Started from the bottom now I'm here!

Hi seaniebopp - Ugh - it's awful when things are worse than they originally appeared to be. I didn't have an oncotype score done as it was clear that I needed chemo. What are the next steps that will be taken, does the something on the liver get tested somehow? It seems they would want to rule that out as being cancer before doing anything else. The only advice I have is to take things one step at a time. As you have already discovered, planning anything in advance doesn't always work since things can change with any new tests. Many hugs.

Seaniebop, if you have positive nodes you might need to do chemo regardless.  Did they take out the nodes and get a clear margin? Your onc gave you the option not to have chemo?  Even so. . .

I had a similar experience to you: initially, they thought I had two tiny lumps and was a Stage I. Axillary dissection turned up positive nodes; now, I was Stage II. Mastectomy pathology report showed several very large tumors; now Stage IIIA. CT scan showed scattered dots on my liver that were "too small to characterize," according to the radiologist. I was scarred to death! My onc said, "Let's take another look at the liver with a CT scan following chemo. If the dots stay the same, most likely they're something other than cancer." So for six months I held my breath! Follow up CT showed the spots had not changed. My doctors aren't sure what the dots are, but they aren't cancer. Try not to worry until you have something definite. If your doctor isn't concerned, most likely you're okay.

I have two liver  spots that are too small to characterize (TSTC) that were found on an abdominal CT after my hyst/ooph.  I started researching and found that it is extremely common to have these incidentalomas and if someone with no history of cancer was found to have a single TSTC lesion, no further testing would be warranted as it's about a 1% chance of being malignant.  Because I did have a personal history of cancer, I had a liver ultrasound 3 months later and there were no changes and no indication of malignancy.  A liver ultrasound is cheap, non-invasive and doesn't expose you to radiation - maybe you can ask for one in a few months for peace of mind?

Hi Seaniebopp

I think if you're worried then absolutely ask for a CT scan and I can understand your concern but as you said it was picked up initially by a CT scan and not an ultrasound scan.  This has actually made me think as I had something similar happen to me whereby something was found on my CT scan on my liver which was really small.  They thought it was a haemangioma (collection of blood vessels).  It was still the same after chemo but that scan was done via ultrasound.  I did have a CT scan 2 years later and nothing was flagged up this time so wondering whether the spot was still there or not!  

I think you really need to speak to your medical team about this and what happens now.