Just diagnosed with metastatic breast cancer to the bone marrow.

Posted by rigal @rigal, Dec 31, 2023

BCM diagnosis since 3/20. This week a new diagnosis of cancer spread throughout bone marrow. Can’t find much support on line so wondering if anyone is out there going through the same diagnosis? What treatment options are there? Thanks

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

Good morning, @rigal. It would help me out a little more if you could tell me about your diagnosis. I’m not sure what BCM means unless you’re saying it’s bone marrow cancer? What diagnosis did you just receive? Is it some form of leukemia or myeloma?

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Hi Lori:
Thx for getting back to me since 3/20, I have a diagnosis of stage 4 metastasize breast cancer to my spine, skull, ribs, femurs, clavicles etc. this week I had bone scan, 2 Ct scans and an mri for liver along with labs. The Ct scans and MRI were inconclusive but for the first time, radiologist called out “an intense diffuse bone marrow tumor infiltration”.” Progression of disease in skeleton/bone marrow” I’m honestly so anxious and not sure what to expect for treatment, except chemo, bone marrow or stem cell Up til this scan, I was doing ok day to day. But now…..

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@rigal

Hi Lori:
Thx for getting back to me since 3/20, I have a diagnosis of stage 4 metastasize breast cancer to my spine, skull, ribs, femurs, clavicles etc. this week I had bone scan, 2 Ct scans and an mri for liver along with labs. The Ct scans and MRI were inconclusive but for the first time, radiologist called out “an intense diffuse bone marrow tumor infiltration”.” Progression of disease in skeleton/bone marrow” I’m honestly so anxious and not sure what to expect for treatment, except chemo, bone marrow or stem cell Up til this scan, I was doing ok day to day. But now…..

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Hi @rigal, My sincere apology for not picking up on your MBC before when I answered your discussion posting. Usually before writing, I’ll look at previous posts to give me more information. I would have realized right away, had I done a little reading that you meant MBC. My experience is in cancer within the bone marrow causing leukemia. So that’s where I erred.

I’m wondering if you’ve chatted with anyone in this discussion group about MBC? You’ll be able to connect with members, @zolamiller7 @eku @resort @miles5513 @leeann66 @meme5 @wandering @adanab @boogz @tessspike @ampeltekian @hockeymom25 @mjwhearts22 @mssewest and many more who have shared their experiences with breast cancer and hopefully offer you encouragement and positive news.

Metastatic Breast Cancer; Anyone Else?
https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

I wish you all the best in this new year. Have you had a consultation yet regarding your next steps in treatment?

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@loribmt

Hi @rigal, My sincere apology for not picking up on your MBC before when I answered your discussion posting. Usually before writing, I’ll look at previous posts to give me more information. I would have realized right away, had I done a little reading that you meant MBC. My experience is in cancer within the bone marrow causing leukemia. So that’s where I erred.

I’m wondering if you’ve chatted with anyone in this discussion group about MBC? You’ll be able to connect with members, @zolamiller7 @eku @resort @miles5513 @leeann66 @meme5 @wandering @adanab @boogz @tessspike @ampeltekian @hockeymom25 @mjwhearts22 @mssewest and many more who have shared their experiences with breast cancer and hopefully offer you encouragement and positive news.

Metastatic Breast Cancer; Anyone Else?
https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

I wish you all the best in this new year. Have you had a consultation yet regarding your next steps in treatment?

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no, I haven't. My doctor was away for the holiday. I'm expecting to hear from her today. thank you for your help in keeping me calm

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@rigal

no, I haven't. My doctor was away for the holiday. I'm expecting to hear from her today. thank you for your help in keeping me calm

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It’s so stressful waiting for results of labs and tests…and then waiting for the subsequent consult, isn’t it? It’s great that there is transparency with our medical records but it can be a doubled-edge sword when it comes to seeing results, often days or weeks, before we can get the doctor’s input on what they actually mean for us.

I hope you hear back today so you can get some clarification as to what next steps you can take to get back to normalcy in your life. I’m glad I was able to help keep you calm. I’ve learned how to really manage my anxiety level over the past few years to where not much bother’s me anymore. It was challenging but now I ignore my mind telling me to panic, learned to ignore those pesky ‘what if’ thoughts and turn it around to “Well, what if every thing turns out just fine!” Living with constant stress over ‘what if this happens’ just robs us of precious time. Ha, my husband refers to me as an ostrich sometimes because it’s like I live with my head buried in the sand…shutting out all the negative thoughts. It works for me! I picture myself as a little girl patting my hands over my ears while singing la la la la lah, blocking out things I don’t want to hear.

Sending positive thoughts your way today that you get good news. I’d love to hear what you learn today from your doctor. Hugs. Lori.

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@loribmt

It’s so stressful waiting for results of labs and tests…and then waiting for the subsequent consult, isn’t it? It’s great that there is transparency with our medical records but it can be a doubled-edge sword when it comes to seeing results, often days or weeks, before we can get the doctor’s input on what they actually mean for us.

I hope you hear back today so you can get some clarification as to what next steps you can take to get back to normalcy in your life. I’m glad I was able to help keep you calm. I’ve learned how to really manage my anxiety level over the past few years to where not much bother’s me anymore. It was challenging but now I ignore my mind telling me to panic, learned to ignore those pesky ‘what if’ thoughts and turn it around to “Well, what if every thing turns out just fine!” Living with constant stress over ‘what if this happens’ just robs us of precious time. Ha, my husband refers to me as an ostrich sometimes because it’s like I live with my head buried in the sand…shutting out all the negative thoughts. It works for me! I picture myself as a little girl patting my hands over my ears while singing la la la la lah, blocking out things I don’t want to hear.

Sending positive thoughts your way today that you get good news. I’d love to hear what you learn today from your doctor. Hugs. Lori.

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Like you, I tend to be a positive upbeat gal and will deal with what comes my way. On Thursday, I’ll see my doctor and hopefully she will put together a course of action which may essentially present no change as of now. I realized that I was on oserdu for 6 weeks prior to the scan… prior to it perhaps, even kicking in. So I’ll try to keep my thoughts and fears in check until after I speak with my doctor. Thank you for your “arm around my .shoulder” it’s been wonderfully reassuring. Deb

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@rigal

Like you, I tend to be a positive upbeat gal and will deal with what comes my way. On Thursday, I’ll see my doctor and hopefully she will put together a course of action which may essentially present no change as of now. I realized that I was on oserdu for 6 weeks prior to the scan… prior to it perhaps, even kicking in. So I’ll try to keep my thoughts and fears in check until after I speak with my doctor. Thank you for your “arm around my .shoulder” it’s been wonderfully reassuring. Deb

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I don’t have any specific experience with MBC to share. But I just wanted to send you love and strength to get through this challenge. Know that you are doing your best. Know that you will find the strength to do what you need to do. I hope the dr’s consult goes well. I would bring a pen n pad to take notes. And I would consider bringing a smart friend or relative who can help process all the information. I am older and i find the information sometimes comes too quickly. If that happens, ask the dr to slow down or repeat critical things.

Also, when i was going through a really difficult health challenge, a friend recommended a book by pema chodron called when things fall apart. I found a lot of comfort in there and still turn to it when life events are difficult to process. Sending you friendship, kindness, and strength.

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FJC:
thank you so much for your words. I have put an audio book of When things fall apart on hold.
I appreciate the suggestion.
Deb

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Deb, I love audiobooks too! I hope it becomes available for you soon. ☮️♥️ FJC

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Hi @rigal, I'm jumping in to add my welcome and to let you know that I've moved your discussion about breast cancer metasticizing to the bone marrow to the Breast Cancer Support Group here: https://connect.mayoclinic.org/group/breast-cancer/

I'm also tagging fellow MBC-ers like @deamo5339 and @mtt, who have experience with mets to the bone marrow. I think @katgob and @auntieoakley may also have experience and support to add to this discussion.

Rigal, wishing you all the best for your appointment tomorrow. I look forward to hearing what you learn.

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