stage 4 update dx aug 2011

KG1993 · 12-28-2011, 07:15 PM

Mom went and had her PET scan yesterday at Mayo after her 6th treatment of TCH. Recap Dx with breast cancer with mets to bone and small part of liver.

Results as of 12-11, the liver and lymph nodes are 100% cancer free. YAY. No new tumors. YAY. She still has less than 1 cm of activity in her breast. I asked about the bones and the oncologist told me that bones are hard to measure in PET scan as far as amount of cancer present ( i guess).

I asked whether NED was in her future and doc said NO she will NEVER be NED if she has bone mets. I didn't realize this and was shocked but okay.

We decided TCH was aggressive and had done its thing and probably not going to probably do anything that it hand't already done. So she is going to try HERCEPTIn alone for 3 months and see if it will keep her where she is without the chemo.

I had a post last week pre PET scan and many of you had stage IV liver mets. I guess bone mets are a different game. DOc didn't really say much except liver and lymph nodes were great and breast tumor almost gone as well. Confused on bone mets I guess. Any knowledge?

Thanks as always,
PS I am trying to get my mom to get on here and join the forum.
Kim

KG1993 · 12-29-2011, 11:06 AM

I did some research on my own regarding bone mets and this is what I have found if anyone with bone mets are interested.

Different oncologists will use the term NED for bone mets while others will not.Because bone metastases are typically located in irregularly shaped bones and are difficult to measure with rulers, they have been previously considered unmeasurable disease .

Since bone mets are unmeasuarable, my Mom's oncologist will not declare her NED even if the breast tumor went from 1 cm to 0 cm.

Not sure if anyone else has had this question, but I thought I would share for maybe future members.

KG

KristinSchwick · 12-30-2011, 05:54 AM

Kim,
Thanks for your private message and I am so happy to hear your mom is doing so well! I knew that bone mets are hard to measure, but I guess I didn't realize that they prevent us from reaching NED. I guess it makes sense because the PET scans don't tell whether the "activity" is from a healing met or from an actively growing cancer. My doctor has said that bone mets can become "cold" on PET scan, meaning there is no activity in a previously active lesion. He didn't mention if this would then be considered NED, but by the definition of NED- I would think it would. I believe other members on the boards here have reached NED after bone mets- but please correct me if I'm wrong.
Your mom is lucky to have you- to screen all the stuff on here and present only the positives and not scare her too much. Seeking out information on a scary disease can be just that- scary.
Kristin