New to The Group/Help
Hello everyone. I'm not sure if I posted here on this profile as I was locked out for while.
After over 11 years of NED, I now have met to the bones, and ?????? Not sure where else yet. The pain began several months ago in a rib on my right side. X rayed, nothing. Pain went away. About a week after that pain subsided, I felt a pop on one of my ribs on the LEFT side. Xrays, nothing. Then left side shoulder and hip pain. More xrays and all the Ortho guy thought he saw was some slipping of my lower discs. Pain started shifting around more and FINALLY my PCP recommended an ultrasound of my reconstructed breasts (benign), and to SEE MY ONCOLOGIST. The Ortho docs all knew my history and never recommended Onc or CT/MRI. CT was ordered at my Oncologist office and wouldn't you know it. METS to the bones........I've had this shit in me for MONTHS now while it steadily has gotten worse (pain). I go to see the Oncologist on Tuesday to get all the info on what showed up on the CT. I KNOW it's gotten worse since the scan was done. I'm on Oxycodone and it barely does a thing for the pain.
I'm angry that no one seemed to take my pain seriously along the way. Even my husband whom God love him, after many scares in the past 12 years (since dx, 11 out of active tx), asked at one point if I thought maybe it could be in my head.......He had no idea either. I'm scared for Tuesday. I don't know what I'm going to do if it's spread to organs, or even what options will there be for me. I guess in my ramblings I forgot to mention I did have a bone biopsy when confirmed mets to the bones. My stats are way different than the original BC so I'm not posting them until I see the Onc.
Idk, I somehow always knew this was going to happen. Even after all this time, and supposedly past the "danger" period of a recurrence.
Oh, and to add to all of this, our amazing son who is going to school at U of Alabama is having a mental health crisis and doesn't know about ME yet! Or our daughter working in AZ. We live in MD. I HATE this disease not only for what it's doing to me, but how it's going to F up my kids lives. We are all very close. Thankfully my husband is amazing and supportive, but this is a LOT for anyone to deal with.
I also am my Mom's POA (who has ALZ in a Memory Care group home nearby), and now I need my husband to be my POA, and figure out what the hell happens if something happens to me. Have a sister in State, but she is terrible with money and is in a ton of debt. I honestly think she'd use Mom's money to get out of her situation. She's alone here and her kids are scattered over the US as well.
Welp, if you made it to the end of that rant, THANK YOU for listening. This forum helped me SO much after my initial diagnosis. I'm sure I'll be asking a ton of questions after Tuesday.
Best to you all,
Sharon aka Pupfoster1
meow13 Member Posts: 1,357
I am so sorry you are having this on top of worrying about your children and Mom. Mets to bones is not uncommon, get a good oncologist and come up with a plan. There are very good treatments out there. God bless you and let your family take on your Mom/children for now.0
thanks Meow. Sorry I’m just getting back to you. I really don’t like this new format. Lol. Oh well it’s trivial in the grand scheme.
Thanks for the words of encouragement. I am triple neg which is strange because I was ER/PR+ Her2- last go round. Unfortunately I do NOT qualify for Keytruda. Dang i. I forget the protocol I’m on. G something and P something. Every other time off the P. Two weeks of tx then a week off.
I’m having to learn another language again since they treat this so differently.
today has been a BAD pain day. I’m getting ready to post a separate thread about that topic.
Thanks for your feedback. I hope you continue to do well ♥️0