Bone Mets Thread

Chrissy, I see you were diagnosed in 2003? So you r ten years with mets? That is great to see!

I hope you ladies don't mind me posting a question here.  I was wondering if any of you could tell me the symptons of mets to spine!  I am being treated for lymphedema, truncal, I think!  Anyway, since finishing rads, I've had this intermittent pain in my back, it comes and goes, but mostly comes when I "use" it!  It's hard to explain when and how the pain comes and goes, but it has me scared.  I talked to my MO and he doesn't seem concerned, that is when he decided I needed therapy for the lymphedema, I've had 3 sessions and so far, the area in my back has not improved, not worse, but def not improved! 

Thanks for any responses!

Hi Nettie,

I don't know if this helps.  I have mets all over my body - spine, skull, ribs, pelvis, thighs etc etc.  The only pain I had was in my ribs - and then after I started treatment I had a lot of trouble walking with pain in my groin and weakness (after a bunch of MRIs of spine to look for trouble - I eventually had PT for that and it turned out there was also a crack in my pubic bone that appeared after the groin pain started that we don't know how it got there as I had not fallen).  Anyway, I did not have any pain in my spine from the mets there.  They found them by MRI initially, confirmed by PET/CT and then followed by CA27.29.

Nettie- I don't know the details of 20130502's diagnosis, but in my case it probably was in the blood but not visible on scans when I was first diagnosed as Stage I.   I had no node, involvement so it spread through the bloodstream to my bones.  

  It seems likely when one finds mets so soon after the first diagnosis that it was already there but undetected.

Ok, so I'm not very knowledgable, but how did they miss it in the blood work?  That is very scary to think that it can be missed in the blood work! 

I got a call from my nurse yesterday morning that the bone scan only shows one bone met now, yeah! (There was a smaller one on the PET scan but it may not show up on the bone scan or possibly, the femara took care of it.)  In any case, she stated that they are leaving me on the current treatment since it is working. So good news!  (I did think that would be the case but it is great to have it confirmed).

Happy New Year (as happy as possible) and best wishes to all of us in 2014 and God bless!

PS - The 2 comments I hear the most since dx are "Hang in there" and "You'll be ok".  I guess it's better then having them say, "You are so stupid for believing your primary physician" (but that's the one I keep repeating in my head).

great news musiclover! Happy new year indeed!

In regards to spine pain, I thought it was my arthritis and EDS.  During the time of my mastectomy I was having groin pain and doctors just brushed it off.  I continued to have groin pain and not able to step up on a curb or steps without a lot of trouble and major pain.   Then I started to have pain in my ribs where I had my mastectomy my PCP said it's arthritis, and I knew it wasn't such, so I walked over to my OP and said I need to talk to her or her nurse immediately. I said I don't think my PCP is taking the thought of recurrence a serious situation.  They asked me if I could do a PET Scan that day and it was done and I had cancer in my ribs, spine, right hip, femur and lungs, (since then more in spine, liver and kidneys), the pain in my groin area was the typical pain that comes with hip and femur mets.  So if you are having pain, go with your gut, push for a MRI or PET Scan.  I think most of us ladies know when things are changing.  I'm feeling so good because I haven't had any cancer gone from such areas but I've kept stable with the cancer that is throughout my body.  I believe I have years of life ahead and know that I'm the one that is driving where and what treatments I have and because of such I've kept myself in a stable situation.  I will never be NED but keeping things from getting worse is the best news one can have in my situation.   Again I think we know if things are not right, then push all you can to make sure that the right tests are done and that your feelings are then acknowledged or shown that nothing new exists.  Just to let those know I have never had an increase in my blood test for my cancer, my markers have always be in the low normal while cancer was growing throughout my body.  Even now my cancer doesn't change my blood markers. My Oncologist says I'm one of those people in which cancer markers never show up in blood, which is many of us that she treats per our conversations.

Oh, what a happy New Year, Musiclover!!

Chrissy, you are an Inspiration. I hope the new med(s) work on the old and new buggers.

Musiclover, that's great news, I'm really happy for you!

Chrissy, I'm sorry to hear you've had progression, but I wanted to say that I love your attitude! I'm in the same boat as you at the moment; I'll be changing treatments after the holidays so I'll keep you company in limbo until things get sorted out. It's exactly as you say. It is what it is, nothing will change that. All we can do is live our lives to the fullest of our ability, grateful for all the good things that still happen. 

I hope your new treatment gives you minimal se's, and that you get back to NED in double quick time. 

Nicky 

MusicLover---great news. Happy New Year!

Nettie- blood work does not necessarily catch mets.  My spine and ribs were riddled with mets and my labs- CBC and chemistry-were normal.  

 So  if it doesn't show in bloodwork,  how do they find it?  Sorry to be so ignorant.   Is  it found during follow-up  tests?

So what prompts the Dr  to order those test? My Dr said no scans needed  now.

Redroan, Yes! All I want to do is sleep.  My sister and her husband plan to come visit from out of state.  I believe that if my wbc's are too low I won't get treatment on Tues. as planned and then maybe I could visit.

Nettie,

  The standard of care seems to be to wait until there are symptoms, such as persistent pain.

I think women need to insist on a scan at the two year mark, and every two years after.  With all the treatments available for mets now, finding it early can prolong life.  The official stats say finding them earlier doesn't  add to life expectancy, but that research is old.  I can assure you that had my mets been discovered before they destroyed part of my spine, I would be a lot better off.

   My advice is be pro-active.  Insist on a PET or MRI or at least a bone scan after two years. Mets don't cause pain until they start to do damage.  Better to know sooner and start treatment.

    Also, X-rays don't necessarily show mets--- it takes a bone scan at least.   I had complete X-rays when my vertebra was crushed by mets and it looked normal.  My MRI showed the cancer in my spine pressing on the spinal cord when X-rays and blood work were normal.  

    These tests are expensive so they aren't ordered without cause.  My advice?  Insist.  Many of us with stage I and no nodal involvement are here now, with mets, a few years after our initial diagnosis.  Cancer can travel through the blood and there are no tests to assure us that it's gone after initial treatment.