Breast cancer with bone mets: Reduced treatment & living life

@californiazebra I would also like to have a local support group myself

@mawmaws I was diagnosed with ILC, Er/Pr+, HER2- which I found out on January 21, 2026 following a biopsy of a small mass in my right breast. Following a FES PET, I was told on March 31, 2026, that the BC had metastasized to my bones. Whereby by mastectomy was cancelled.

I was placed on Tamoxifen to my hormones from feeding the cancer. This is not the ideal one for my type of cancer, but used because I foolishly had hormone pellets inserted by a Naturopathic MD. So you have to wait for my body to eventually rid itself of the hormones from the pellets. I will eventually be placed on a different AI. I do not know which one. I am taking Verzenio to stop the cancer. I take 100 mg x2. I tried 150 mg x2 was toxic, but it “terrorized” my liver. I’m now back to normal on my blood tests for my liver function, back on the lower dose.

@denisedm2026 Can I ask about the Verzenio? I was going to try it after trying many different hormone blockers, but then my Doc said it MUST be taken with a hormone blocker, that the FDA has only approved that. I told her I will not go back on AI's, Fulvestrant, or Tamoxifen because of awful side effects. So now I'm not on anything for BC.
I am thinking of getting a second opinion at a different Oncology treatment Ctr.
Thanks.

@denisedm2026 I know a lot of people is having bad side effects from the tamoxifen. I don’t know why they canceled your mastectomy? I found out over the last few years talking to other women & of course my own situation that the best thing to do is take both breasts off And don’t replace with implants which caused more issues and a different hypo cancer. because cancer comes from there and your ovaries the best thing you can do is get rid of things that make the cancer worse. I think they like to make us sick by giving us bunch of medication they caused the side effects to lead to even more medication’s watching us dwindle away it’s very sad those people line their pockets with money because of people like us desperate to live. if I had listened to my gut and not my surgeon and just had my breast removed, I wouldn’t be in the situation. I’m in now more than likely the cancer would’ve been gone. instead, I listened to her, got a lumpectomy removed seven lymph nodes under my arm. She left me with a positive margin on top of seeding it under my arm from cutting the cancer out and going under my arm where there was no cancer leaving cells so it grew under my arm and spread to my spine.

@jardinera25 A second opinion is always a great idea even third if you need it

@mawmaws My mastectomy was canceled because it would not make any difference because the BC metastasized. It’s essentially in my blood, and as my oncologist said “we can’t take your blood out”. I have BC lesions on my spine, iliac crest and a spot on my skull. So it makes no sense to have such a major surgery/amputation. A mastectomy is done to get all the cancer out of your body. It clearly wasn’t going to do that for me. That would be like trying to put out a forest fire with a garden hose.

@jardinera25 I do pretty well on both tamoxifen and Verzenio as long as the Verzenio stays at 100mg x2 daily. I did have some bone aches when I first started on Tamoxifen. That got better over time and I also started taking Claritin and cherry tart. I’m not sure if it would have gotten better on its own though.
I have ER/PR+ BC, so clearly taking tamoxifen helps stopping my hormones from feeding the cancer.

@denisedm2026 I understand what they’re telling you I’m living it myself been researching and I talked to other doctors removing breast & ovaries that produce what makes the cancer grow & produce more cells in the blood can cause the other lesions in the body to grow faster. So I feel it actually can help lesions in other places not to grow as fast the more they have to feed on quicker they grow and make us worse. I had a lumpectomy first time my mastectomy was twice as easy as the lumpectomy. It surprised me My aunt had told me she had gone through both, and the mastectomy was easier she was right. I only had it on one side and now I want them to take off the right I’m 65. I don’t know how old you are? they say my ovaries are tiny. Don’t produce a lot because of my age, I’m going through the change but who knows 🤷‍♀️they’ve told me I have it all through my spine, possibly one spot on rib, possibly my scapula in left shoulder. haven’t had my skull scanned again yet it’s been a while. I think I told you already that I had a six hour spine surgery to remove a lot of the cancer. I wish you all the best and that you can find anything you need to help you and limit the pain. I know this is hard and I’m scared.

I’m so sorry you’re going through this. I hope your surgery on your spine goes well. Try to imagine it all going really well and helping you be better and no pain. Remember that fear is our imagination predicting the worst.

I’m 67 but made the unfortunate decision to allow a naturopathic doctor to insert hormone pellets in me. So I have to wait for that to all dissipate from my body. My oncologist told me she’s seen them last 2 years.

@mschoofs
Please know you are not alone in this. Dealing with cancer metastasis is not for the faint of heart. Your strength is shown in your attitude. Please come back often to update on your fight or just to vent. We do need to vent (and I do vent often🫢). That’s what we are here for, listening with the hope to ease your pain. Your good news is my good news! I pray that your cancer will sleep for along time. Hugs.