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CoolBreeze · 01-04-2012, 01:22 PM

My oncologist, and most oncologists, only use those tests as a guideline. They are very inaccurate. If they jump, they might test for something going on. But, lots of people - including myself - never have changes in our CA tests no matter what is going on in our bodies. My liver function was always normal too, even when I had a) 3 large tumors and b) half a liver.

They can be indicators but they are no guarantee.

And, another word of advice. Doctors, radiologists, etc.. ALL make mistakes. And, some of those mistakes will be with you. So, get yourself a big four inch binder and get in the habit of getting copies of all your scans and radiology reports and CA tests and blood tests, etc. They are legally yours and it's easier to get them at the time then go back later.

I was told I had two tumors in the liver, until I found out they missed one and I had three. I had a few scary weeks there - is it growing so fast that I can't have surgery? Do I have seven now? But, it turns out a report was read wrong. I have good care but mistakes happen to everybody, and I mean every body. Most of them are mistakes that don't matter but every once in a while......so get your copies now and read them. You can't really ask informed questions if you don't get copies of your reports.

01-04-2012, 01:22 PM	#2
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: First Herceptin treatment and CA27.29 My oncologist, and most oncologists, only use those tests as a guideline. They are very inaccurate. If they jump, they might test for something going on. But, lots of people - including myself - never have changes in our CA tests no matter what is going on in our bodies. My liver function was always normal too, even when I had a) 3 large tumors and b) half a liver. They can be indicators but they are no guarantee. And, another word of advice. Doctors, radiologists, etc.. ALL make mistakes. And, some of those mistakes will be with you. So, get yourself a big four inch binder and get in the habit of getting copies of all your scans and radiology reports and CA tests and blood tests, etc. They are legally yours and it's easier to get them at the time then go back later. I was told I had two tumors in the liver, until I found out they missed one and I had three. I had a few scary weeks there - is it growing so fast that I can't have surgery? Do I have seven now? But, it turns out a report was read wrong. I have good care but mistakes happen to everybody, and I mean every body. Most of them are mistakes that don't matter but every once in a while......so get your copies now and read them. You can't really ask informed questions if you don't get copies of your reports. __________________ http://butdoctorihatepink.com 08/17/09 Dx'd. Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS HER2+ ER+/PR- Grade 3, Node Negative 10/20/2009: Right mastectomy, reconstruction with TE 12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy 03/31/2010: Finished chemo 05/01/2010: Began tamoxifen, the worst drug ever 11/18/2010: Reconstruction completed 12/02/2010: Finished herceptin 05/21/2011: Liver Mets. Quit Tamoxifen 06/22/2011: Navelbine/Zometa/Herceptin 10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure! 11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years" 03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa 10/10/2012: Progression continues, started Halaven, along with herceptin and zometa. 01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa 03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta. 04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success! 05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo. 06/07/2013: Fiducial placement for SBRT 07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone 07/25/2013: SBRT (gamma knife) begins 08/01/2013: SBRT completed 08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa 06/18/2014: *** NED!!!!*** continuing with Perjeta, Herceptin, Zometa 01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly. 11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted. 5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean. I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.