How was your mets discovered?

Mccjm22 · September 2015

Hi everyone! I'm new here. I just posted this on another board too since it's two part. Brief history:

Diagnosed 1/8/15 with stage 2 ILC
Double mastectomy 2/25/15
Pathology came back worse than anticipated - 9cm tumor, sentinel node involvement, traces of cancer cells on axillary nodes but not enough to call any "positive"
Diagnosis changed to Stage 3
8 rounds of chemo (4 AC, 4 Taxol) finished July 13, 2015.
25 rads - finished 9/4/15
Starting hormonal therapy end of this month (er/pr+)

I didn't have any scans prior to any diagnosis treatment (tumor found via ultrasound/biopsy).

So as I start this next phase, I feel so nervous and anxious and worried. I have no scan scheduled. My tumor was removed in its entirety, and I show no signs of metastasis, so oncologist has no reason to scan. I am not looking for anyone to tell me I need to ask for a scan, I am looking for individuals to tell me that they didn't have a scan either. I am a very good advocate for myself, and will push for one if I feel as though it is necessary.

The worried part comes with being concerned for future mets. I know this is a common concern for anyone facing breast cancer, and in particular those with a higher stage, but I wondered how those who had mets found out if not for a scan (what type of pains, how long, etc.).

Thanks to any and all for their response. What a wonderful community this is.

kt1966 · September 2015

Hi Mccjm,

If I were you I would insist on a scan (CT or PET) as a baseline if nothing else.

It would give you peace of mind and also if you have 'symptoms' of something at a later date, they will have scans to compare with when you get scanned again.

I know when I was first diagnosed stage III in 2003 I had a bone scan and ultrasounds, but CT or PET would be good. As for being re diagnosed at stage IV, a bone scan picked up a 'bone island' 4 years ago, but it wasn't until my PET scan last year that it actually turned out to be bone metastasis (along with other bones & lungs).

Hope that helps. I know a lot of oncs don't do scans unless you have symptoms but I think a baseline is a good idea (perhaps it was my lymph node involvement that got me some scans...)

moni731 · September 2015

Hi Mccjm22,

I would agree and and advocate for a scan, I received a PET at initial dx d/t some vague feelings of fatigue. It was negative. Fast forward to today, I have had some RUQ pain and went to my PCP. Liver enzymes were also elevated. PCP ordered a CT which showed extensive mets to both R and L lobes. The radiologist was able to pull a prior CT from last year and compare to make a very quick diagnosis. I had also found a new lump in the other breast that was being worked up. Stunned to say the least, as the discomfort I was having was pretty mild and would have easily dismissed it to a stomach bug. I am to do another PET next week and start chemo next week.

How was your mets discovered?

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