Got the talk today

bettysgirl

Got the confirmation that the spot in my sacrum and spine is metastatic. Due to the fact that the ER/PR was+ but very weak, she has suggested xeloda and xgeva. When I told her that my back pain had escalated after the biopsy she said she also wanted to refer me to radiology to try to get that under control. For some reason she also wants to do genetic testing. I told her my daughter had done the tests and was all negative. I was somewhat frustrated that w and seemed to not know that I had been being evaluated for the mitral leak and when I asked her if I needed to keep the next appointment for the echo she said yes, it will be good to get a baseline🤦 I am also on Xarelto for history of DVT. Idk how xeloda will go with the heart history and blood thinners but maybe that it a discussion for the cardiologist. Any input will be great. Thanks

moth

oh you scared me - "the talk" on stage 4 forums is usually when oncologists tell you there are no more treatments and they're referring you to hospice.

But I'm so sorry you got the stage 4 diagnosis. Gutting. Take heart, there are many treatment options and bone is probably the most favorable prognosis.

About the genetic testing, 2 things: just because your daughter tested negative doesnt mean you would. You might not have passed it on (Remember you have 2 x chromosomes but only pass one on)

Also sometimes they want to do testing on the tumor, and that's different than testing you. The tumor can develop mutations which are independent of the person who has the tumor. That's usually called next generation sequencing and companies such as foundation one, tempus do it. It can be done on tumor sample or blood.

I suggest you join the xeloda thread and ask about the heart issues- someone there might know more

Hugs to you

bettysgirl

Thanks! Sorry to scare you. I still have way too much to learn.

exbrnxgrl

I thought the same thing as moth! I’m glad we were wrong. I have lived with a bone met for ten years. I have no great advice other than not to put your foot in the grave before you have to. I recently was in touch with the woman who went with me to my bone biopsy all those years ago. She is a breast cancer survivor. We both agreed that neither of us would have imagined I would be here 10 years down the road. I may be an outlier but you never know. It could be anyone and it could also go bad in a heart beat. A weird way to live but more of us are living longer (though not enough) so I remain hopeful . Take care