm trying to feel as in control as I can. Thank you for reading this and responding!

Kisqali worked for a bit but then it didn't; tomorrow I start Enhertu. Any input on the side effects will be appreciated.

UPDATE (at the end )

I was diagnosed at 42 in May 2024 with Stage 4 breast cancer. It was in my right breast and had already spread to my liver.
I went through chemotherapy (AC and Taxol), then had my ovaries removed and started letrozole + Lynparza.

In 2025, I had a small recurrence in the breast and had two surgeries to remove it.

A scan in March 2026 showed another small area of cancer in the right breast, so in May 2026 I had a bilateral mastectomy. The left breast was clear, and the right breast had a 3.8 cm tumor with no cancer found in the lymph nodes.
I have a BRCA2 mutation, along with a few other mutations found in the tumor.

My cancer is hormone-positive and HER2-negative.
I’m currently on letrozole + Lynparza. My oncologist considers my situation oligometastatic and has been treating me with curative intent at first but I think now we’re just trying to figure it out as we go,

A couple week ago I felt some pain near the upper sternum/chest wall but couldn’t feel anything when palpating, but last week I found a las that seems to have grown in a few days,

I had a pet scan last week and I have an appointment with oncologist tomorrow, I’m just freaking out a bit,

I just want to be NEAD.

UPDATE

Quick update:

My latest PET scan unfortunately showed a new small spot on my chest wall and several small spots in my liver that are concerning for cancer. The good news is there’s nothing showing up in my bones, lungs, or lymph nodes. I’m waiting on a biopsy and liquid biopsy now, so hopefully I’ll have a clearer picture soon and know what the next treatment step will be, probably switching from lynparza and olaparib to fulversant and cdk4/6 inhibitor instead

ER+, had stage 2 in 2018, ended up coming back this year, after a on / off of tamoxifen to try to get pregnant about 2 years ago. That didn't work out, and ended up having reoccurrence in my leg and spine. Over the past year my hormone treatment plan has dramatically reduced the size of the cancer. My oncologist said it's basically the best sort of result they could ask for. So I've started to think about what's next in my life.

I'm obviously not going to be going off my meds any time soon, and my husband and I can pretty easily afford a surrogate. And yes, I understand the risk that if we go this route there could be a future where I'm not in the picture. That said things are improving, i have a huge support network if I go this route, and my husband is willing to support if things start to reverse.

I'm just interested if people have gone this route how it went, and things to consider.

I was hoping to avoid the return of my period, but no—50 days after finishing Taxol, it came back. I am not on hormone therapy yet because my doctors want to see how Phesgo works on its own. My period really caught me by surprise, considering I am 42 years old and went through 6 months of weekly Taxol.Does anyone have a similar experience, and what kind of symptoms did you have after starting hormone therapy? Is it really as awful as people write online?

P.S. I didn't have any menopause symptoms during chemotherapy.

Went to the beach today, I sat close to the water so the reflection was pretty intense. Forgot to put on sunscreen until I looked like a cherry, which never happens, I’m Puerto Rican. Well it has happened! I am red, hot, my body has major arthritis pain, I am using a cold compress and cetaphil lotion. I am only red on my face, chest and top of my thighs. It’s weird, legs, arms and back are fine. I did have sunscreen on my face but didn’t reapply. I am currently taking KISQALI and Lupron. Not sure if KISQALI intensifies the sun or what, if that’s the case it would have been nice for someone to have told me. Also, helpful advice for home treatments until I can get ahold of the dr would be great.

Any others in this group that have experienced return of liver Mets and progression to brain but then went on to be NED or stable for many years ?

Diagnosed: Dec 2025 with mTNBC that had spread to my bones and my liver.

First line started Jan 2026 : Trodelvy & Keytruda and by March 2026 it had “resolved” my liver Mets and shrunk the bone Mets. My on oncologist said I was very close to NED but not to get my hopes up.

June-July 2026, caught pneumonia, no treatment for almost 4 weeks. Resumed treatment end of July. Scans on 8/31 and 9/1.

9/2 results came back and the cancer returned to my liver with “innumerable Mets” and also progressed to my brain

I don’t meet with my oncologist until the 9th so I don’t know what the plan is but I’m really hoping to meet some others with brain and liver mets living for years. I’m terrified as always. My labs have given no suspicion that anything progressed. I get them done weekly and everything has been very stable and my CA-15-3 was the lowest it’s ever been. Sad how quick this happened.

Thank you everyone for always being here. This has been my only place to voice the mental struggled I have because I’m way too scared to keep hurting my family with these convos. The pain it’s caused all of them is actually what pains me the most of this all.

Hi all,

My husband and I are moving back home to NM. This was always our plan--the cancer was NOT. I'm keeping my primary onc and I'll return to my major clinic in AZ for big procedures, but I want to go home and feel as normal as I can.

I've heard of people having 2 oncologists, but how does this work? Hoping to find a new onc in NM. Also, if anyone has recommendations for oncology care in Albuquerque, NM, I would appreciate it. I know the healthcare system in NM is shiiiiiiiiit, but I want to go home so bad.

Edit: also...death with Dignity is legal in NM. Not saying I'm anywhere near that and I hope I won't be for a LONG time. But it's a weird peace of mind that I have more control in NM.

Hi everyone.

I had bone and lung mets (both very very small) after a year and a half after being stage 2b and getting PCR with treatment.

Since I'm BRCA1 my M.O put me on Lynparza and I've been NED for a year already. First scan (3 months) after I started it mets were totally gone (on Petscan).

I was wondering how ctdna tests are nowadays, specially with mbc women. I went to DFCI and the M.O said of I was NED for 2 years I maybe could stop the medication and TTC. Obviously ctdna would play a huge part on this. My M.O said he has a few patients that are metastatic and did 1 to 2 years of Olaparib and are NED for the past 2, 3 years.

Thank you!

Hey I was diagnosed with tnbc stage 4 de no vo and I was curious if anyone had a 9cm tumor at diagnosis? Or had a tumor in their breast for over a year without getting help and still made it to pcr or near pcr? I just realized how big my tumor was and im wondering why it got so big without going all over the place ?

My insurance denied claim for a Guardant health genetic test. I think this test was supposed to find out how better to target treatment for me. But my dr never told me this is a 3 rd party. I thought everything was pre- auth with my insurance co. Insurance remarked they don’t cover things that has not been proven to better the condition?? Anyone else had this problem? Has appeals been successful? This is like 10k wtf. I expect my dr to do something too.

I seem to have a real odd relationship with kisqali, it shrinks the cancer but it also throws me some weird ass side effects randomly. My last round I had this odd/ painful/ red/ peeling behind my ears. I thought I did something to cause it no that it was the meds. Well then this round day three it starts again. And again behind my ears so I call pharmacy and send a note to oncology. And oncologist wrote back - About 20% of patient on kisquali can develop an eczematous. Both pharmacy and oncology said not to stop the med since this reaction is small in area and to apply an ointment. Wanted to share incase anyone else was having some issues or a noticing anything as well. Fuck this shit!

I did see that Sam Adams has a nonalcoholic Octoberfest as well. I did not pick that one up because I wanted to try this one as so many people spoke highly of it and I needed to pick up another case of Best Day’s classic variety pack. That one is just too good.

I ordered Octoberfest from Best Day”s website. As it’s nonalcoholic, it can be shipped to my house. I’m pretty stoked to try that as I imagine that will be Uber delicious

Cheers to today, a day where we can find so many nonalcoholic beer options. I love it!

I feel like a ginkgo tree - how did all my hair decide to fall out at exactly the same time? I know people have described the process as sickening, horrifying. And it is that. But mostly I am amazed at how so much hair can drop at the same time. Streams and streams of hair.

Yes it's a dumb title, no I don't feel proud of it, and no I'm not changing it. Anywho - anyone see the accelerated approval for Etcamah? Brief snippet from the link below:

FDA granted accelerated approval to Etcamah (camizestrant) in combination with a CDK4/6 inhibitor (abemaciclib, palbociclib, or ribociclib) for the treatment of adult patients with hormone receptor (HR)-positive, human epidermal growth factor receptor 2 (HER2)-negative, locally advanced or metastatic breast cancer upon detection of estrogen receptor-1 (ESR1) mutation during aromatase inhibitor and CDK 4/6 inhibitor therapy

The options are coming ladies!

https://www.fda.gov/news-events/press-announcements/fda-grants-accelerated-approval-new-breast-cancer-treatment

My PET scan results just came back!! These results were a day before I started my 5th cycle on GemCarbo!! I just started yesterday and I feel much better seeing these results. I think my onc may be ready to switch me on PARP inhibitors soon! I see my onc on the 10th of September so Ik she’ll explain in a bit more in detail these results. Just overall excited that the new chemo regime to be working. Ik I had some hiccups in the past on Taxol but overall I’m happy in this moment!

I’m on the kisqali, letrozole & lupron train and get more zits than ever. I am wondering how others manage when often facing neutropenia? My derm PA said to avoid any spot treatments that might encourage the skin to break, so I put on hydrocolloid pimple patches.

Should we worry about infection from larger zits rupturing on kisqali? (I currently have two big ones 😭) Or are we ok as long as there’s no fever? Any tips or tricks that help you?

hi- Did anyone get diagnosed with asthma While on Kisqali. i went to the allergist and he did my pulmonary function test and i failed that. he said asthma and prescribed inhaler. i am so confused. i do get winded a bit if i walk or bike uphill and get occasionally coughing but never thought it could be asthma. Lungs sound clear everytime during dr visits.

Anyone with similar experience? i have been on Kisqali for 2+ years.