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03-27-2011, 11:20 AM
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#1
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Member
Join Date: Aug 2010
Posts: 13
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tumor markers
Hi all:
I have just completed treatment for Stage III her2+ breast cancer. Had 3 mos of taxol/herceptin, bilateral mastectomy w/ node dissection, 3 mos of A/C chemo, radiation, and balance of year on herceptin. Finished end of December 2011.
My oncologist does not want to track tumor markers in follow-up visits. He says it leads to too many false positives. This makes me nervous. I understand not wanting to scan all the time, but I'm wondering if most of you Stage III or below-ers have your tumor markers done at follow-up visits.
I understand ASCO recommends against it, but my research shows that the studies those recommendations are based on are very old. Europe does recommend tracking tumor markers. I'm a big girl and am not a fan of the "we don't want to upset you if your numbers go up" position. I was misdiagnosed for 3 years and had to fight for an MRI before I was even diagnosed properly. I like having as much info as possible.
So what do your oncologists do? Do they track tumor markers or not, and if so, what ones?
Many thanks--
Pilgrim37
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03-27-2011, 12:59 PM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: tumor markers
Pilgrim
In my case, tumor markers like the CA27-29 or 15-3 are not reliable....They were always within normal range even when I had progression. Since I have been stage 4 since 2003, I now rely on CTscans and CEA's blood test to check on response. Tumor markers are right on for some, and useless for others...hope this helps...I dont think we ever get over the worries!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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03-27-2011, 01:12 PM
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#3
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: tumor markers
Hi
I attend a major centre in England. We do not do tumour markers as the oncs don't think they are helpful. I have tried to get them to change their mind but no success.
Ellie
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03-27-2011, 08:21 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: tumor markers
My onc has always ran a CA27.29. Alot of onc's don't run them because they aren't reliable and just don't work for everyone. However they work real well for me. If my markers start inching up I know somethings going on. My onc will run the CA27.29 more often when my numbers start climbing. Not long ago I talked my onc into now running a CTC test too. I had to be very pro-active to get my onc to agree to that. Plus the fact that I jumped to be stage IV might of helped.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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03-28-2011, 09:17 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
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Re: tumor markers
I, too, questioned my oncologist about tumor markers and he told me that he did not feel they were reliable. Since I was doing well I decided I'd trust him. That was 6 years ago and I am still doing just fine.
Love & hugs,
Marlys
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