Triple negative bone mets after hormone pos breast cancer.

sharm

After 5 years of remission BR 15-3 started slowly rising.  At 6 years, bone mets showed up on MRI with contrast (bone scans, cat scans, and pet scans negative).   Taking Xeloda and getting monthly Xgeva injection.  Br 15-3 returned to normal after several months of treatment, and no longer have hip pain.  After 8 months of treatment, am currently stable.  Scheduled to remain on this treatment as long as it is effective.  Would like to hear of other cases in which original breast cancer was hormone positive, but returned as triple negative.

HLB

Hi, sorry there have been nio replies. I think this actually happens a lot with the receptors changing. I recently was dx with spinal mets but they were not biopsied. I think if the tx would not work then he would probably bx them but since its working, may as well not. I wonder if it happens as a way to resist treatment. I had not taken tamox so now the letroxole might be working well due to me being naïve to hormonal tx. Maybe you've gotten some responses elsewhere. This is the first time I came to this section of the board. There's a bone mets thread in the stage 4 forum that's pretty active. Glad your tx is working. :-)

sharm

Thanks for the reply.  I'll check out the bone mets thread in the stage 4 forum.  It seems to me that biopsies on recurrence have become important.  My doctor changed my treatment plan due to the biopsy coming back triple negative.   

TectonicShift

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BlessedOne2

I just happened to see your post.  I was triple positive BC in 2009.  On Anastrozole for 2 years now.  Recent xrays show some degenerative changes and narrowing of spinal canal.   What symptoms did you have that lead to the latest diagnosis? 

HLB

Hi, mine was found by tumor marker. I didn't have any symptoms. They did a bone scan and the spinal mets were found. There were also some degenerative changes in knees and shoulder but it was easy to see the difference between those and the mets.

sharm

At first no symptoms, but tumor marker BR15-3 started rising slowly.  My doctor started checking me more closely and checking tumor markers monthly.  They continued to rise very slowly, but nothing showed on PET, CAT, or bone scans.  After 1.5 years hip started hurting.  An MRI revealed very small tumors in hip and lower spine.  Biopsy showed that it was breast cancer mets.  I've talked to other people whose doctors don't routinely check tumor markers.  Hope your treatment goes well.

MissingAlley

Sharm,

Be grateful your MO was doing tumor markers because mine did not.  Mine went from ER+ & Her2- to ER+ & Her2+.  My back started hurting a few months ago.  Cancer Bone Mets has taken over my lower spine and a few area area of the femur bone and hip.  Hope your treatment goes well,.  They a radiating my spine right now for pain relief.  I agree this stuff can drive you insane. 

coffeelatte

I read this thread last night and I kept coming back to something TectonicShift wrote, "Think about it. If your tumor is, say, 60% er+, then it's 40% er-. That means 40% of the cells in the tumor are er-."

I had never thought about it in that way before.  I guess I thought if your tumor was 60% ER+, then the rest of the tumor was made up of the progesterone receptor, or non-cancerous tissue.  So does that mean a breast cancer tumor is always 100% cancer and that it is either 100% ER+ or some mix of ER+ and ER-?

Annette47

I think your question was also answered on another thread that you posted it too, but my understanding is that the percentage ER+ refers to the percent of the cancer cells that have estrogen receptors - in other words that can feed on estrogen. Those same cells might or might not have progesterone receptors as well, which is why the ER+ and the PR+ numbers don't add to 100 ... both of mine were >90%. In your example of 60% ER+ that would mean that 40% of the cancer cells are not capable of feeding on estrogen and would not therefore be affected by Tamoxifen or AI's. The progesterone numbers would be relatively independent of that (although they do tend to go together).

coffeelatte

Annette thank you for the response. When I was first diagnosed I knew nothing about breast cancer.  Now that I am more than a year out I find I still get very confused by it all at times.  I do see what you mean about the receptors on the cancer cells.  Maybe that is why the breast cancer can metastasize to a different part of the body and have a different hormone status when biopsied.  This happened to a friend of mine and I have struggled to understand it.  She had an IDC that was ER+/PR+ but it metastasized to the spine in spite of treatment and it was ER-/PR-.  I have never understood how the cancer status changed, but maybe some of the original cells were negative?  So confusing.

jjseven22

I dont understand. I was er+pr+her2- in 2002. In 2012 relapased to METS. In 2014 the hormone positive cancer was given an NED then in the same sentence was told I have a tumor in the mediastinum that is now triple negative. I am not Brca gene positive. What is the response rate for someone with tnbc that is not brca gene positive. What therapy drugs has everyone had with a positive response. I am so confused and angry. I am on gemzar carboplatin. I am feeling hopeless.