r/LivingWithMBC

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.

I got to decorate for Halloween.
Mainly just the foyer table indoors.
But also the porch-
Though not as much as prior years;
But even so, I kept thinking while I was pulling out things including stuff my son made in prior times, how glad I am because last November I didn’t know if I’d get to do this.

I’m having a dirtbike, 4 wheeler, golf cart whatever you want to ride at my house. (I have everything just bring yourself). I set up a make shift break room thing in my goat barn out back too that I’ve never used for goats only with cancer friends to break stuff lol. Anyways I have about 7 other girls coming that all have stage 4 breast cancer we have a group here in Mn and just want to see if anyone else here on reddit live in Mn? If so and you want to come message me! The more the merrier! Also, I have a catapult that we’re going to launch like apples, pumpkins and such from. Basically we just do silly days at my house and laugh a lot so if your in the area please reach out would love to have you! Also, everyone is super chill, nice, and welcoming. We’ve found friendship has helped and doing things together so seeing if anyone else is local to us!

First, I am sorry that this will be all over the place. Four and a half months ago, I had my first positive Signatera test results after years of clear results. I went through a PET scan in June and it was completely clear. Since the Signatera test was positive, my MO ordered a follow up CT scan for August 25th. In the meantime, I had a bilateral oophorectomy, hysterectomy with removal of fallopian tubes and cervix. My initial diagnosis in May 2021 was Triple Positive Inflammatory Breast Cancer. I had four years of NED before that positive Signatera test.

On August 25th, I had the CT scan and another Signatera test. The Signatera test results increased 85 times the previous results. The CT scan showed a 12 mm nodule on my upper lobe of the left lung. On September 2nd, I had a bronchoscopy and the results came back abnormal yet non-diagnostic. This Wednesday, I had another PET scan.

Thursday morning, my world imploded. The cancer metastasized throughout both sides of my lungs, in my liver, in my spine in two places and other locations that I don't understand. I met with the pulmonologist and he said that he had never seen cancer spread so much so quickly.

I'm terrified and and it's been less than 48 hours. I'm already done hearing how strong I am and how I am going to beat this. I get my port inserted next Tuesday to start 17 rounds of chemo. Please tell me what helps you from telling people, 'No, I'm not going to beat this' or do you just let it out. Thanks for reading.

I am at my wits end. I am on a 21 day wash out from Xeloda. I was looking forward to it. My feet were going to be healed and pain-free for the first time in four years. I was going to take my dog on walks and go to a swim aerobics class.

I had a fractured rib from a cold, and today I sneezed, and now it's exponentially more painful. I fear I have broken the rib.

I have a bone scan on Tuesday and a biopsy Wednesday, and I can't even shower or dress myself right now. I am so sick of chemo and cancer, and my lovely little recovery time is as broken as my rib. I am gutted. My in-laws visit tomorrow, I had a facial booked for Monday. it's all going to be so difficult now. I want to scream, and my husband is being disconnected and fatigued by my "negativity." He didn't acknowledge my cancerversary, and I dont know what I wanted, but I wanted something. Boof.

If I were to go into the ER, is there anything they can even do? My understanding is that a broken rib sorts itself out more or less.

I am so tired of menopause and cancer and chemo and bullshit. Womps womps. But really, this rib bullshit on my magical break? Boooo!

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 🥺

I had a pet scan last week and got the results that I have a lymph node that is reactive.

Went to the oncologist, but she wasn’t there so spoke with the PA and another provider. They wanted to talk to me about possibly doing a biopsy but needed to talk to my oncologist.

They both swore they would send me a chart message to let me know the plan. I asked several times if it would be today (Friday) and explained that it is difficult to wait over the weekend when you don’t have information and are nervous. Both assured me I would have it Friday.

Guess what I don’t have?

Can there just be a required course friends and family have to take when you get diagnosed with cancer? I appreciate my family so much, I really do, but am I the only one that ever feels like people treat my disease like their own problem?

I'm not good at speaking up on my own behalf, but when I do, I get met with how ungrateful I am. I live with a couple of family members, and my child. My family members go to church and talk about my disease and get condolences from their friends and then come home and get impatient on my treatment weeks when I'm sick and can barely move. Then when I'm on my "well weeks", they're up my butt micromanaging everything I do and insisting they need to do it for me. When I'm sick and literally crawling up the stairs, they complain and huff and puff about me being in the way trying to scrape myself a bowl of cereal together but don't offer to help and then complain about how maybe I don't need this treatment because it's making me feel ill.

Then I have my kid's dad (divorced but friends) taking advantage of me being sick as though I'm a captive audience to take dozens of phone calls to hear him complain about everyone and everything, but then the moment I'm not receptive to it, I'm told I'm problematic.

Like, I wish there was just a class about how to handle being around a cancer patient. How to ask if we need help, what's not helpful, what it feels like to go through this and that it's not all about them and how they feel about MY disease. I feel like I'm spending all day trying to cow to everyone's feelings about it, while I feel that shortened clock of life spinning its wheels ever faster in my head.

Sorry for the long rant... I'm just emotionally exhausted today. What should have been a wonderful day with my kiddo got smeared with everyone else's negativity and just ruined it.

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 :)

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. ❤️

Hi everyone, does anyone know when there's extensive tumor spread in the chest wall, can we still massage or do chest training? I heard it would trigger more metabolic activities in that area, hence the tumors can grow more. I have a quite big scar and a flap on that cheast, so i feel pain sometimes. It confuses me whether its due to the muscle got invaded or the surgery. Until now my chest is warmer than other parts of my body.

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!!

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.

Hey ya’ll! I was diagnosed de novo November 2024. Finish my chemo in June 2025. Fortunately my scans and Signatera have been clear since.

I had a complete right mastectomy late March of this year. Followed by 4 sessions of radiation to my left 6th rib to try to help with pain from my dead metastatic disease there.

I have had some unexplained aching in my left healthy breast that was isolated to one spot and has been scanned via ultrasound and PET with clean results.

The past month I have had that spot grow and extend to a larger swollen spot under my breast basically on the rib directly adjacent in front of the treated rib in my back. I also have some swelling under that armpit that was not there until recently. I have told Onc and surgeon about the previous pain. They scanned me and assured me there is nothing to worry about. This week the spot under my breast has suddenly become very uncomfortable and a lump has swollen to about the size of a thimble.

Anyone have something similar happen?

I am thinking this might be a result of the radiation?

Any feedback is appreciated.

Thank you 😊

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

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I sometimes hesitate to post, because frankly, I feel like a "cancer impostor." I know I'm not, like most of us, the body I'm living in, and the life I am living in it, bear no resemblance to the me of the before times.

But ya'll. I just got the results of my latest set of scans and, for the 5th consecutive time, NED. TWO AND A HALF YEARS!!

I was so sure this was the visit where my oncologist would hold my hand and say, I'm sorry, we knew it would come back and now it has." But no. Some of my smallest bone mets are now indistinguishable from the healthy bone around it.

So now I'm laughing and crying while I smoke a fat joint. I haven't called anyone yet with the news, it seemed more important to tell all of you; people who know this isn't just a "wow that's great" moment.

I read so many heartbreaking posts on this sub, and, like all of us, I feel your pain because I have felt it in myself. And now I am praying that every one of you gets a chance to feel what I am feeling now.

I am holding each one of you in the light.

Fuck the phrase, “But you look great!”

What is your Fuck it Friday?

Basically the title of the post.

I really hate summer and summer is coming here in Australia. I adore European winter (last time I was in Europe I was in Scotland in December before diagnosis).

I hate summer even more now with all the hot flashes.

I wouldn't be in London - the plan is to drive around southern England, visiting castles, and Downton Abbey/Bridgerton/Jane Austen estates and such. We'd be there for 12 weeks roughly, between scans.

But is it crazy? Would I be putting myself at high risk of getting ill?