Out of lurking with mets diagnosis

Thank you! 

In the "are you KIDDING me?" dept.... 

At my biopsy yesterday it was discovered that the tumor on my spine is actually NOT malignant.  It is a benign, although an unusually aggressive and large-for-its-type, vertebral hermangioma.  It has grown to take up most of my L1 vertebrae and has fractured what’s left of the bone (I’ll need treatment to keep it from completely shattering and paralyzing my legs permanently [seriously, that's how they put it]…but, since IT’S NOT CANCER, that news still seems good by comparison)  So, while I’m restricted to doing things that are low impact until the treatment is done (i.e. guess I’ll have to give up jogging and car accidents for the near future), this is extremely good news.

Apparently, because of its size and density, the team of radiologists (who took a CT scan to help guide the biopsy) looked at all the tests while I was still there said there was literally no way any doctor could have told it apart from a malignant tumor and that’s why everyone was convinced it was malignant and, thus, gave me the worst news.  No one’s fault but thank goodness my oncologist wanted a biopsy.

I still have some other issues that need to be resolved (like why I’ve been anemic for the last 9 months…that will be treated with IV iron infusions and checked regularly…they are now wondering if I Celiac's and that’s causing the anemia…so that’s the first thing they’ll test for).  I also have a severe vitamin D3 deficiency but can hopefully treat that with supplements.  Other than the iron issue and the vit. D3 issue, my other labs came back looking good so I'm back to the Stage 1b diagnosis with 3 month check ups and the garden variety aromatase inhibitor complaints.  Even those don't seem so bad any more. 

So…HOORAY (HOORAY) for not having metastatic cancer!  Right now I’m feeling totally drained from this emotional rollercoaster ride I’ve been on, but YAY!

Thank you all for your warm thoughts and support.  I'll be back on the boards lurking and sending Light and virtual hugs to all.  Elisabeth

EDIT TO ADD:  I am removing the Stage IV/mets diagnosis on my signature line right now.. forgot to do it before submitting the post...sorry!

And I'm back.  Oncologist appt. today and it turns out that I do, in fact, have a hemangioma only it's two vertebrae lower (on L3) than what they are now sure is bone metastasis (on L1).  The radiologist who did the MRI w/contrast (and found both the L1 tumor and the L3 hemangioma) has asked to see the CT scan that the radiologist at the imaging center took when telling me it was only a hemangioma.  At this point, the treatment is going to be staying on Femara, 10 courses of radiation (in January as I'm going away for three weeks over the holiday), and monthly Xgeva shots.  They hope that this will keep the L1 vertebrae from continuing to fracture (which it apparently is already doing) and allow it to heal.  I'm not a candidate for any type of stabilization/repair using cement, unfortunately (there's a nice medical word for that but I'm too tired to look it up...).

When all this transpired, the MO who initially sent me for the biopsy that was never done (to rule out myeloma) was in the process of leaving the center to move to another state.  I get the impression from some comments made today that she was so busy with last minute care transfer that not enough questioning may have been done, yadda yadda.  My new MO (in the same center) seems great and I've heard good things about him (especially that he is VERY thorough) so I'm satisfied.  He feels that my tumor markers aren't reliable but that it appears that my anemia may be caused by the bone/bone marrow metastasis.  I had two weekly infusions of Feraheme that put me back up to low normal in today's labs so he is going to keep an eye on that, along with my low D3 levels.  He's not going to order a biopsy at this point because he feels that I am so highly ER/PR positive that it's unlikely any receptor status would have changed with only the one spot.  A biopsy will be saved for a later date if we start to see significant progression.  He may have another scan ordered in January, too.

The insurance had no issues with agreeing to the Xgeva treatment (although the center told me that they might want me to do Zometa first) so was able to get my first shot today.  See my MO again on 1/10 when we'll set up the radiation tx.  Have had to move my next phase of reconstruction surgery back from 1/18 to after 2/1 but that's okay.

Other than feeling a bit like a yo-yo, I still feel incredibly fortunate to have doctors on top of this and to have caught the mets so early (despite all the confusion)...and that it appears that Femara jumped right in and started doing its thing. 

Thank you all for your kind words before, by the way!  I continue to lurk continuously and send Light and hugs to all.   Elisabeth