Started from the bottom now I'm here!

seaniebopp

Please help if you can. This journey began with a diagnosis of DCIS and has ended with DCIS, LCIS, ILC, and positive nodes all in 8 months and 4 lumpectomies. I have decided to have a mastectomy but waiting on oncotype test to help decide if I should do chemo. Oh, did I mention that ct scan showed something on liver but too small to say what it is.  I need all the support and advice that I can get. 

ziggypop

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.

imconcerned

Seanie, I'm just curious, how old are you?  Do you feel sick? Do you think things progressed fast or did the docs miss something the first time around?  I wish I had some advice, but I'm still in the waiting phase...The spot on your liver may not be what you are thinking it is.... I'm sending prayers...

pajim

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. . .

seaniebopp

thanks to all who responded.  I am not sure what they plan to do about the liver. My onc pretty much dismissed the finding as nothing serious but I am scared. I pray that it is nothing.

Celtic_Spirit

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.

seaniebopp

Thanks Celtic Spirit for giving me hope.

lekker

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?

seaniebopp

thank you lekker will do

seaniebopp

Update  I have just completed 4 rounds of TC and had an ultrasound of the liver.  Liver spot deemed TSTC by CT scan was NOT found on the ultrasound.  I don't know how to feel.  A part of me wants to do a happy dance but another part of me wonders if it was really a met to the liver.  Should I ask for another CT scan as it was what found the spot in the first place?  Should I ask for a more aggressive chemo as I have 2 more rounds of TC left?  If so what?  I was hoping to be like many of you and have the things still there waving at me during the ultrasound but I guess this is not the case.  I don't know what to do next. 

seaniebopp

bump

RebzAmy

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.

bluepearl

96.6% of TSTC liver lesions are benign in women who have breast cancer. As such, most doctors will call them as such. I had ultrasound and then an emergency CT scan before surgery and they found cysts and TSTC lesions and then went ahead with surgery (my second round with B.C.) Chin up!!!!