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?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

I am not a medical person, but I do know that the mother of a priest from a neighboring parish had bone cancer for quite a long time. I knew him for about 4 years when he went to another diocese job last year. The only indication that there was anything going on with this woman was a limp. She was probably in her 70s. There was no holding her back. I have not heard that she has passed, so believe she is still going strong. Try not to listen to negative information and keep a positive attitude. As a BC survivor twice, I know how scary it all is. Don’t listen to negativity from anyone. Good luck.

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@pegannie
You poor dear... how troubling that news must have been for you. When I read the information available on the subject, it seems to imply that much depends on age, treatment(s), types, and other variables, and that the overall five-year survival rate can look relatively positive, all things considered. I would suggest that you write down every question which comes to mind and march back into your oncologist's office and ask her/him. (What is s/he going to do for the pain, what does s/he guestimate as the long-term survival odds, what treatments does s/he have in mind for your particular case, etc.) And, if you don't know what else to ask, request that your oncologist explain, slowly, everything else which you should know about regarding this development. You have the right to learn as much or as little as you're comfortable with... but only your oncologist will be able to assess your particular case.

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Hi @pegannie, @elizm and @sandyjr are right. How long one lives with breast cancer that has metastacized to the bones varies from person to person. It depends on so many different and individual factors. This important part to focus on is "living with". I'd also like to tag other members who are living with metastatic breast cancer like @mom23boys @lynniesf @michsnyder @lynnydave12 and @wandering

Here are some other discussions you may be interested in reading and learning about different treatment options:
– Metastatic breast cancer, in bones: Trouble eating https://connect.mayoclinic.org/discussion/medistatic-breast-cancer-in-bones/
– Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/
– Bone Metastasis in Pelvic and Spine https://connect.mayoclinic.org/discussion/bone-cancer-in-pelvic-and-spine/

Peg, has your oncologist discussed treatment options with you? What type of breast cancer do you have?

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@sandyjr

I am not a medical person, but I do know that the mother of a priest from a neighboring parish had bone cancer for quite a long time. I knew him for about 4 years when he went to another diocese job last year. The only indication that there was anything going on with this woman was a limp. She was probably in her 70s. There was no holding her back. I have not heard that she has passed, so believe she is still going strong. Try not to listen to negative information and keep a positive attitude. As a BC survivor twice, I know how scary it all is. Don’t listen to negativity from anyone. Good luck.

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You are so right! Thank you so much for your encouraging words.

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@elizm

@pegannie
You poor dear... how troubling that news must have been for you. When I read the information available on the subject, it seems to imply that much depends on age, treatment(s), types, and other variables, and that the overall five-year survival rate can look relatively positive, all things considered. I would suggest that you write down every question which comes to mind and march back into your oncologist's office and ask her/him. (What is s/he going to do for the pain, what does s/he guestimate as the long-term survival odds, what treatments does s/he have in mind for your particular case, etc.) And, if you don't know what else to ask, request that your oncologist explain, slowly, everything else which you should know about regarding this development. You have the right to learn as much or as little as you're comfortable with... but only your oncologist will be able to assess your particular case.

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Yes, thank you for your response. I have started writing down questions as i think of them, so I can find out more answers when I see him next.

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one question to ask: "Are the metastases the same type of cancer that my breast cancer was/is?" My U of M oncologist ordered a bone biopsy to determine if the metastases were the same variety. The biopsy came back yes, so my body hasn't created a new "variety" for me to deal with. Also make sure you keep a list of where it hurts - my other oncologist said that bone metastases often don't occur in the joint areas (regardless of how much hip pain I have) and that they don't occur far away from your trunk... like not fingers and toes. Best of luck -- I certainly can identify with your fears.Also ask if OT or PT can help with pain.

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I have metastatic breast cancer in multiple bones only. I have been having pain in lower right leg for months but it has not been addressed. I am finally getting a bone scan today. Just wondering if anyone has been told it doesn't usually spread below hips and pelvis. This is what my local oncologist has told me.

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@pammyt

I have metastatic breast cancer in multiple bones only. I have been having pain in lower right leg for months but it has not been addressed. I am finally getting a bone scan today. Just wondering if anyone has been told it doesn't usually spread below hips and pelvis. This is what my local oncologist has told me.

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I found an article on bone metastasis on breastcancer.org that discusses what bones are likely to be affected, it might also have some information to help you when discussing this with your doctor. You may have to be your own advocate for this. I am a survivor as well and find this to be hard in reality. Are you comfortable telling me more about your breast cancer journey?

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@pammyt

I have metastatic breast cancer in multiple bones only. I have been having pain in lower right leg for months but it has not been addressed. I am finally getting a bone scan today. Just wondering if anyone has been told it doesn't usually spread below hips and pelvis. This is what my local oncologist has told me.

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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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@pammyt

I have metastatic breast cancer in multiple bones only. I have been having pain in lower right leg for months but it has not been addressed. I am finally getting a bone scan today. Just wondering if anyone has been told it doesn't usually spread below hips and pelvis. This is what my local oncologist has told me.

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Hi @pammyt, here is the article that @auntieoakley referred to
- Bone Metastasis: Symptoms and Diagnosis https://www.breastcancer.org/symptoms/types/recur_metast/metastic/bone

According to the article, "the most common sites [of bone mets] are the ribs, spine, pelvis, and long bones in the arms and legs."

@leeann66, that's amazingly encouraging news that your bone lesions resolved with medication.

Pammy, how did the bone scan go? Are you currently on treatment for the existing bone mets?

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