r/LivingWithMBC

I (34F) am shattered. Three weeks ago, after discovering a lump, I learned I have breastcancer. After many tests, I now know it is triple-positive: one 3.5 cm tumor, a smaller 8 mm one, and involvement of one lymph node. A treatment plan had been drawn up, and the only thing left was a PET scan.

Today, I heard that spots (three or four) have been found on my liver. I have an MRI tomorrow (i dont even know why) A biopsy is still to come, but they’ve already said these are metastases. I just want to go to sleep and never wake up. I am at the end of my rope. Please... are there any positive stories? I’m trying not to Google it, but I’m going out of my mind.

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

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?

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.

My husband of nearly 35 years has been loving and supportive, gentle and sweet through my cancer "journey" so far. He is an extremely kind man with a warm heart and a loving soul. But he has always wanted (since I've known him) to own a hearse.

To be clear, when I say "hearse," I'm specifically talking about a used vehicle that transports the dead between a funeral home, a funeral, and a cemetery. And, yes, he's made it clear he wants me to ride in it with him.

Someday.

And I was okay with that because "someday" means "not today," and I never actually thought he was all that serious about it anyhow.

It turns out he was serious, and "someday" has recently been revisited, and I have stage 4 cancer now. (Diagnosed de novo in 2020.) I wish I had a better sense of humor about all this, but that kinda left when I lost my hair last year. I really miss my sense of humor. It was like my armor, but now all this is just offensive to me, and he can't fathom why. Like I'm the unreasonable one. Oh gosh! Am I the unreasonable one here? I'm currently NEAD, so maybe? I don't want a hearse! We're not made of money.

I don't understand how he thinks this is fine. He's not phased by it in the least and doesn't understand what it has to do with me having terminal cancer.

Psychologically, I don't love death or symbols of death in my house. I rarely even welcome dried flowers for long. I'm trying to find a different way to see this, but I feel like I've already been a really good sport about this cancer thing so far. I don't let myself sit around crying about it. I try not to complain about side effects or symptoms if I can help it. I try to keep myself in a fairly positive mindset with my thoughts far from death or dying, and it's worked for me really well so far in combating depression and anxiety. But I feel like seeing a hearse sitting in my driveway everyday will maybe make that harder to do on a day to day basis.

Does that sound like I'm just being a drama mamma? Am I making sense to anyone? Can anyone relate to my mindset at all? I feel like such a bitch for saying no. It's like I'm crushing his soul.

I know I ask for a lot while he asks for very little. I went to Australia (from the US) earlier this year, and he didn't do anything special for himself. I don't work, but his job is providing our health insurance, so he still works, and he works a lot of hours. He never does anything for himself, and now he wants to do this one thing... But why does it have to be THIS? He wants to replace our van, which definitely needs to be replaced, but why with a hearse...?!?

Would you enjoy riding in a hearse, like, as your main ride? Would you want one in your driveway? (Not enough room in our garage for our van - or a hearse.) Do I need to just lighten up?

My oncologist reached out and let me know that my PET scan results are good, I have some shrinkage.

I don’t know too much, the conversation was brief, but I will learn more on Thursday.

It’s a clinical trial, here’s the details: https://clinicaltrials.gov/study/NCT07029399

I am very happy!

What kind of side effects do you have with just the Herceptin and Perjeta? I had Paclitaxel every week, adding in HP every third week, and couldn't tell the difference in side effects. So hoping the HP part will be uneventful.

Just got my ct scan back - and it seems verzenio actually did something other than make me question every fart. It shrunk my breast tumor, shrunk my affected lymph nodes, but a new 3 mm tumor was found in my right lower lobe, and my bone mets kinda went nutso with spread. Today I'm just kinda achy (I think it's because the weather changed and got colder), still taking verzenio, and waiting to hear from my oncologist. Just kinda venting, and needing those positive thoughts.

Just seeing what other Enhertu folk are experiencing.

My hair had a major shed after No. 2 and I cropped it very very short (I had SO much hair that having a major shed was just too depressing).
It was very thin in one area but I had decent all over coverage.
I think my bone marrow mets and low red cell count caused more shedding (more like postpartum shedding) but it’s been slowly, consistently filling in with less/normal shedding. It’s my natural colour (less grays!) but unsure of texture yet.

I had a break for surgery (17 days from when my last infusion was due, but have had No. 6 today), I’m hoping I don’t have a shed due to the break.

How is your hair going?

Need some advice/support. Has anyone experienced lung changes on CT after radiation and Verzenio?

I’m 5 months post-radiation (ended in March 2026) and have been on Verzenio for 8 months (since Jan 2026). My May 2026 CT showed a new moderately tracer-avid right upper lobe airspace opacity measuring 1.7 cm. The August 2026 CT shows it has grown to 2.8 cm. The radiologist suspects it may be treatment-related but can’t rule out metastasis and recommends close follow-up.

Has anyone had a similar finding?

I just feel really lonely sometimes. It’ll be four years in October that I’ve been living with stage 4 metastatic breast cancer, and a lot has changed for me during that time.
I walked away from a 12-year relationship. We have two kids together and we coparent. I know he’s not good for me, but I still find myself drawn to that connection sometimes because it’s so hard to find people who can relate to what you’re going through.
I’m in cancer support groups, but I don’t feel like people are necessarily looking for friendship there. It feels more like a place where we come together and talk about what’s going on with cancer and treatment. That has its place, but sometimes I want something more than that. I want a friend.
This year I’ll also be celebrating three years sober from alcohol. When my kids are at their dad’s and I’m home alone, sometimes I find myself wanting to sleep or overeat, just to take away some of the pain of feeling lonely.
Don’t get me wrong, I actually like being by myself sometimes. But there are other times when I just want someone to talk to. Someone who can meet me where I’m at. Positive affirmations can be helpful sometimes, but other times I don’t need someone to make me feel better. I just want to be allowed to feel how I feel. Just let me be. Let me share what I’m feeling without trying to fix it.
I think cancer makes that especially difficult. As soon as you start talking about it, people are confronted with their own mortality, and sometimes they immediately try to make things positive because sitting with the reality of it makes them uncomfortable. I get it.
I’m in therapy. I have a psychiatrist. I’m doing the things I’m supposed to do. This has just been one of the toughest journeys I’ve ever been on, and one of the hardest parts has been how difficult it can be to make genuine connections and find people who are willing to meet me exactly where I am.

Totally random question as I am just curious. I recently got my nose pierced and I will be due to have my first pet scan since starting treatment in the next couple of months. Anyone out there with piercings that can tell me if they need to take them out for a pet scan? I swear I’ve kept my earrings in (also small studs) for other scans and now I am second guessing myself. I just want to make sure I have a plan for a glass place holder if I need one. I don’t want it to close up while I’m in the scan.

I had my ovaries and fallopian tubes out over a month ago. I have been on ovarian suppression on and off for 7 years (since my initial Stage III diagnosis). I haven’t had any changes in myself bar a little bit of wrist/joint pain in one hand as I’m falling asleep. A friend said it’s likely that I’m curling my hands and wrists as I sleep so I’ve kept my hand and wrist straight (this seemed to work).
I initially took Arimidex as an AI after Stage III treatment and got trigger finger and de quervain's tenosynovitis, so changed to Tamoxifen. I think I’m anxious because of that experience.

Any hints or tips for this menopause side effect?

(My cancer decided, in desperation I like to believe, to hide in the pharmaceutical sanctuary site of my ovaries (where chemo has difficulty reaching due to blood structures, tumour heterogeneity etc) so they had to go and on with Enhertu I go!)

Does anyone have any recommendations for an oncologist at MD Anderson? Please let me know! Thanks!

This year has presented significant challenges.

I am approximately five years into my journey with Metastatic Breast Cancer (MBC), having received a de novo diagnosis in 2021 at the age of 38. Over the past five years, I have processed numerous losses and, more recently, had cultivated long-term goals, aspirations, and a renewed enthusiasm for life, which had been absent since my diagnosis. My cancer has not progressed, and I have been on my initial line of maintenance medication for four years, achieving No Evidence of Active Disease (NEAD) status since mid-2023.

However, this year has introduced a new dimension of grief and sorrow that I had not previously encountered on my journey. Specifically, I have experienced the loss of several individuals within my cancer support network. Three of my most significant supporters and fellow cancer patients have passed away. This has left me feeling isolated, saddened, guilty, terrified, and a spectrum of other emotions.

Has anyone else experienced a similar situation?

Hi Everyone. I have been feeling really disconnected from my partner this week. Ever since starting this 4th cycle, my libido and my patience is at an all time low. Even with my friends, it’s been hard to connect with ppl and idk I just find myself getting annoyed at every little inconvenience. Today I had a tough time eating and it just set my day off to a bad start.

I just feel like a crappy gf rn. I find myself forcing intimacy at times, and it just makes me feel super disconnected. We facetimed yesterday and I just couldn’t care less for how her day went. I felt terrible. I used to make fun of her (in a loving way) for her repetitive phrases: “basically”, “actually”, “essentially” . But I was genuinely so annoyed yesterday, in my head I was counting how much she said those phrases and it was really driving me crazy!

I love her and all but I just don’t see her the way I did when we first met. Esp with the distance, just talking hasn’t been making me feel connected to her. We have so many great memories together and I don’t want to hurt her or distract her from school by calling it quits. I don’t want to break up but I definitely need some time to figure out my feelings. Do you think distance helps when you feel overwhelmed in your relationships?

I made plans to see her this week but I rescheduled because I’m recovering from a port replacement rn. I’m just confused on if I need space or to book a flight to rekindle what i feel? For now I think I’ll ask for space. What do you guys think?

Lately it’s been getting harder and harder for me to find rides to my chemo appointments. I think most people do not want to sit and wait for a day of 6+ hours of appointments. I get it. And to add insult to injury, at my next chemo appointment there is a tentative order for me to have a blood transfusion so I will be there for probably 12 hours or more depending how many units I need. No one is going to want to sit through that. Does anyone use ride shares or have any other ideas? I have commercial insurance. I am in Arizona.