Bone Mets Thread
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After being on this board for only a short while I think Sandilee's advice is best taken. You will have piece of mind when nothing is found. Please insist on the test and it should be covered by insurance (a PET scan would be best or an MRI then a bone scan - bone scan does not pick up everything. I have friends who have paid out of pocket for scans when they were in perfectly good health. My attitude was so foolish, I have so many regrets...). I just have feeling it will be a great PET scan. Let us know how it went.
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ADJ ,
Thank you! I am glad to hear I am not alone, At least I know that is the chemo and not just me. Thanks a bunch Redroan
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For the first time in years my PET Scan showed no new tumors or lesions and I was thrilled. Then today I got my blood markers, since first diagnosed and with all the mets in my spine, ribs, lungs, liver, kidneys along with right hip and femur my markers were always way below normal then this week they shot up to over 148, should I be concerned?
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Wanted to introduce myself on this thread. I was diagnosed in Oct with one single bone met to the left pelvis. I have had stereotactic radiation to that spot and was switched from Arimidex to Faslodex and Zometa. Things are going well. Still having a lot of pain in the hip and I am extremely tired. My oncologist felt like he would pretty much eliminate the pain with the radiation but that hasn't been the case. I was wondering what y'all's experience has been with radiation and pain. Do you have to stay on pain meds from now on?
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Kandy,
I started with widespread bone mets and have irradiated 6 areas gaining quite a lot of pain control, but I still need meds. We are all so individual, keep in contact with your docs regarding anyplace that hurts. They can scan it and rule out mets, or devise a treatment plan if it is. Oh, and all the side effects of the pain meds go away, except constipation. Try not to let yourself go past 2 days.
Anita
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m360
Just wanted to add we should and can be concerned about any and everything, but my mo told me that unless the tumor markers moved by several hundred, she was not concerned.
Anita
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Hmm,mine have moved up quite a bit. I honestly don't think the chemo I'm on is working. I was all the way up to 610 and this last test came back as 986.I talk to my onc tomorrow before chemo...I think it's time for scans and to reassess my treatments...
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I was told I was cancer free after my nd. My dd the nurse insisted on a pet scan . It was done and they found mets to hip and possibly Clovis bone in my brain. After bone biopsy of hip and mri, bone, and ct scan it was determined that I only had mets to hip. After 8 months of, first taxol then Abraxane I was declared in remission Ned. I am now on Femera and once a month Zometa. So far so good. I have pain in my back, shoulders, arms, and knees, but they say that is osteoarthritis. If you want a pet scan demand one. I'm glad I had it done.
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Anita,
Thank you, all my blood marker on all test were around 21 or 22 then both shot up to 148 and 156. I'm not going to be concerned and just watch them I can graph online all my blood test for the past three years and never was above 22 on any tests. But then my RBC and Hematocrit along with Hemoglobin was extremely low this time and read this is normal with Xeloda at times. I think I worry about cancer hitting another site in my body, it's enough already!
Happy New Years to you all and hope we see everyone possibly becoming NED, wouldn't that be the best!
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I hear people on this thread say that a bone scan doesn't show everything but that a PET scan will. I was told by dr that bone scan is the best for bone tumors. Any imput on this?? Isn't a bone scan the best way to look specifically at the bone???
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to clarify, I meant bone tumors only not any other type of mets! Sorry.
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my bone mets were undetected on a bone scan. The PET scan provided the clearest picture.
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I was told the while the bone scan can detect tumors it also detects healing and the 2 are often undistinguisable. A MO in Boston told me he doesn't do them anymore because of this; however, my MO continues to order them at least once a year.
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I've had all test when first diagnosed in 6/09 with bone mets. Later, I do Pet scans every 6 months as they show metabolic activity & new cancer spots.
Terri
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pet scan showed my spinal met 15 months ago. Markers are rising so pet scan jan 6. My doc says if pet is clear she will do bone scan. All blood work good except for TM. Just need to find the cancer. Then go from there.
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I have had many Pet Scans since 2010 ... I find them to be the quite reliable for finding the cancer anywhere. Now that I also have liver mets, my MO relies more on CT scans, but they do not accurately reflect what's going on in my bones, so then, I get the MRI's! It would be real nice to have once scan that does it all.
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Is anybody else taking Xgeva for bone mets? I just started, and I wonder if it's easy to tolerate. I'm just exhausted, and I hope that will go away.
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I do not understand why we even do bone scans. I have been hearing from this site along with clinicians that while they are good for looking at bone diseases, they seem to be worthless when looking for mets. Why not diagnose with MRIs?? [cheaper than Pet Scans at least]. Bone scans only put us into further depression when the radiologist ask for more tests to rule out mets. WHY WHY? Osteoarthritis is imminent with all the drugs we take for cancer; plus age wise it starts showing itself in our 30s, sometimes sooner.
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I've never had a pet scan (insurance refuses to cover one), so I had to start with a bone scan. The bone scan picked up one of my spine mets, in the vertebra that was fractured, but it was a ct scan that showed the other 3.
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I have PET scans done yearly. They scan I believe from my neck to my upper thighs. I thought MRI's are only done on specific areas, not whole body; correct me if I'm wrong.
Terri
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The bone scans picked up my mets, but they're both pretty significant. They still sent me for a CT scan and an MRI for better details. In fact, I'm about to have another MRI to determine in I need to have a vertebroplasty because my L1 vertebrae is seriously eaten up by its tumour.
Have any of you had vertebroplasty for bone mets?
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Hi MsTee,
I have been taking Xgeva for a year and some months now and I've tolerated it very well. Would that AIs were as symptom free.
Good luck to you!
Scorchy
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I think the type of cancer also matters re scans. My lobular did not show up on a bone scan. The tumors were very small and only became visible after a few months on chemo as calsifications on CT scan.
Medicare won't pay for PET scans anyway.
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JimmieBell, Medicare in Texas doesn't pay for PET Scans they do in California. I've been having them every six months.
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Thanks so much, Scorchy! It's hard to know if the fatigue is from the meds, or from the emotionally draining efforts to navigate my new reality as a person with stage IV cancer. lol
Thanks for being here.
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Oh, I hear you, MsTee. For me I think I've think I've hit my limit with Letrozole (Femara), which I have been taking since May. The joint pain was just in my knees and I thought I would just suck it up. But it's just gotten progressively worse and now my hands are affected. And when I can't knit I have to put the brakes on the therapy. Bad enough I have to deal with stage iv breast cancer--DON'T MESS WITH MY KNITTING!
Scorchy
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Hey Scorchy! I agree we can't give up everything we love to do. I always wished I could knit or crochet but I have absolutely NO eye/hand coordination. My grandma tried to teach me to crochet but all I could manage was going in a straight line, never could get the hang of moving on to another row. In high school I took a jewelry making class..the only D I ever got. I tried to make a simple cross and a ring..both turned out awful. I took a painting class and that was a little better but not much. I know what my eye wants to do but my hands got a mind of their own.
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aaoaao (!),
My mom crocheted for years, as did both grandmothers. I had no real interest, though I played around with it for awhile as a teen. And in an astounding move I actually made a simple afghan in 1983 and never touched it again. But a few years ago a good friend of mine inspired me to learn how to knit. I wrote two blog essays about it: The Anchor, Part I and Part II. For me that back and forth, back and forth is so meditative. Challenging myself to learn new stitches takes my mind off cancer--if just for awhile. So when the joint pain in my hands just exploded I realized that I have to talk to my oncologist about this coming week.It's also causing my a lot of fatigue. My quality of life is in negative numbers.
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Sorry I said medicare but meant medicaid.
And Scorchy, I told my onc the same thing. We had to cut back on the taxol when the neuropothy cut into my knitting ability! It keeps me (relatilely) sane.
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Scorchy,
I stopped Femara for the exact same reasons. I could not knit even two rows without hands going into spasms and they would claw up. After I stopped the Femara the hand took at least three months to get back to normal. My oncologist asked if I'd like to try again with Femara and I looked at her and actually said you're kidding me. I had swelling in my feet and knees that I couldn't get my pants over my knees. You have to decide what quality of life you want. But not knitting really hurt, first year in the last 20 that I didn't make my girls a sweater or something knitted. However, I still can't just walk past a yarn shop without buying something. My daughters knit so yarn never goes to waste around here.
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