Bone Only Mets

Posted by pammyt @pammyt, Aug 10, 2021

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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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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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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Thank you, I thought I pasted that in but…………

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@colleenyoung

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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The bone scan went well. I read the report yesterday and it appears the bone lesions are still throughout the bones but are stable compared to the scan in April. There is a mild uptake in the bone connecting to the pelvis, but not a significant change since the last scan. There is a lesion in the right tibia, but it is stable as seen in scans back into 2018. I don't understand why I have nerve pain in my leg with burning and numbness from the shin to my foot. I have been complaining about it for months but not getting answers, it must be caused by the stable lesion in my tibia as there are no fractures (shin splints). Otherwise, I will just continue on Letrozole and oxycodene and ibuprophen for pain. My labs look good, in fact much better since I am no longer doing chemo. I had a CT chest/abd/pelvis as well. That report looks good. There is a 0.8cm nodule on my adrenal gland. The report states it is likely an adenoma but should be monitored in follow up. I will meet with my oncologist tomorrow and ask questions, but pretty sure we will stay on the same course.

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@pammyt

The bone scan went well. I read the report yesterday and it appears the bone lesions are still throughout the bones but are stable compared to the scan in April. There is a mild uptake in the bone connecting to the pelvis, but not a significant change since the last scan. There is a lesion in the right tibia, but it is stable as seen in scans back into 2018. I don't understand why I have nerve pain in my leg with burning and numbness from the shin to my foot. I have been complaining about it for months but not getting answers, it must be caused by the stable lesion in my tibia as there are no fractures (shin splints). Otherwise, I will just continue on Letrozole and oxycodene and ibuprophen for pain. My labs look good, in fact much better since I am no longer doing chemo. I had a CT chest/abd/pelvis as well. That report looks good. There is a 0.8cm nodule on my adrenal gland. The report states it is likely an adenoma but should be monitored in follow up. I will meet with my oncologist tomorrow and ask questions, but pretty sure we will stay on the same course.

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Please let me know if you can, if the doctor recommends a change or stay the course. I am thinking about you daily, even though I am kind of challenged on his website. Lol . Are you taking any oral chemotherapy besides the letrozole? I am glad they are managing your pain.

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@auntieoakley

Please let me know if you can, if the doctor recommends a change or stay the course. I am thinking about you daily, even though I am kind of challenged on his website. Lol . Are you taking any oral chemotherapy besides the letrozole? I am glad they are managing your pain.

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I am not taking oral chemotherapy. I tried Ibranze and Verzenio at various dosages. I could not tolerate them. I opted to just do the Letrozole and so far it seems to be doing the job. I will update on the Oncology visit tomorrow.

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@auntieoakley

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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My cancer journey started in January 2008 after I went to the doctor due to a rash on my hand, but also a lump in my right breast that had worried me for months. I was given a cream for exzema but rushed right away for an ultrasound a biopsy. It turned out to be stage 1 invasive carcinoma. I opted to have a mastectomy thinking that would allow me to go back to work faster and not have to deal with radiation. I had reconstructive surgery with a Tram flap the same day and was out of the hospital 2 days later. I was told I had zero to 10% chance of recurrence by the Oncologist I saw at that time. 13 years later I found out it was mets in my bones. I never did chemo, radiation or tamoxifen. After the first 5 years, I believed I was cured and would no longer face breast cancer unless it was in the other breast. I didn't know it could go to the bones years later.

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@pammyt

My cancer journey started in January 2008 after I went to the doctor due to a rash on my hand, but also a lump in my right breast that had worried me for months. I was given a cream for exzema but rushed right away for an ultrasound a biopsy. It turned out to be stage 1 invasive carcinoma. I opted to have a mastectomy thinking that would allow me to go back to work faster and not have to deal with radiation. I had reconstructive surgery with a Tram flap the same day and was out of the hospital 2 days later. I was told I had zero to 10% chance of recurrence by the Oncologist I saw at that time. 13 years later I found out it was mets in my bones. I never did chemo, radiation or tamoxifen. After the first 5 years, I believed I was cured and would no longer face breast cancer unless it was in the other breast. I didn't know it could go to the bones years later.

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My heart breaks for you to be learning this, at this late date. My admiration is for your courage to deal with this head on. I believe many women who are at more than that 5 or 10 year mark believe they are safe. I have never truly felt safe since the first diagnosis, you are an inspiration to all of us. Thank you for continuing to share your story. I am looking forward to hearing about your doctor visit.

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@auntieoakley

My heart breaks for you to be learning this, at this late date. My admiration is for your courage to deal with this head on. I believe many women who are at more than that 5 or 10 year mark believe they are safe. I have never truly felt safe since the first diagnosis, you are an inspiration to all of us. Thank you for continuing to share your story. I am looking forward to hearing about your doctor visit.

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Thank you for sharing as well. It is nice that there are people out there who are going through similar trials. We have no choice but to push on. We are created to be survivors, no matter the hardship. At least that is how I believe. Hang in there!

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@pammyt

Thank you for sharing as well. It is nice that there are people out there who are going through similar trials. We have no choice but to push on. We are created to be survivors, no matter the hardship. At least that is how I believe. Hang in there!

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Don't let fear live in you. Every single day is a journey, and a new discovery.

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@pammyt

Thank you for sharing as well. It is nice that there are people out there who are going through similar trials. We have no choice but to push on. We are created to be survivors, no matter the hardship. At least that is how I believe. Hang in there!

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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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