Breast cancer spread to liver, skull, spine, ribs, hips etc.

I’ve was on Anastrozole for 5 yrs for breast cancer I too had lumpectomy and my doctor felt I no longer needed to continue with Anastrozole. I feared I had no barrier against my cancer returning and after reading about your health I’m really nervous about it returning I guess once you had cancer you’d always fear it’s nasty return.
Thanks for your post! Rosy54

Hi,
I don’t know anything about choosing Proton?
Thank you 🌈
Grateful 26

I have same osseous spread. I take Xgeva for bone strengthening and pain. It keeps most pain at bay with exception of my back.

My protocol has been. Stage4. Started with Stage 1 but aggressive type. Did 2 months of Doxy Tax. Then discovered spread to bone. Did radiation. Started Ibrance and Fossamax. Stopped working in 4 cycles. Started Xeloda. Worked for 8 months keeping spread stable. It stopped with spread in liver. Started Enhertu yesterday. Trying to be hopeful.

I wish you the best. Do you mind sharing the type you had?

Hello Marcia115, can you elaborate on the proton treatment you received? I've recently been diagnosed with MBC and my daughter and I have bounced around taking immunotherapy and/or holistic treatments. Thank you in advance.

I too am 72, living with stage 4 metastatic BC for 11 years now (46 years since original mastectomy) I was on Letrazole for 10 years with minimal side effects (mild neuropathy & fatigue) keeping the spread to my bones (sternum) at bay. I went off for a few months and next scan showed spread to liver, ribs spine & scull.
So now I am on Ibrance, gabapentin and discussing Xgeva instead of Fosamax. I have used medical marijuana since it was legal in Oregon (and now in the state where I currently live) and sporadically for fifty years. I’d be lost without it.
I have managed to stay away from any major chemotherapy and avoid opioid pain killers (except for a few days after breaking my shoulder).
I’ve kind of gone on, but I’ve a number of years dealing with this: YOU HAVE TO BE YOUR OWN ADVOCATE! Question your doctors and educate yourself. Right now at almost 73 I am making different decisions than in my twenties (I mean at 26 my oncologist suggested I do heavy duty chemo and have a hysterectomy!) I went east to build boats and had my son five years later. I’m a firm believer that “quality of life” doesn’t have to be a trade off to longevity.

Sorry to hear that! I have the same diagnosis and have been on Palbociclib and Letrozole for 8 months. Bones and lung doing well but liver not responding adequately to this treatment. I believe it is a long road of going from one medication to the other - hopefully gaining time to possibly benefit from something new which isn’t on the market yet. Hang in there!

@rosy54 I had a Breast Cancer Index at the 5 year point, but it can be done anytime because it uses your stored specimens from pathology. It tells you whether extended hormonal therapy is of benefit (yes or no) and also whether your risk of recurrence is high or low, on a spectrum (my risk was 5.2 labelled high at the time with cutoff at 4.7 as I remember, but they have since changed the labelling). The BCI is now in NCCN guidelines. It might be reassuring.

I printed out the paperwork myself and brought to MD, and coordinated getting the specimens, though MD can do that. I also applied for financial assistance.

I also have metastatic breast cancer. Original cancer was in 2013, stage 2B lobular. Had double mastectomy with chemo ACT and five years of letrozole. My cancer returned in 2022 in porta hepatic area ( near liver but not in it. It is now in gallbladder and I have a drain for bile. I tried Kisqali for a short time but tumors are growing but now will be starting Enhertu chemo in a week or two. I am 75 and have been very active and volunteer at my hospital. I feel scared about what is to change me next.

@meme5 this sounds hard. If you don't mind me asking, how did you discover the metastasis? I am 8+ years out from diagnosis and my oncologist doesn't even see me anymore. I am wondering how I will ever know!

Good luck with the Enhertu. I hope you will continue volunteering. I can imagine being scared.