bone mets? another scan help pls

shiny

Dear All, my 1st question.(pls note, i am tri neg but "transfered" my question to Recurrance and mets desease forum, I will post my bone scan etc results there.sorry for my muddle!)

Hi, Can anyone give me some idea about how

1- they 1st felt their bone mets? 2-what's considered best test to "spot" them spots.

On the face of it, I am not properly worried. I expect I would be in more pain, more consistent pain. I am having a bone scan scheduled soon after about 6 weeks of varying pain and discomfort in my spine and ribs,mostly spine. My appetite seems diminished, I feel a bit off at times.

Pain started quite severely on lying down, but o.k when standing. Then better, (i got a visco elastic mattress, brilliant). It feels often like a pressure on parts of the spine, uncomfortable but not excruciating like at onset, most of the time. Sometimes I get a sering pain, very sharp in one spot then gone. Like I said, from what i've glimpsed, this doesn't sound like what I've heard of bone mets, but just wanted to get feedback. My Oncs team want to do a bone scan. (i had 1 last year which showed some arthritic like stuff in my neck but nothing near spine).

It's been a very demanding time for me  emotionally lately (miscarriage,uncle drowning,dad quadriplegic and blind now going deaf, mum depression,son's special needs appeal etc)  and I think tonight it really is me that would like to reach out for an ear.

 It still feels weird to check these things out with these tests when before Cancer, you would have just got on with it.

BTW! I am not properly down, honest, just running out of fuel a bit, and it would do me good to hear from some of you.

If you have a moment, feedback would be lovely. thank you.

Bless you.

Shiny

shiny

BTW having never posted a question just answered others, I don't think I got this right?

I should have added this to a sub category in Recurrance? Sorry, should read the how to page!

 have moved post to recurrance and mets forum under "bone mets? scan? help pls"

dhettish

Hi All,

I have not been on this site for some time. I saw my onc on 3/3/09 and everything looked great. I told her that I truly thought the cancer was gone, gone, gone.

Then 3/4/09, I was exercising and began to experience hip pain. It is pretty bad. I cannot sit, stand, walk, or lay down without discomfort. I went to my reg doc who took an x-ray and said it was my L3 which is "blown". I kept telling him the pain is not in my spine but in my left hip. I have had degenerative disc disease for about 9 years and with exercise and massage, my back does not bother me. He prescribed tramadol and soma and then I have escalated to Soma and Percoet and still cannot get complete relief. I have been going to PT and they said I have a tilted sacroilliac joint and have been doing e-stim and u/s and manipulation. I also have some exercises to do at home. I could not do all of them because of the pain. The pain really gets bad at about 3AM but could be because I have been w/o meds for aobut 8 hours. It has now been 10 days and the pain is getting no better. I don't think it is getting worse but I have been unable to work because of it. If I take the meds, I am in no condition to work or drive. I have a massage scheduled for Monday 3/16/09. If I don't have any relief by Tuesday, it will be 2 weeks and I think a call to my onc would be appropriate. I am worried about bone mets. On a scale of 1-10 my pain is about a 7-8 and then goes down to a 3-4 with meds. 

Am I being paranoid? My reg doc wanted to run a CT but BX said based on my BC history they said I have to have a bone scan first. That turned up my fear a notch. Would an x-ray show mets or is that only seen by a bone scan? 

I took a soma and a percocet about 20 min ago and am just waiting for it to kick in. I hurt bad. I cannot find a comfortable position. Just not sure what to do and beginning to get scared. 

Debbie

Kim_888

My story is long and complicated, so Ill spare all the gory details.  You can search by my user name from some of my other posts.

 I was originally diagnosed in 2001, opted for mastectomy only at that time.  No other evidence of disease was detected. Further, I was not a candidate for radiation therapy.  I had a choice if I wanted chemo and opted against --again too many details to get into.

 My recurrence was diagnosed in the fall of 2008 after enduring a spring and summer of pain and suffering.  Tests, tests and more tests showed nothing.  That previous May I had been doing some gardening using pruning shears.  Kind of overdid myself and felt muscular and skeletal pain in my chest and back for a few days.  The back shoulder pain did not diminish as it should have, but it was very strange.  Sometimes my back would hurt, sometimes my chest when I'd breathe...it seemed to be moving.  I later found out this is called something like referred pain.  In any case, the pain settled in the middle of my chest (sternum) and became EXCRUCIATING.   I've always considered myself to have a high pain tolerance, but this was BAD.  I am very sensitive to pain meds and we tried everything under the sun.  Finally, the only thing that helped was Oxyctonin 10 MG Extended Release. I take one in the AM and one in the PM; along with 600 megs ibuprofen. 

Anyway, getting back to the diagnosis.   With my mastectomy, I had reconstruction surgery with an implant.  Great results.  Thought maybe this ruptured or something.  After visits to the family doc (who put me on muscle relaxants----said I had most likely had a muscle pull), I went to the plastic surgeon, he sent me for blood work, CTs, and chest Xray.  All appeared normal, with the exception of an elevated SED-rate in my blood test---this is indicative of bone inflammation.   From there I went to the breast cancer surgeon.  He ordered an MRI.  Again, everything was read as normal and he referred me back to the Oncologist.  He too ordered a new set of CTs and bone scans.  The CT was read as normal -AT FIRST.  On the bone scan, the lower middle part of my sternum lit up.  Upon a re-reading of the CT, a subtle lesion was noted.  This was biopsed in August 2008.  Results came back INFLAMMATORY only--No cancer.  I was not relieved. Still the pain persisted and was worsening.   My onco wasn't satisifed either and sent me to Fox Chase Cancer Clinic for a second pathological opinion.  They determined tumor cells were present, but could not confirm nature of the cancer....recurrence versus a new cancer.  Now I needed a third opinion to be a tie-breaker of sorts. Sloan-Kettering  Breast Cancer center in NYC, confirmed it was cancer, and were confident that it was a recurrence of my original breast malginancy.

Moral of this whole story.....don't settle for answers if your gut feeling is telling you something else is wrong.  The doctors aren't gods and pathologists make mistakes.  When the term 'managed health care' was coined, they were right.  YOU better manage it.   I would get second and in some case third opinions if necessary.  This is your LIFE.

I've now been on chemo for 1 year and three months.  My cancer is a triple negative and is progressing.  I'm now exploring the cyberknife in conjunction with chemo.

I read your history above and my mom has degenerative joint disorder and had to have a full hip replacement at age 54.  She is now 66 and has 5 bulging discs in her back.   She is in terrible pain too.  She just met with a back specialist and they feel her bones are growing in around her nerve endings.  She may be a candidate for back surgery, where they shave this bone.  I hope for your sake, maybe you are just getting a touch of arthritis or have a sprain.    My thoughts and prayers will be with you.    

Hang in there everyone and be well.  You are not alone.

Kim

shiny

Thank you for sharing your experience and your wishes. I am sure your story will help inform lots of woman.

My very best wishes for the best Mets management for you.

Dhettish, As you know, I am just as much in the dark as you are and I think that is the norm when a new symptom develops whether subtlety or dramatically. No one can say what "it" represents, we just have to get things checked out. And like Kim said, i it really doesn't feel right to you, keep seeking answers until you are satisfied. Hopefully obviously it will turn out to be something else then you fear.

Best wishes and thoughts coming over.

Take care,

Shiny