Had the bone scan/Frustrated again

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