Hi there. I’ve been searching for a while but haven’t been successful in finding some sort of guided visualization app or YouTube video. The kind of thing where they say “see your cancer cells turn black and leave your body” or something like that. Do you know of anything I can check out? I feel like it would help my mental game and I firmly believe that’s important too in addition to the strictly medical stuff.

Has anyone tried thermomagraphy scans? Do you feel your cancer showed up more accurately? I know with MRI’s they are just highlighting the hot spots. Considering getting it done and would like some feedback. Thanks!

How do you know if pain is from spinal bone mets or from the treatment. On Abemaciclib, anastrozole and zoladex. Xxx

If you’ve seen my previous post you know that I just got news of my first progression after nearly 3 years. I am so so angry, but most of all I am really sad and anxious. I don’t remember being this upset before, but I feel like our brains tend to forget those things. A girl posted how she wanted to end her life on Facebook tonight, and I wanted to shake her and tell her how badly I just want to live. I didn’t say anything of course, But I feel awful for even thinking “I wish my biggest problem was a boy”.

Every time I feel a twinge of pain (which I normally have since I have bone Mets already) I start getting bad anxiety and thinking it’s worse than they thought and missed something on the scan. I know it’s anxiety, but I start to have a panic attack anyways. I started a new med for it, but I know the moment it starts to wear off. And I hate taking more meds in the first place.

I just am wondering how you all are coping? I’ve purposely stayed out of support groups like this for going on 6 years so that unless I had an appt or something, I could “forget” about cancer as much as possible. So until this past week, I’m new here. What do you do to help not be so overwhelmed with the anxiety, crying, anger, etc? I’m usually one of the most positive people on the planet, so this is not at all normal for me. I got too comfortable being “stable”. I would have scanxiety of course, but until this scan it was never this bad. It’s like my brain knew this time would be different :/

Any advice on how to get back to myself would be greatly appreciated. Your stories of how you were able to get stable after a progression again, what you do to keep busy, literally anything. I appreciate this sub existing so much right now. I feel like no one else could even begin to understand besides you all. If it matters, I am newly 34, I was originally diagnosed at 28. ER/PR+ IDC, bone Mets, and now 3 liver Mets.

I've been on Enhertu for 2 cycles now and my hair is thinning like crazy. Has anyone had this happen and it didn't progress to a shaved head and wigs? Did the shedding stop at some point?I know it's not the end of the world, but the not knowing what to expect is the worst... 😮‍💨

How long do the body aches last? I feel like I’ve been beaten up.

I wanted to let this group know that my beautiful daughter “Dewless” passed away Thursday 8/28/25. She held on to celebrate her son’s 3rd birthday that previous Sunday. She was diagnosed while pregnant in 2022, and found out it was metastatic in June 2024. She courageously endured 5 lines of treatment. She was in home hospice for 2 weeks. I refuse to say cancer won. She won, she chose to say enough. She handled living with cancer with grace if that’s possible. In the end love won, not cancer because she was surrounded by those that loved her enormously and endlessly.

Edit: Thank you all for your comforting words. I hope you all stay positive and hopeful during your treatment. Leaving this post with my daughter’s own words after Lynparza worked for 6 months for her when she found out it was metastatic. This was written 8 months ago. She always had hope! And the best sense of humor I might add!

“This Christmas I am metastatic, 145 lbs, permanently bald on 1/3 of my head, and yet more hopeful than ever. More sure than ever that we are getting to write our own story. Despite what I know about my chances. I'm not kidding when | say damn near nobody thought these stupid ass pills would work. They are miracles. I want to shake every scientists hand who worked on creating them and thank them for their sacrifices and the stress they must have gone through to do it.”

I work as a paraprofessional in an autism classroom. I am thankful I feel well enough to work. My job is stressful and exhausting but it is oh so good for my mental health. Each school year I am given 10 sick days and 2 personal days. As many of you can probably relate, 12 days in 9 months is not enough time to cover all of the appointments MBC patients have. I see my oncologist once a month and get faslodex injections at that appointment. So that is 9 appointments during the school year. My oncologist office gives me the last appointment of the day so I can stay at work as long as possible. My past supervisors (2 of them) always let me leave early and make up the time whenever I could. And my team is fine with that. But now I have a new supervisor. I asked her if I could do the same again this year. She told me she would think about it. I had a conversation with her 2 weeks later. She said she was still thinking about it. Week 3, I sent her an email letting her know my next appointment was 3 working days away. I needed to know how to move forward. She responds to the email telling me unfortunately I will have to take sick days. Great. Thanks. Even if I take half days for the oncology appointments, I still have all my days used up for other doctor appointments, scans every 3 months, OT appointments for lymphedema. And because chemo wrecked my teeth, I also need to go to the dentist. And I better not get sick at all. I just hope I am around to see Karma take care of her for me.

So, just got a call from my oncologist, my little suspicious mass is cancer, low estrogen 15% which is why it’s back despite being on estrogen blocker and PARP inhibitor,

Since the liver is still clear, she thinks we should look at a surgical procedure for this spot and keep my treatment, but we’ll probably talk more next week and see what the tumor board decides,

Here’s my last post for a refresher

https://www.reddit.com/r/LivingWithMBC/s/WZvukyDKSJ

Had a marathon day. Had a brain MRI - accepting all the positive energy for no brain Mets. Started Zometa and Folvestant (have no idea if I spelled those drugs correctly!). Starting Kisqali tomorrow. It all begins again.

I need some information regarding Kisquali breaks or similar stuff. I want to travel overseas in winter and trying to see how long of a break i can take from Kisquali. I will most likely finish that cycle during the trip and by the time I return it will be about 4 weeks i won’t be taking the medication. Is it too long? I have had 2 week of gaps due to low neutrophils. Everything else treatment wise should be on schedule zoladex, Zometa and letrozole. Just a little concerned but really want to make this trip. How long have you gone without treatment and did it cause any adverse effect? Thank you

I'm hoping you can help me figure something out. I drove 2.5 hrs to visit my sister. It was the longest car ride I've done since MBC diagnosis in January. My oncologist had told me that there isn't any activity I would do to make my bone mets worse.

I had been without bone pain for months. After the car ride, bone pain. It subsided a day after I returned home. Definitely related to the drive. I mentioned it to my oncologist after the fact, and she said it was maybe muscle pain. It definitely wasn't muscle pain. It was the stab and zingers of bone pain. I'm confused. I get that sitting could have caused inflammation, but would that generate the pain I felt?

I'm hoping to figure this out for the next time I make a long car ride. Next time, I'll make stops along the way for sure. Thanks for any info/advice. 😊💜

I am on the second week of my second cycle of capecitabine (Xeloda), and the itchy, painful, swelling redness in my hands and feet as a result of the hand-foot syndrome that is a common side effect is almost unbearable. I have heard from several women in my metastatic breast cancer support group that those who took the drug were able to take it for anywhere between six months to two years, so I don’t want to have to transition off of it, as I haven’t even done a 3-month scan to gauge whether it’s working. That said, the side effects are excruciating, and I wanted to know if anyone had any recommendations on how to deal with it, besides a urea cream. Thank you in advance for weighing in!

I usually handle this crap pretty well, but I'm getting so worn down. These last few months have been a nightmare, and not because the cancer isn't responding. It is. It's the freaking facility (Roswell Park Cancer Center in Buffalo - avoid it!!).

They used to fit in CTs in between NM bone scan injections and the actual scan. Not anymore. After my last injection they told me to come back at 1; they would do it then. I did, and sat till 2:45, when my appointment was. By then I'm in tears. I'm frustrated, tired, scared, in pain, and just want to go home. I ask when they'll take me back. They tell me they'll see me when my appointment is and go sit down some more (which they didn't. they were 30 minutes late) Last time I was there for 7 hours, for less than 1 hour of testing. Plus a three hour round trip drive. God forbid you book appointments together to cause less inconvenience to your patients.

GI - I have horrible stomach pain and am on multiple meds that aren't helping. They won't do an endoscopy because 1. we don't have the staff. 2. we don't think we'll find anything. 3. we're too busy and 4. (my personal favorite) you're not that sick. (I had one scheduled but an NP decided to cancel it herself. They were too busy). "If you want it worked up, go somewhere else."

Pain - headaches are excruciating and I've now developed tinnitus. Breast Clinic refers me to neurosurgery. She's has a low suspicion of leptomeningeal (MRI was fine but clinically I was having symptoms) so she orders ONE lumbar puncture. The false negative rate for the first LP is approx 50%. The last time I went through the lepto-scare the radiologist told one is meaningless. Disregard it Three is standard of care/best practice. Anything less has no value. I point this out to her. She says "we do 'real world medicine' here." WTAF????? Anyways it came back negative and I get a message in my patient portal to go somewhere else for treatment for the headaches. Maybe find someone in my city that practices neurology (that was her idea of a referral). I have asked REPEATEDLY for a pain med; I'm a stage 4 cancer patient. A pain med is not unreasonable. They refer me to palliative who prescribes medicinal marijuana. I hated weed in high school and hate it now. So back to Tylenol and near constant pain (I did take my dead dogs Tramadol til that ran out).

Brain MRIs - I had gamma knife immediately upon stage 4 diagnosis. After the first post surgery MRI came back good, they discharged me and had the Breast Clinic order all future surveillance MRIs. They did this for 5 years. After my recent debacle with neurosurgery, I now have to back to radiation oncology for the MRI order. So another 3 hour round trip (in shitty weather 8 months out of the year), another day off work for my husband, another copay, another $50-60 in gas. Scammy much, Roswell?

I'm just so sick of every little goddamn thing being a struggle. "Real world medicine"???? I've never heard of such crap. Why would she care about missing the most devastating sequelae of BC? She's not the one that's gonna die from it; that would be me.

Hi all, Just venting. I’m on my 6th cycle of Xeloda Capecitabine. Last scan showed stabilisation of bone mets and bone marrow mets very very minor. I had a review today, bloods are normal (for chemo drugs, stable red/white/plasma) but tumour markets had a little jump. I immediately got triggered & started worrying treatment is failing. I am in therapy, am living my life around treatment and am usually happy but one result can make me spiral. It could be the tail end of winter (I’m in Melbourne, Australia) but I felt deflated by one number - a number my oncologist repeatedly says is just one part of data they use. Any advice for triggers? I’m thinking this is just mets life.

I've had some changes to my opposite breast that my oncologist is now thinking is spread of my disease. I lasted 5 months on this only and it barely stabilized my current disease for a short period of time.

I have a few chemo options. Radition to the breast etc. I also see MD anderson and will get a second opinion they had suggested clinical trial if Trodelvy stops. Maybe try that before circling back to platinum chemo and something else...

The concern being resistance to platinum based therapy.

I have TNBC and its aggressive.... im 39 and it just deflates me, my son young just turned 20months. Try to be as postive as possible but I am pragmatic and I dont know every time this thing changes it just gets me.

I have 2 bone mets and some lymph on both sides. I have mammo, ultra sound scheduled for early next week and biopsy.

Just feeling discouraged

Er + IDC to liver. Originally in right breast, got passed off my my OB as “milk” and “not to worry about it”. My mom (now passed with pancreatic cancer) god bless her soul, pushed me to get an ultrasound. Even the tech said it looked like milk but once they called requesting a mammogram I knew. I declined 32 rounds of chemo at first and opted for double mastectomy and 15 rounds of rads. I luckily only had minor cording issues which I resolved but no limitation of movement etc. Started feeling little pains in late 2023 (a lot of stress that year and the year before a losing mom, almost losing dad and a new born plus 2 under 5) but we were living abroad so I didn’t think anything of it.

Once we got back I got an ultrasound just to be safe. My GP said it just sounded like bile issues. Confirmed about 5 days later it was metastases. I lost my mind. I felt I had been doing everything “right”. Eating clean, moving my body etc. I was recommended to go on tamoxifen initially (pre Mets) but I declined. I didn’t want too much “medicine” in my body. I always had a knowing it would come back in my liver and I trust my intuition more than anything.

Anywho - confirmed liver Mets in February, I went nuts. 2 tumours and some lesions. I decided I’d go on tamoxifen even though my oncologist suggested ovarian suppression, letrozole and ribociclib.

I’ve always felt great, never fatigued how I was at first, very minimal discomfort (if any) still going on 5k runs like it was nothing. Went for my scan in May - tumours had doubled and my original 14 lesions “had increased” but when he counted there was still 14? lol. ANYWAY

I ended up on the 3 treatments and started them back in June. My liver enzymes elevated a little, tumor markers went from 280 to 351 which I know can be the cells being dumped into the blood. I had a “rough go” (in my own terms) but apparently nothing like many people on that first cycle. Nausea, abdominal pain. That’s about it.

July/August was my second round and I saw my oncologist last week - enzymes are higher and markers are at 474. Of course they don’t really care about markers as scans hold the truth but I do have a scan next month so I’m praying that things have shrunk.

Because of the elevation, I’ve been given an extra 2 weeks off of my usual one week off. Onco says this looks typical of this phase of the medication (and he’s pretty pessimistic lol) so if he says that, I feel good about it.

I guess I’m sharing this for anyone who’s going through it. I don’t fear cancer. At all. What I do is want to understand it. I want to heal so that my kids get a mom here for as long as humanly possible, so that other women can see it’s possible, so that I can understand my body and heal what it’s been through (traumatic births, SA etc). I see my oncologist next week for blood work and will create an update post!

OH! I also got in to see the surgical onco at princess margaret this week who said typically they don’t bother looking at someone who’s at this stage but because I’m young (35) and healthy, if I can shrink the Mets and keep them stable for a year, she’ll operate 🥳

Don’t give up hope!!

Well, fuck ... everything has been a chaotic mess and now my oldest and youngest kiddos are about to have birthdays...I was really counting on some help from the assistance reddit but my post wasn't approved because I have two weeks I wasn't active in the last sixty days...I tried to find some odd jobs on nextdoor for extra funds and that's going nowhere...I got told about a local group that helps for birthdays but they aren't excepting new applications...so how is everyone dealing with birthdays because I can't be the only broke cancer parent...my brain is fried, if you have any creative suggestions I open for them...they are both so excited and I am worried they about to super disappointed about their birthdays ...with everything going on I have to at least make their special days memorable...

(as seen on a poster at the cancer center)

Cancer is so limited... It cannot cripple love, It cannot shatter hope, It cannot ceorode faith, It cannot destroy peace, It can not kill friendship, It can not suppress memories, It cannot silence courage, It cannot invade the soul, It cannot steal eternal life, It cannot conquer the spirit.

I was just confirmed to have stave IV mTNBC. I’m terrified and trying my absolute darndest to stay off Google but it’s hard.
I REALLY need some positive stories and hope here. Please no sad stories.

So I had a small lesion on my hip and they did srbt up at Mayo. Its been about 4 weeks and suddenly I'm getting jolts of pain in my hip. Of course my mind is screaming progression but I did contact mayo and they said my pain could be related to the sbrt. Just wanna know if anyone has had a similar experience

Hello, I just discovered that my gynecologist’s kids attend the same private school as my daughter. We meet regularly as I will eventually like to pause treatment for egg retrieval (crazy, I know). She signed off on it given I had a deep response to treatment but I would like a deeper response before doing so. No one knows about my MBC, aside from my doctors and a handful members of my family. Should I tell her not to share anything? I assume she won’t but freaking out a bit now given we’re no longer separated by a degree or so…

Thanks!

Does anyone here have liver mets? I found out today (see previous post) I have 3 small liver Mets and 1 new bone met. I’ve been stable almost 3 years with bone only. I was always told when it goes to an organ it’s very bad. My dr says she’s not super worried. That this is how it goes. We get a few years of stability and then see small progress and need a new treatment. I’ve only been on one protocol so far so I have so many other things to try. I just really want to know what I’m dealing with here. Are yall stable? Is it working? How long have you had the Mets? I don’t want to die even tho I know eventually we all do. I just want to live stable for as long as I can.

I've had two sessions of chemo (taxol/Herceptin/Perjeta) and my breast tumor is basically gone and at my last oncologist appointment (almost 2 weeks ago) she said my one liver and one lymph node tumor had shrunk as well. This week is an off week for chemo (I'm two on and one off) I feel like I feel all these weird pains and aches at times. Mostly bone aches....I have bone mets too. I was feeling so strong and happy that the tumors were reacting so well to treatment and now I'm scared.