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Metastatic bone cancer with unknown primary: Anyone else?

Posted by christinaclc @christinaclc, Oct 21, 2025

I have metastatic bone cancer with unknown primary. No symptoms for over 6 months then my arm broke on a lesion and I am now receiving chemotherapy and radiation. Please help me

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christinaclc | @christinaclc | Dec 6, 2025
In reply to @jobo1031 "@christinaclc ~ Wow! So its you and me! Yes, they did a biopsy on my spine...." + (show)
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@christinaclc ~ Wow! So its you and me! Yes, they did a biopsy on my spine. I was in the hospital for 26 days in April/May of this year. I had massive blood clots & while they were trying to figure out why I was having them, they found the cancer. They did every test, scan, biopsy possible, and still no primary. When I started chemo in June the tumor board & my Oncologist chose to treat as Ovarian cancer and used those meds. The Gyn-Onc concluded its not a Gyno cancer, so here we are again. Interesting though, I also have a rod & 7 screws in my leg. Coincidence? I also hope & pray they know what their doing.

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@jobo1031 hi. So strange. The hospital I am going to is my second opinion with no diagnosis. They sent my biopsy to Mayo Clinic where a team of musculoskeletal doctors came up with non small cell carcinoma, myeloma or lymphoma so it’s scary. Putting trust into doctor’s opinions when I have a rare case and I would hope I am being treated for the correct diagnosis. It took over 6 months to get this far. I had my 7th chemo on Friday. I finished about 15 radiation treatments on 3 different parts of my body on 11/7. It’s been crazy and tiring. I am not a doctor person. Ugh. Let’s pray for each other 🙏🏽❤️

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coco46 | @coco46 | Dec 14, 2025
In reply to @jobo1031 "@coco46 ~ Hello! Yes, a biopsy was performed, also a liquid biopsy was done, blood testing,..." + (show)
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@coco46 ~ Hello! Yes, a biopsy was performed, also a liquid biopsy was done, blood testing, CT, etc. If theres a test or procedure, I've done it. Nothing pops up on a PET scan as well. I'm having another PET scan on Monday, but I don't really expect any new news. My Oncologist says about 10% of cancers are of unknown primary, and we may never know. Which in my opinion is the worst! I can't find any trials, support groups or anyone that has unknown primary, and the prognosis is terrible. I'm having a second opinion with UCSF in a week or so. I guess we'll see... Thank you for the reply and information, I appreciate it. (Sorry for the rant!)
P.S. what is IHC testing? 🤔

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@jobo1031 Immunohistochemistry, they use it to test the tissue samples for different antigens and responses. For me they used it to figure out the more specific type of breast cancer I had.

I hope and pray they can figure out what ever the best treatment is for you, even if they are not sure what the type of cancer is.

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coco46 | @coco46 | Dec 14, 2025
In reply to @christinaclc "@coco46 what type did they tell you that you have?" + (show)
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@coco46 what type did they tell you that you have?

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@christinaclc Stage 4 breast cancer, that's ER+, HER2-negative.

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christinaclc | @christinaclc | Dec 14, 2025
In reply to @coco46 "@christinaclc Stage 4 breast cancer, that's ER+, HER2-negative." + (show)
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@christinaclc Stage 4 breast cancer, that's ER+, HER2-negative.

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@coco46 malignant neoplasm from unspecified area of unspecified bronchus or lung

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jobo1031 | @jobo1031 | Dec 14, 2025

So those of us with unknown primary, how do you cope? Not knowing is the absolute worst for me personally. I just turned 59, had been in good health and this came out of the blue. When I was diagnosed, I thought, ok, I'll do everything they (Dr's) say and be done with it. Welp, I've done everything my 15 doctors have told me to do & there's no end in sight and no new news on the latest PET scan. It drives me crazy!

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tashmoon | @tashmoon | Jul 18 7:13pm
In reply to @jobo1031 "@christinaclc ~ Wow! So its you and me! Yes, they did a biopsy on my spine...." + (show)
Profile picture for jobo1031 @jobo1031

@christinaclc ~ Wow! So its you and me! Yes, they did a biopsy on my spine. I was in the hospital for 26 days in April/May of this year. I had massive blood clots & while they were trying to figure out why I was having them, they found the cancer. They did every test, scan, biopsy possible, and still no primary. When I started chemo in June the tumor board & my Oncologist chose to treat as Ovarian cancer and used those meds. The Gyn-Onc concluded its not a Gyno cancer, so here we are again. Interesting though, I also have a rod & 7 screws in my leg. Coincidence? I also hope & pray they know what their doing.

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@jobo1031 Hello. I wondered how ypu are doing months down the track from this chat?
I am same as you. Metastatic sarcoma ( being treated as Ewings) with undiagnosed primary. I am 55 and live in Australia.
In middle of treatment myself. It woukd be nice to connect.

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hsminc | @hsminc | Jul 19 10:08am
In reply to @jobo1031 "So those of us with unknown primary, how do you cope? Not knowing is the absolute..." + (show)
Profile picture for jobo1031 @jobo1031

So those of us with unknown primary, how do you cope? Not knowing is the absolute worst for me personally. I just turned 59, had been in good health and this came out of the blue. When I was diagnosed, I thought, ok, I'll do everything they (Dr's) say and be done with it. Welp, I've done everything my 15 doctors have told me to do & there's no end in sight and no new news on the latest PET scan. It drives me crazy!

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@jobo1031
I don’t know where you live but MD Anderson has always been great at finding the unknown primary. I would pursue that.
I vaguely remember that the Sarah Cannon cancer center in Tennessee also had a good reputation for finding unknown primaries but that was quite a few years ago.
Good luck and best wishes!

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hsminc | @hsminc | Jul 19 10:11am

I wrote this to another patient.
MD Anderson in Houston has always been excellent at finding the source of unknown primaries. I think that might be a good starter. You can refer yourself. Just google MD Anderson Cancer Center patient information.
Good luck and best wishes.

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tashmoon | @tashmoon | Jul 19 6:37pm
In reply to @hsminc "I wrote this to another patient. MD Anderson in Houston has always been excellent at finding..." + (show)
Profile picture for hsminc @hsminc

I wrote this to another patient.
MD Anderson in Houston has always been excellent at finding the source of unknown primaries. I think that might be a good starter. You can refer yourself. Just google MD Anderson Cancer Center patient information.
Good luck and best wishes.

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@hsminc thankyou for your comment and time. I will definitely explore MD Anderson and see what I can find.

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