Pet Scan for Stage 1? - Page 3

SunDiego · 08-20-2010, 09:59 AM

My wife had a lumpectomy (7mm IDC with 0/13). Doctors locally staged her at 1b. We didn't like the direction the care was going locally, so we went to another med onc who requested full restaging. Brain MRI, bone scan, PET/CT, tumor markers.

Well, Stage 1b became Stage IV overnight when a 3cm mass on the liver lit up and the tumor markers were highly elevated.

Chemo (TCH) recommended would have stayed the same either way, but in this case doing all the full scans for a "stage 1" were critical. Now we know what we are dealing with - otherwise if we stayed locally the liver may never have been found.

As a result we are all for 'over' staging and setting baselines.

Rich66 · 08-20-2010, 10:14 AM

Wow...sorry to hear. But better to know what you're dealing with and have more liver directed options available. So you're saying they didn't do a PET scan before surgery? PET seems pretty standard of care. But your current doc is going beyond that with a brain MRI and bone scan. For whatever reason$, that doesn't seem to be typical before recurrence.
How about circulating tumor cells test, eg cellsearch?
Hopefully getting a liver biopsy to check pathology? It may be different than the primary biopsy. If so, consider a chemosensitivity test. It takes more upfront coordination to do this but it might give better guidance as to what chemo to use.

SunDiego · 08-20-2010, 10:24 AM

No PET scan before surgery - but MRI w/ Mammograms. Ironically the initial MRI showed the liver mass in passing, which led to two additional MRIs with contrast. Despite that they did not request the full restaging until we went to the new Onc.

A liver biopsy was done on Monday of this week, and the results confirmed it to be breast metastasis.

The CTC (circulating tumor test) was done last week, and that came up a 0. Seems odd to be a zero, no??

(No chemosensitivity testing was done)

Rich66 · 08-20-2010, 10:41 AM

Zero is what you want... a perfect "score".
So it's her2+, ER/PR-?
You seem to have a proactive onc. You could still do sensitivity testing. Consider printing out or e-mailing that chemosensitivity info to him. The diatec test is newer but it can be done with a needle biopsy and tests for different dosages of the selected chemos. The rational therapeutics test has longer history but requires larger amount of tissue.
If open to it, you could also get a serum her2 test for added baseline. Ongoing research goes back and forth on the utility. But some here on the board seem to be able to use it as a reliable indicator of activity. It's probably like traditional tumor markers, useful for some.

SunDiego · 08-20-2010, 10:48 AM

Rich, here is the full initial path & background (excluding all the liver stuff which changes it).

http://her2support.org/vbulletin/sho...164#post232164

Thanks for those additional resources

Rich66 · 08-20-2010, 11:07 AM

Is the liver pathology similar? Was Her 2 examined by FISH test?

In any case, there's an ER+ component. Might want to explore HERE before assuming the typical Her2 regimen.

SunDiego · 08-20-2010, 12:44 PM

initial Her2+++ was 7.4 on FISH

Liver path just came in:
Metastatic adenocarcinoma c/w breast primary
ER is positive in 80% of tumor cells.
PR is negative.
Her2/neu is positive (3+, DAKO/ASCO).
Brst2 is negative.
tubular grade of 2, nuclear grade of 2, and mitotic grade of 2 for an mBR
score of 6 and an mBR grade of 2.
Liver segment 4A mass

flynny · 08-20-2010, 04:50 PM

SunDiego, Your wife's dx sounds so similar to mine. I have asked these questions to my onc over and over again about why they don't give me some kind of scans? It just makes me crazy and it is not helping me with getting over this whole thing. In July, my onc's NP says it is a very low percentage of people that go from Stage 1 to Stage IV in a matter of a year or less. Really?? Cause it doesn't seem that way to me! Also who really knows especially if you are a "statistic" and scans aren't really happening at Stage 1a, 1b, 1c whatever it is! Sorry, just really frustrated right now about this!

harrie · 08-29-2010, 12:36 AM

For a baseline PET scan for stage I, would most insurances cover this procedure?

Jackie07 · 08-29-2010, 04:15 AM

I thought mine (a HMO) did in 2003. [Good to see you, Maryanne.] But my signature only shows PET in 2007 when I had the recurrence. So I guess nobody had suggested to me that I should have one for the 1.2 cm cancer with no lymphnode involvement.

harrie · 08-30-2010, 12:13 AM

Thanks Jackie!

WolverineFan · 08-30-2010, 10:32 AM

I appreciate all the responses, and Harrie, yes, my insurance did cover it.

swimangel72 · 08-31-2010, 06:02 PM

My insurance paid for my Pet Scan - but I think my onc wrote up a good explanation because of the small increase in tumor markers and the pain in my chest. My onc made me see a pulmonologist - who said everything sounds normal but he wanted me to get the chest Cat scan with contrast anyway as the radiologist suggested, so I did that last Friday. I return to hear the results this Friday afternoon. For some weird reason, I'm not experiencing my typical "scanxiety" waiting for the results. The pulmonologist also made me make an appointment with my cardiologist (haven't been to see him in over a year). Then out of the blue, my heart started racing one night while I was just laying on the couch watching TV. I emailed my BIL (he's an electrophysiologist and a friend to my cardiologist) and he said I need a 30-day heart monitor to see what's going on (he assured me it could be as simple as too much caffeine that day) - it should arrive on Thursday.

So the plot thickens........and I also have an appointment to see the general surgeon who placed the mesh in my stomach last summer because of a vague feeling of things not being right........I get a weird pulsing/throbbing sensation in the left side of my abdomen from my navel down to my groin; emailed my PCP who said I was at a very low risk for an aneuryism, and it was more likely something to do with the mesh surgery, sigh. So more doctor appointments............I really do feel well otherwise and tomorrow is the first day back to work at school. So today I decided since I can't control everything else in my life, I'll take charge of what I CAN control - namely my hair. Went to the salon and had my hair colored and cut - then had a pedicure - and just like magic, my world looks so much better!

custom · 09-18-2010, 05:22 AM

I'm stage 2b. I get a pet scan in November. Finished hercepten in July. Insurance will pay. Sorry it took so long to reply. I'm not very good with all this computer stuff.