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Old 10-13-2009, 05:27 PM   #5
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: PET scan....scared...

AARRRGH!

Sounds like you are in need of a 3rd opinion! Or at the very least, that conference call between the oncologists - and I would suggest including the radiologist as well.

You have a scan which seems, based on what you say, to be inconclusive. So you do need more information. That could either be waiting and watching OR biopsy. But you need to have more than "I'm sure it's this" (with opposite conclusions) to go on.

Here's a few more questions to add to the mix:

1. What did the radiologist report say? Are the 2 oncs basing their opinion on looking at the scan themselves, or the radiology report, or ?
2. Did the PET show this new "spot" to be metabolically active (what was the SUV?).
3. Why would you cancel the Herceptin infusion? Even if this is progression, any new treatment protocol would probably include Herceptin anyway. I would want the herceptin so I wouldn't be completely "naked" while sorting out what the scan really means.

Tough decision. You need to know what the true answer is - but it seems you do have time. Assuming the rib pain was due to the fracture, you really do not have symptoms from whatever the lung thingy is. Ask what is entailed, and what are the risks in a biopsy. Weigh that against having a follow up scan in another month - including how the uncertainty will affect you. See if you can get consensus among your team, then go with you feel is right.

Take care
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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