Worried about bone mets

TDF

I was diagnosed with invasive lobular back in 2006, and after mastectomy & dose dense chemo, I've been in remission since.

Now, after years of being stable, my tumor markers have suddenly nearly doubled (still just within 'normal' but a big jump from where they were), my blood counts are out of whack (anemia, low platelets) and I've developed pain in a specific spot on the back of my skull. I'm due to see my oncologist in a little over a week for more blood tests to recheck my counts, but now with the bone pain on my skull, I'm growing increasingly worried that my cancer has metastasized. Has anyone had similar experiences, with or without it ending up being mets? What tests did you undergo to confirm or disprove? Any and all advice would be very much appreciated, thank you.

bevin

HI there, sorry you're facing this.  I know others will be by soon to provide some input too, but I'd think it is perfectly reasonable for you to request and your doctor to order a bone scan. They're very reliable. Good luck. I hope its nothing.

TDF

Thanks, Bevin, I really appreciate it. Yeah I figure my oncologist is going to be ordering some scans, given everything going on. Just want to know what I'm dealing with already so I can prepare myself if necessary. Isn't having to wait for results just about the worst feeling when you have cancer?

bevin

It totally is a difficult wait. Good luck, I hope everything is okay and you can find some distraction while you wait testing and results.

Emily2008

Hi Chris,

There truly is NOTHING worse than the waiting. I don't have experience with bloodwork changing that way, but I did have weird and persistent pain in the bone around my eye socket. I decided to wait 2 weeks before getting it checked out, just to see if it would go away. In the meantime I say my eye doctor who said everything looked normal. After a couple more days, the pain in the socket went away. Who knows what it was? It's impossible to not think of the worst case scenario, given what we've all been through.

I would ask for a bone scan if you haven't had one recently. Let us know what you find out.

-Emily

TDF

Thanks for commenting and you're absolutely right, Emily - there's nothing worse. Nothing. If we're lucky enough to respond to treatment and enter remission, we then face the neverending struggle of trying not to panic at every little ache and pain. Are we worrying about nothing? Are we not worrying enough? Should we get it checked out? How accurate are the tests, could they be missing something? It's neverending and so tiring at times. I try not to let myself panic too much but, at times like this where there are multiple worrying factors, it's very scary. I haven't had a recent bone scan, so my guess is that my oncologist will order one. Then comes trying not to climb the walls while waiting for the results... 😖

SSInUK

I'm so sorry for your scare. I understand - I had a PET scan Friday and am waiting to get results tomorrow so am in the fear zone too, only cancer patients know that feeling. I can completely understand why your worried - but we are all so prompt to put one & one together and get cancer. I am So rooting for you for it to be nothing - or something else. From your diagnosis there's no reason you should be at high risk. Good luck TDF. Fill your time with distraction and spare your nerves as much as possible till you get answers.

KBeee

Waiting is the worst. Hoping all comes back clear

hodges

Prayers to you, my dear. Waiting is dreadful.