Bone mets diagnosis question please read

julibug63

Bone mets diagnosis question please read

julibug63

Ladies, I need to know...those of you who have been diagnosed with bone mets, did they discover your mets because you had pain or was it through a routine scan and you had no symptoms of mets.

 My reason for asking is...I had a bone scan come back with some areas lite up but I have no specific pain. I need to make a decision on Wed. at my Dr appt whether I want a follow up CAT or PET. I just hate to put any financial burden on my family if it is not necessary. 

 Please leave me some feedback so I can make an informed decision.

God Bless you all!

Juli

Nanalinda

I was feeling fine when my mets where discovered.  My left arm had become swollen (affected side).  My Dr. ordered an ultrasound of that arm to rule out a blood clot, and instead found multiple mets in my shoulder and clavicle area.  A PET was ordered which showed further mets under my breast bone, and a couple areas in my spine lit up.  They did a bone scan which was negative and I was not having pain in my back so they ignored the spine areas.  After 6 months of tx for the other mets, I developed pain in my back;  my oncologist at that time explained that some mets do not show up on a bone scan, so she ordered a CT scan which verified I did indeed have mets in my spine.  The next PET revealed I now have 3 mets in my spine - so they started me on zometa.  In answer to your question - yes, you can have mets without pain.  They may be too small to cause you pain at this time.  Have the PET to see what it really going on.  Good luck.  Linda

camdenandmo

I did not have any pain.  I still don't.  I just had a routine scan at diagnosis.  I think I would have the PET.  What are your doctor's thoughts?  

RetrieverMomNancy

Juli,

I didn't have any pain. My bone mets (along the spine) were fist discovered by my 6 month post treatment PET scan. My Onc likes PET scans, but I know that others use CAT scans. Please don't put the potential cost before your long term health. If you do have bone mets there are wonderful treatments out there that could give you ten or 20 years!

Good luck to you.

Nancy

julibug63

Thank you Ladies for your info...this cancer journey never really does end does it? I really hate to feel like I am being a hypeochondriac all the time, but on the other hand... I hear all the time about how someone ignored a symptom only later to find out that it really was something. My Onc who I have always really liked and trusted made me feel like an alarmist. I guess the bottom line is, I am not LOOKING for mets but if it is there, I want to know ASAP before they find it in multiple locations.

Anyway thanks for letting me vent and for you input....my prayers go out to each and every one of you wonderful girls.

 In His Love,

Juli

Fidelia

Hi julibug63

Bone mets can lurk without pain for some time - if you have had one form of scan and it shows the possibility of more than one location for bone mets - go with that and get onto Zometa asap - use your PET scan later to track progress - from my sadly long experience of bone mets - if it looks like a met on one scan - and there is more than one location - don't waste time - take the Zometa...as for the onc - yes - easy for them to make YOU feel like the alarmist - very different if THEY were in your shoes - people have moods - ignore and move on and start treating the mets!

AussieSheila

G'day Juli, I had such bad pain that I could barely walk.  My GP told me that I had arthritis after each x-ray for new pain since '03.  I would specifically tell him that I was worried about the pain because my M-i-Law had died 6 mths after dx for spinal mets.  She was dxed with mets from an unknown primary, while I was having chemo for BC.  Finally they said that she had lung cancer.  She and I were both told that we had 'Adenocarcinoma,' which is a generic term for the area it is found in.

Last Nov, new GP investigated further and bone mets were dxed in my skull, shoulders, spine, ribs, pelvis, hips and r knee.  After suffering from what I thought was a natural aging process, I was relieved to finally have a dx of something, not that I wanted it to be mets.

So yes, Juli, sometimes the pain is crippling!  Don't let the Dr fob you off, remember--an ounce of prevention is worth a pound of cure.  You may have to be a little selfish about this, after all what is the quality of your life worth to you? I'm sure in the long run your family wouldn't begrudge you the cost of a scan or two.

Sheila.

Fitztwins

I had pain.

Alpal

I had pain in my shoulder and was not surprised at all that it lit up on the PET. I was shocked, however, that both arms, thighs, pelvis and spine also lit up. That was over a year ago and until latest PET (got results yesterday) all areas showed as healing. Now two spots (spine and pelvic bone) show some increased activity. Still no pain. Follow your intuition. Good luck -

GoldenEyes

I am a 3 time survivor..I always panic when I feel any type of pain..I work in a day care.. on my feet all day long.. I am 53 yrs old.. For the last fewmonths..(June?) I have been having lower back pain.. hip area and upper legs...Some days its so bad I have trouble getting up the stairs at the end of the day. I keep telling myself.. its just me getting older.. or arthritis.. and just from working so much..Other days.. its not as bad.. I can take it.. I can handle it.. But in back of my mind.. I always worry.. Did it come back again? We all think that....I am due for mynext check up in the next month or so.. FOr my blood work..and check up with my Onc.. Not sure when I am due for my PET SCANs.  Keep fighting ladies 

mkl48

Hi,

What differentiated the swelling from lmphadema? Wht was he suspicious? Rutg

beastybabe

Hi

thought that I'd add my two cents worth

I was diagnosed with bone mets in the spine in March 2008, the only reason that anybody found it was that I was having minor back pain....but I had injured my back when I was young and just thought that it was this....the minor pain that I was having wasnt near where they found the mets. And even this year in May or June they found another bone mets site in my lower back, it wasnt sore....I had no idea it was there until I had the MRI.

But I am glad to know...as I am more informed....be as informed as you can.....

GoldenEyes

is it possible to have bone mets.. EVEN if your blood work and tumor markers were normal?

leggo

My experience was similar to Alpal's. I had pain in my sternum that turned out to be mets, but additional sites were found where I originally had no pain at all. Yes, your blood work can be normal; mine always was/is.

bottkota

gracie1, how was your sternum mets found?  i had a bone scan on monday and the results showed something on my sternum.  i have had pain for a long time but has gotten worse in the last few weeks.  What is your treatment plan?  how is bone mets treated?

leggo

Hi bottkota. I had pain in my sternum for at least two years. My family physician was at a loss so he referred me to an orthopedic specialist who diagnosed it as costochondritis (an inflamation of the rib cage). It wasn't until a year later that the pain was so dibilitating, I couldn't even clear my throat so I ended up in the ER. The ER doc ended up doing a CT and that's when the mets were found. Initially I was on taxotere, followed up with Femara.  Most women with bone mets are treated with hormonals with a bone mets diagnosis if they are ER+. I chose chemo first followed by the hormonal. My best wishes to you that it turns out to be nothing.

leggo

Forgot to add that treatment for bone mets will also include a bisphosphonate, to help strengthen bones, such as zometa or pamidronate, which are administered by IV. I have recently switched to an oral bisphosphonate, so that's also a possibility.

Chickadee

I was told yesterday that theCT guided biopsy of a suspicious area of my scapula was bone mets.  I have never felt any pain there at all.

About to begin hormonal therapy with Arimidex but they didn't mention Zometa.  I need to ask about that.

bottkota

so treatment for bone mets is with chemo right?  next question is, is the chemo as harsh for mets treatment as it was for the original diagonsis.  I was ac and taxol and that was so hard on my body, mind and soul.  Don't think I could endure that again.  Still waiting for word from the oncolgist about further testing.  whatever the end result, I am at peace.  not really wanting to go through this again but will do what I have to do to ensure that I am around to raise my 4 children.  thank you for all the advice.  it has been very helpful.  gracie1 when you were having your pain in your strenum did you take tylenol or ibuprofen for the pain?  i have been taking those and it has helped with the pain a lot, which also makes me think it might be something other than cancer. 

leggo

I was taking tylenol 3's. It did help up until that point I ended up in the ER. A lot of damage was done by the cancer on my sternum so it was pretty painful at that time. Not even morphine helped that much. Keep in mind that it could be anything....even an old injury so it doesn't necessarily have to be bone mets. A lot of other things showed up in my ribcage but they were old injuries, not mets. I sincerely hope that is the case for you. If the radiologist suspects mets, you will likely have it biopsied to determine your pathology. My biopsy was CT guided and was not overly painful. Just a bandaid at the site and a few hours in recovery. I should make it clear that almost all of the women on here  (I think) diagnosed with bone mets that are ER+ do not get chemo as their first line of treatment. They try hormonals first, so a lot will depend on your pathology. I just chose a different treatment plan. My wishes that it turns out to be nothing!

Edited to add: Liane, I would definately ask about the zometa. I'm pretty sure it's standard with bone mets.

konakat

Bottoka -- My chemo wasn't as hard for mets as the first time with AC and T.  Zometa or Aredia is given for bone mets -- I've only had very mild aches from that.  I also got weekly taxol -- not nearly as bad as the dose dense -- just a bit achy. Now I'm on Gemzar -- it's a breeze.  It all depends on what chemo is prescribed.  Some are bad, some are OK.  I think even if we get a hard chemo we're better equiped emotionally now -- we know what to expect and know that it isn't forever.

GoldenEyes -- my tumor markers have always been in the normal zone. My blood work was usually normal until recently.  So, yes, it is possible to have normal bloodwork and mets.

Honeybear

I had tremendous back pain for almost a year before I was diagnosed with mets to my spine, ribs, and pelvis.  I had numerous x-rays, CT-scans, and one MRI during that year and all normal bloodwork.  That year started after my 2nd stage 1 diagnosis and bilateral mastectomy.  I thought I was crazy.  I would absolutely follow up with other scans.  The thing about bone mets is that they aren't really easy to "measure" and like a lot of cancers, I think, my doctors have said that you can have it for a long time before it shows up on a scan.  Also, keep in mind that bone scans measure changes in your bones, so things like changes in your bone density can make it "light up."  My docs usually order a few different scans and make decisions based on results from all of them together.

 Best wishes and prayers for you,

Honeybear

Krystyna

I have been just diagnosed with bone and liver metastasis. No pain, no symptoms... Half of  my vertabrae(T7-8) is eaten by cancer, so they are really concerned about my spine collapsing....I had a bone scan done in January 2009 and was clean.

Krystyna

Diagnosis: 12/18/2006, IDC , multifocal 2,5cm, grade 3, nodes3/21, ER+/PR+/HER2-

2ndtimearound

You can have normal blood work and tumor markers can be within the set range and you can have bone mets.  That's why in addition to the blood work drs do PET, MRI, and or Ct's with contrast.  A strong signal on an MRI suggests possiblity of bone mets especially if a possible fracture shows up.  I had excruciating pain in my lumbar area two years ago, went to PT for 9 wks and got better, and then the pain started again.  Went back to the spine dr. who said live with it then went to another spine dr. the following year and he was suspicious of the prev. MRI I had done locally so ordered another MRI.  Then he ordered a bone biopsy - I have mets to spine, peivlic and ribs and had pleural effusion in my lung.  Next week I go for 2 more CT's to deterimine what is going on with lung and what progress I have made being on Femara for 2 mo and monthly Zometa injections.