Had the bone scan/Frustrated again

camul
camul Member Posts: 2,537
edited March 2012 in Breast Cancer #1
Had the bone scan yesterday. Much better experience. Went to a different hospital and they treated me so nice. The nurse who accessed my port was the one who assisted when it was put at that hospital. He remembered me and when I introduced my son, he said don't you have 2 sons? The tech were great too! One turned the screen so I watch as it was scanning and saw it light up in the areas that hurt. Which is what I expected, although I was really hoping that the pet was right, but knew it wasn't!

The results are: areas of increased activity, mainly the ribs, areas of the spine, clavicles and arms, right femur. Areas of less activity: the thoracic spine where and left femur. and some of the head tumors. And the rest are pretty stable no changes, but still there in my tailbone, lower spine.

This is a lot different from the pet which showed only a tumor in the spine and right femur. So don't know if we will do anymore checking now on the liver tumors or connective tissue of 12 weeks ago. The liver function is still good and we were not going to address that until we needed to, anyways. I don't want to do any more pet scans, the last 3 have not been accurate, so why do them when the MRI, bone and ct scans seem to work better!

Now I just wait until Wednesday to get the onco's feedback and decide if I stay on this chemo or if we are changing again. Frustrating but worth it to be here!

Thanks everyone for being so supportive, love you all.
Carol


Pet scan yesterday showed very little. First the tech was not happy because radiologist does not like ports because they can show false negative, but agreed as my onco nurse had accessed it with a line for scans.

Results show that I only have an active lesion on my spine and right femur, and the only new thing was that I have something on my right vocal chord??? but not what it is. Didn't show anything on the liver, abdomen, tailbone, lower spine, ribs, neck or left hip/femur.

At the bottom of the report, it states a follow up with a bone scan would be recommended as the contrast didn't work well due to using the port and herceptin. States in the report that I would not allow an iv. I was told over a year ago by my RO, and 2 pet scans ago, that it is not uncommon for a pet scan to show false negatives on bones, then why not just do a ct scan, bone scan and mri to begin with.

I called my med onco this morning and he scheduled a bone scan for tomorrow morning. But the pet scan cost me about $600. He likes the pet scan as they show the organs, but the Dr. who read the scan said the contrast didn't work because of recent chemo, so did it even show the organs. Onco nurse said Herceptin does not interfere with a pet scan.

It is so frustrating because I have pain through my ribs, back, spine, whole tailbone region, shoulders and left femur, and 7 weeks ago I had the MRI which showed the lesions on my head (that was too numerous to count) neck and clavicle, and 12 weeks ago had a ct scan on my chest that showed the cancer through my connective tissue and it said all the ribs and spine were involved. Unfortunately the pain has increased throughout my chest, spine and tailbone, and my left femur feels like I have a toothache with throbbing most of the time.

I would be happy that the pet scan was this good, but it is hard to be happy when my body tells me different. If the bone scans show this to be true than I will be thrilled, but it is so hard to believe that in 12 weeks everything but the pain has disappeared. It didn't even show the tumors that showed on my liver 12 weeks ago!

So now I will do the bone scan in the morning and hope and pray that it doesn't show anything. If that is the case, I can live with the pain!

Sorry, pretty frustrated and had to vent.

Carol
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Comments

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    I am so sorry you are caught
    I am so sorry you are caught in the middle of all this medical nonsense. We know our bodies and it is so frustrating some times when the doctor's don't listen to us. I am also sorry that it cost you all that money and now they want new scans! I hope that your scan tomorrow comes out with good news. I don't know if you see a pain clinic or tried, but maybe you could? I go to one and they are fantastic at helping with my pain, yet honest about the routes of tx and dead ends.
    I admire you so much Carol.
  • epark
    epark Member Posts: 339
    Oh Carol I hope you're wrong
    Oh Carol I hope you're wrong and the PET Scan is right ....that would be a wonderful...keep us posted...I'm always thinking of you...

    Tons of Hugs
    Eva
  • camul
    camul Member Posts: 2,537

    I am so sorry you are caught
    I am so sorry you are caught in the middle of all this medical nonsense. We know our bodies and it is so frustrating some times when the doctor's don't listen to us. I am also sorry that it cost you all that money and now they want new scans! I hope that your scan tomorrow comes out with good news. I don't know if you see a pain clinic or tried, but maybe you could? I go to one and they are fantastic at helping with my pain, yet honest about the routes of tx and dead ends.
    I admire you so much Carol.

    Thanks
    It just gets frustrating, I was already kind of ticked at the tech. I would let them do an iv, but the last 2 times with the pet, they finally accessed the port when they got the iv in and the veins collapsed when they were putting in saline. So the report just topped it!
  • camul
    camul Member Posts: 2,537
    epark said:

    Oh Carol I hope you're wrong
    Oh Carol I hope you're wrong and the PET Scan is right ....that would be a wonderful...keep us posted...I'm always thinking of you...

    Tons of Hugs
    Eva

    thanks,
    and Eva, have a great trip, it should be soon now! Hope for good weather and I love the food in SF. And I too am hoping that the bone scan shows the same, but my body just doesn't agree! This is when I would love to be wrong.

    Carol
  • missrenee
    missrenee Member Posts: 2,136 Member
    camul said:

    thanks,
    and Eva, have a great trip, it should be soon now! Hope for good weather and I love the food in SF. And I too am hoping that the bone scan shows the same, but my body just doesn't agree! This is when I would love to be wrong.

    Carol

    Carol--You're one of my role models here
    All those scans can drive you nuts. The only bone met that showed on my recent PET, CT scan and bone scan was T-12. However, the MRI of my spine and part of my pelvis showed multiple scattered lesions throughout. What I was told that the MRI was more sensitive to the smaller bone mets than the PET, but that they were definitely there. The funny thing with me is I have more pain in my pelvis than in T-12, and T-12 is fully involved. Go figure!

    I sure hope that bone scan agrees with your PET. Maybe we're just getting arthritis! Even with all the great technology, though, nothing is perfect. I'll be with you in that scanning room, Carol, hugging you with all my might (but gently) sending positive energy through you for great results. I hear the frustration in your voice and I totally understand.

    Warm gentle bear hugs, Renee
  • MAJW
    MAJW Member Posts: 2,510 Member
    missrenee said:

    Carol--You're one of my role models here
    All those scans can drive you nuts. The only bone met that showed on my recent PET, CT scan and bone scan was T-12. However, the MRI of my spine and part of my pelvis showed multiple scattered lesions throughout. What I was told that the MRI was more sensitive to the smaller bone mets than the PET, but that they were definitely there. The funny thing with me is I have more pain in my pelvis than in T-12, and T-12 is fully involved. Go figure!

    I sure hope that bone scan agrees with your PET. Maybe we're just getting arthritis! Even with all the great technology, though, nothing is perfect. I'll be with you in that scanning room, Carol, hugging you with all my might (but gently) sending positive energy through you for great results. I hear the frustration in your voice and I totally understand.

    Warm gentle bear hugs, Renee

    Carol...
    We'll ride the bus together this morning.....! I have my 5th brain rads this morning then on to have my port inserted....not looking forward to this.....but we do what we have to do....I am so sorry you are in limbo with all these conflicting tests and knowing how you feel....We all understand the frustration......

    Know I have you in my heart and prayers, my dear friend....
    Hugs, Nancy
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    MAJW said:

    Carol...
    We'll ride the bus together this morning.....! I have my 5th brain rads this morning then on to have my port inserted....not looking forward to this.....but we do what we have to do....I am so sorry you are in limbo with all these conflicting tests and knowing how you feel....We all understand the frustration......

    Know I have you in my heart and prayers, my dear friend....
    Hugs, Nancy

    Dear Carol, All these tests
    Dear Carol,
    All these tests are frustrating but I try to remind myself that they are one more thing that has to be in our new "normal". Believe me, I don't usually handle it very well either. I hope for great results with the bone scan. My oncol. seems to rely on that one test the most for bone mets. Not sure if that's a good thing or not. After my MRI showed several buldging discs and other lesions that he said were benign, he said I have arthritis in my back.
    I hope this will be what is going on for you.
    Take care my friend and we are all praying for you and sending lots of love and patience.
    HUGS,
    Wanda
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    Oh Carol,
    Sending positive thoughts & prayers your way. Don't apologize about venting. You know that's why were are here.

    xoxo,
    Jean
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Carol, I can understand your
    Carol, I can understand your frustration and I hope it helps to get it off your chest. We are here for YOU. I am thinking about you right now and sending positive vibes and strength to get through the next set of scans. I am hoping that your results are in agreement with the PET. Please let us know. Take care sweet sister!!

    Debbie
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
    Hoping for the best on your

    Hoping for the best on your bone scan,its always frustrating when different Dr. tell you different things when we know somethings going on with our body's.Keep us posted.

    Hugs Frankie
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Oh Nancy,
    I would take away

    Oh Nancy,

    I would take away all the frustration for you, and the pain too. I hope you're feeling better today.

    Hugs,

    Linda
  • jnl
    jnl Member Posts: 3,869 Member
    epark said:

    Oh Carol I hope you're wrong
    Oh Carol I hope you're wrong and the PET Scan is right ....that would be a wonderful...keep us posted...I'm always thinking of you...

    Tons of Hugs
    Eva

    It will be great if your PET
    It will be great if your PET scan is right Carol. Praying for you!

    Love, Leeza
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    Got you covered
    on the prayer list.
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    Got you covered
    on the prayer list.
  • Kylez
    Kylez Member Posts: 3,761 Member
    MyTurnNow said:

    Carol, I can understand your
    Carol, I can understand your frustration and I hope it helps to get it off your chest. We are here for YOU. I am thinking about you right now and sending positive vibes and strength to get through the next set of scans. I am hoping that your results are in agreement with the PET. Please let us know. Take care sweet sister!!

    Debbie

    I'm sending prayers and
    I'm sending prayers and positive thoughts your way Carol.


    Hugs, Kylez
  • carkris
    carkris Member Posts: 4,553 Member

    Got you covered
    on the prayer list.

    That is very frustrating. I
    That is very frustrating. I hate it when thishappens. hoping your new scans are right and the herceptin is the thing for you. prayers for a perfect bone scan
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    carkris said:

    That is very frustrating. I
    That is very frustrating. I hate it when thishappens. hoping your new scans are right and the herceptin is the thing for you. prayers for a perfect bone scan

    Frustrating indeed
    Carole-
    Sending only positive vibes and good thoughts your way as you get to the bottom of this latest dilemma. Wishing you good results and new hope.

    Suzanne
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member

    Got you covered
    on the prayer list.

    Praying and hoping that you
    Praying and hoping that you will get good news Carol.


    Praying,


    Jan
  • Pam5
    Pam5 Member Posts: 232

    Frustrating indeed
    Carole-
    Sending only positive vibes and good thoughts your way as you get to the bottom of this latest dilemma. Wishing you good results and new hope.

    Suzanne

    Thinking about you
    Thinking about you and hoping this turns out better than the scans are saying. All things are possible, Carol.

    Hugs,
    Pam
  • DianeBC
    DianeBC Member Posts: 3,881 Member

    Frustrating indeed
    Carole-
    Sending only positive vibes and good thoughts your way as you get to the bottom of this latest dilemma. Wishing you good results and new hope.

    Suzanne

    Sending prayers
    This would frustrate anyone Carol. Positive thoughts and prayers!