Waiting... Update 27/11 - mets

  • 7 replies
  • 310 subscribers
  • 418 views

I'm still waiting and it's so hard. Bone scan showed two 'hotspots' on my sternum and thoracic spine, both of which could be mets but could also not be, so CT scan ordered. I don't have the results from the biopsy on the second part of my breast, the consultant does but I can't be told until after she has the results of the CT scan and has discussed that at the MDT so maybe in a fortnight I'll know. We're way past all the waiting time standards and nothing has actually been done to treat this yet. It's been almost three months, it's grade 3, and I'm so worried it's growing and seeding and spreading. 

I'm a mess, I can't concentrate, I'm making stupid mistakes like not locking the door behind me, or locking myself out, making wrong turns (have stopped driving apart from locally as I don't trust myself), forgetting things, I accidentally defrosted the freezer last weekend by unplugging it! I know I should be eating well, being active, sleeping, but I have no appetite, back pain makes even walking painful, and sleep?! I'm at least well hydrated I guess, and trying as best I can with the rest. I feel exhausted 24/7. 

The friends who know keep asking for updates and there aren't any! And seem disbelieving when I say there won't be any til December other than "had a CT scan today". Guess they feel as powerless and frustrated as I do. 

  • This sounds like such a difficult time for you. Have you thought about giving the lovely team here at Macmillan a call?  They're always happy to chat things through and might be able to give you some extra ideas for support while you're stuck in this waiting process. The number is 0800 808 0000.  Best wishes 

    Community Champion badge

  • Thanks Irishgirl. I phoned once and they were nice. But all anyone can really say is to try not to worry and focus on other things which I'm finding impossible. Doesn't help that I'm not working just now, temporary contract ended 3 weeks ago, just after cancer diagnosis confirmed. I don't feel I can get a new job when my last update was surgery before Christmas, though I'm expecting it to be pushed back now, and then chemo starting after that. Volunteering 2 days a week, trying to be occupied but it's like part of my mind is constantly taken up with this. Just got to keep waiting.

  • That’s really awful that you’re being kept waiting so long, and well past the expected timeframe for things to be dealt with (I believe?) I hope you get some results and things move on for you more quickly. When will you have the CT scan yet, so you know? X

  • Thank you. I had an appt today with my consultant surgeon. Bad news. I have bone mets in three places. So previous thoughts on treatment thrown out and they're putting me to an oncologist for chemo first to address bone mets, and to palliative treatment team to address the constant pain I'm having. But it explains the long wait from last appt on 30th Oct. They wanted to confirm mets. 

  • Actually.... Do secondary breast cancer folks hang out here?

  • They do. I'm sorry your news wasn't better but go to the Awake thread. Several people who post there have bone mets like you and have been having treatment for several years with good results. Just explain your story and you'll find new friends and support. 

    Take care. Love Karen

    1. I
  • Thanks Karen, heading there now.