Anyone else living with breast cancer and bone metastasis?

Posted by pegannie @pegannie, Jan 22, 2020

My breast cancer has metastasized to the bones. (axial skeleton) I knew something was up due to the intense pain in my hip and leg. My oncologist said the cancer in my bones is the primary issue now - not the breast cancer. He said there is no cure but it can be treated with pain meds. Others have told me that you can live a long life with this, just painful....others have said once it is in your bones you don't have long to live - up to a couple of months? Does anyone have any comments?

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Profile picture for san7234r @san7234r

Hi my oncologist wants me on kisqali and letrozole for bone met in shoulder from Breast cancer 14 years ago
Kisqali concerns me because I am on Hydrocodone 4 x daily for my back and spine pain

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Hi: I’m on Kisqali and Faslodex and handle well. I have MBC and have most of my cancer cells are in my spine and have mass on my sacrum. What does Hydrocodone do for you? Have neuropathy from too much radiation on sacrum.

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Profile picture for jconsiglio55 @jconsiglio55

Hi: I’m on Kisqali and Faslodex and handle well. I have MBC and have most of my cancer cells are in my spine and have mass on my sacrum. What does Hydrocodone do for you? Have neuropathy from too much radiation on sacrum.

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@jconsiglio55, I want to offer a belated welcome. It sounds like you've been getting radiation to help shrink the mass on your sacrum and it has resulted in neuropathy. Does the mass cause pain and radiation helped to reduce the mass and alleviate pain?

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Profile picture for leeann66 @leeann66

Hello, when I was first diagnosed in June 2020 with MBC, it had spread to multiple bones which included both hips and my left femur. On Kisqali and Anastrozole since July 2020 and all bone lesions have metabolically resolved! Glad you are getting a scan I believe that is the best way to really know the situation and being your own advocate is a must! Good luck, let us know how the scan goes!

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@leeann66 how long did it take for your bone mets to resolve after starting your medications?

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Hello, when I was first diagnosed in 2020 and was put on Kisqali , after six months, the bone mets had resolved.

Unfortunately, a year and a half later they came back and two subsequent treatments did not do anything for them, they grew.

November 1, 2022 I started the clinical trial with Dato-Dxd (now called Datroway and available in the US) and currently with the exception of my breast all seven areas in my bones and lymph nodes where the Mets were, are in complete remission according to my oncologist.

I am now looking at surgery to remove either the initial tumour in the breast, which is still there, or remove my breasts, I see the surgeon February 23.

My last Datroway chemo was April 8 of 2025 and I’m currently on tamoxifen.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @pammyt

I appreciate you sharing your story. As @auntieoakley said we are never really free from cancer. I look at cancer as a chronic condition. I had my first surgery in 2003 then the second was in 2005. I had rechecks every year after that until 2012 when very reputable doctors said it was highly unlikely for a return. In 2016, another problem occurred that required some examination. I requested they do the test that originally diagnosed the cancer. That is when the third lesion was found. From that I learned the importance of advocating for yourself. I certainly wish you all throw best as you deal with bone METS. How are you feeling now?

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@hopeful33250 , Hi I am doing ok, The summer was difficult because I lost my husband unexpectedly to esophageal cancer. He was my rock and he was gone within 4 months of discovering he had cancer. I'm staying strong. Hope you are doing well,

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Profile picture for leeann66 @leeann66

Hello, when I was first diagnosed in 2020 and was put on Kisqali , after six months, the bone mets had resolved.

Unfortunately, a year and a half later they came back and two subsequent treatments did not do anything for them, they grew.

November 1, 2022 I started the clinical trial with Dato-Dxd (now called Datroway and available in the US) and currently with the exception of my breast all seven areas in my bones and lymph nodes where the Mets were, are in complete remission according to my oncologist.

I am now looking at surgery to remove either the initial tumour in the breast, which is still there, or remove my breasts, I see the surgeon February 23.

My last Datroway chemo was April 8 of 2025 and I’m currently on tamoxifen.

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@leeann66, good to hear from you. I will be interested to hear how your appointment with the surgeon goes at the end of the month and what you learn for next steps.

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I'm going to add this new research on finding out if treatments for bone mets is working: There is new trial research, shared on a bulletin from my Cancer Center in Seattle, that when Breast cancer metastasizes to the bones, there hasn't been a reliable way to tell whether treatments people are on are working, when mainly in the bones. Patients may continue with ineffective treatments longer than necessary. There is a trial that followed 138 patients over 3-5 years that has shown that with FDG-PET/CT imaging (using sugar as a contrast), docs can predict progression-free survival after just 12 weeks. The scan shows how active cancer cells are, not just showing their shape or size.....whether the treatment is working, is an effective one. Sounds like a good development.

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Profile picture for hm10 @hm10

@leeann66 how long did it take for your bone mets to resolve after starting your medications?

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@hm10 & @leann66...... I found out more info on the recent trial using a particular scan-type to determine if a treatment is working, as early as possible.
I went ahead and researched online to see if I could find more on this study, and there was much more specific information! This looks like a game changer in finding the best treatment for those with bone metastasis, much more quickly.
"The study’s lead investigator, Jennifer M. Specht, MD, a medical oncologist at the University of Washington and Fred Hutch Cancer Center, presented the results of the FEATURE trial (EA1183, NCT04316117) at the 2025 San Antonio Breast Cancer Symposium. Heather A. Jacene, MD, a nuclear medicine physician from Brigham and Women’s Hospital and Dana-Farber Cancer Institute, co-led the trial with Dr. Specht." It also said "This multi-center trial involved investigators and patients at 35 hospitals and cancer centers across the United States and in Ireland. It received support from the National Cancer Institute..." So it's not just at my cancer center.
https://ecog-acrin.org/press-release-an-ecog-acrin-imaging-study-solves-a-long-standing-gap-in-metastatic-breast-cancer-research-and-care-accurately-measuring-treatment-response-in-patients-with-bone-metastases/

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I had breast cancer that metastasized to my bones. I was diagnosed May of 2025 with the bone cancer. I take an AI and get Xgeva shots monthly. You can live several years with treatment. It is important to try to stop the spread to major organs. Find a good Oncologist and trust the Lord. I’m not in pain most of the time and have not had to take any pain meds. I pray you will do well and have years yet to enjoy.

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I hope and pray for you all. I was diagnosed with breast cancer that metabolized to my bones in January of 2025. Using same treatment s as mentioned above. In March this year cancer was found in my liver. It has been constant searching as even now my cancer numbers are going up. Stay vigilant. I don't understand why my cancer is so unstable. Otherwise I feel healthy and well. No pain. No cancer in my bones currently (hopefully it stays that way). Still using xgeva.

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