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View Poll Results: Would you prefer to be offered the choice to have periodic routine markers?
YES 80 93.02%
NO 3 3.49%
MAYBE 3 3.49%
Voters: 86. You may not vote on this poll

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Old 10-22-2007, 10:19 AM   #1
AlaskaAngel
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Question Routine marker poll

Would you prefer to be offered periodic routine marker testing so that you can decide whether or not to have them done (either presently, or at some point down the road)?
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Old 10-22-2007, 12:33 PM   #2
Mary Jo
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Hello,

I'm not quite sure how to respond. My doctors do not do tumor markers to me. I'm not sure if that's because I'm an early stager or not, but they do not. I know they have explained to me that tumor marker testing is a very unreliable test to determine cancer recurrence. I know from coming to this site that that is true for some and untrue for others.

Now, that being said, I am happy that tests like that are not routine for me. I don't like tests of any kind as I'm always very fearful of "cancer" for almost anything BUT I do think it should be offered to you as an individual so you can make that decision for yourself. We're all different and we all "need" different things to get through this journey.

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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

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Old 10-22-2007, 03:05 PM   #3
cafe1084
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Tumor markers are drawn routinely every 3 months in the office where I go. For me, it seems to an accurate representation of the cancer in my body. It started out at 44 and have progressively dropped since last November to 15 at this time. Athe the conclusion of taxol, they had dropped from 29 to 17. I don't know if they are reliable, but I like the way they've gone so far, so as long as they want to draw them, I will oblige.
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Old 10-22-2007, 04:49 PM   #4
madubois63
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Tumor markers have never been accurate for me...but I still get it done every six weeks.
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 10-22-2007, 06:01 PM   #5
mke
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I don't know how to answer either. On balance I would prefer to have a choice in everything, but doubt that I would go for the tumour markers at their present level of accuracy. Certainly I've never been upset about not being offered them.
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Old 10-22-2007, 09:00 PM   #6
Yorkiegirl
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Every 3 months when I see the Doctor and have my blood work, tumors markers have always been part of that blood work.
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Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
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Old 10-22-2007, 10:38 PM   #7
Alice
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My Onc does markers for stage 4 as a part of the overall picture. She says that they are unreliable accept as a piece of the big picture. I had markers done at the time of diagnosis and they were normal and as I turned out to be stage 3b I do not have much faith in them. I think they can be useful in being an indicator as to when to start looking deeper but if they were normal at stage 3 I would not count on them.
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Old 10-23-2007, 12:09 PM   #8
StephN
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Talking Markers, but with adequate info

Alice - The markers are picking up cell sheds in our blood. At diagnosis, unless we are stage IV at that point, most of us will have a marker in normal range. This is because the cancer is confined to the primany tumor site and perhaps a few nodes. There is probably more in our lymph than in our blood at dx. (Maybe someone can correct or confirm that last statement.)

So an early marker will not necessarily be indicative of what is to come. It is a starting point or base line. If one has a high grade type and takes a chemo that is not effective (me, for example), the only way to know how we are doing is by checking markers and having scans.

Being staged IIIb is not the same as IV. There are various reasons for a person's staging from tumor size to number of involved nodes. But the cancer is still considered "in check." A normal range number would be considered accurate for stage III.
Perhaps with the advent of successful use of Herceptin, the thinking is turning away from using the present tumor markers for early stage AND hormone positive.
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Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
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Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 10-23-2007, 01:59 PM   #9
hutchibk
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Steph. You are a twin soul for me. You and I agree exactly regarding the value, purpose and application of markers. Thanks for your clear and succinct explanations for those who ask...
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-23-2007, 03:11 PM   #10
Alice
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I think even though my onc only does routine tumor markers for stage 4, she would not deny doing them if I asked. I think everyone should have the oportunity if they would like. So I voted yes!
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Old 10-23-2007, 04:35 PM   #11
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Terminology, terminology, terminology

A quick interruption --

The term "markers" can be confusing. Some here who are stage IV and more likely to be getting the tests specifically designed for shed cells (Bayer HER2 serum test) may not realize that "markers" refer to other types of blood tests, such as the CA 15-3, CA 27.29, CEA, and CA-125.

The CA-125 is generally used for trying to detect ovarian cancer, and so those who not only are at risk for recurrence of bc but also ovarian cancer would get the CA-125 regardless of HER2 status or hormonal status. It too is not infallible, but can be helpful in that group. As Becky mentioned in another thread, it in conjunction with annual transvagional ultrasounds has more accuracy.

The CA 15-3 and the CA 27.29 are both used for general bc and some docs use them for all stages and some don't. Some docs may consider them more useful for HR- patients and/or HER2 patients early on. If they are aware that HR+ risk extends out indefinitely, they may consider them useful for HR+ patients farther out in time as well.

The CEA is used mostly for other cancers, and less often used for bc.

The Bayer HER2 serum test is not used for early stage bc.

And ALL of these "markers" are not used in isolation, but are considered along with other lab test results, physical exam results, history, scans, etc. So if you have lots of red flags being raised, even at stage I, hopefully you would be more likely to be getting markers; if everything else is fairly benign, you would be less likely to be getting markers routinely.

AlaskaAngel
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Old 10-25-2007, 10:52 AM   #12
jones7676
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I do not know how to answer - I guess I would prefer to have the markers done just in case. They have not consistently proven to be a reliable guage for my recurrences or increases in activity. But they have proved to be helpful as a confirmation after I have expressed concern about other symptoms I was experiencing.
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 10-27-2007, 09:25 PM   #13
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Yes. I would like that choice. BB
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Old 10-28-2007, 08:31 AM   #14
sarah
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I get routine marker tests every 3 months but honestly they don't help me with my cancer. when they knew I had invasive cancer and where it was my blood tests for CA 13,5 was the lowest it has ever been - 10! so I don't really think it works for me. also at that same time they couldn't "see" the cancer in either a mammo or sonogram despite knowing exactly where it was because of the biopsy!! so tests for me are not reliable or reassuring but I still think it's the best of what we have.
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Old 10-28-2007, 08:45 AM   #15
Brenda_D
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I have CA 27-29 blood draws, along with CBC, and CMP every 3 months or so now. I voted yes, just because I'd like the choice to have or not.
So far, my CA27-29's have never been high, so I'm not sure they work for me, but I'd still like the option to run the test every so often.
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Old 10-28-2007, 04:49 PM   #16
Patrice
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I've been given the choice to have tumor markers run (initially every 3 months and now every 6 months - 2.5 years after diagnosis) - and decided to have them. This was after full discussion with my oncoligist as to the pros and cons and so, I look @ TMs the same as I would a worrisome symptom - if they raise a potential concern, then the doctor can do scans to ascertain whether there is anything going on. I did have one instance near the end of my Heceptin treatment when my nurse mistakenly ran them and they were slightly elevated. My onc treated it the same way she did when I had severe pain in my rib - she did scans to see what was going on.

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Old 11-19-2007, 03:17 AM   #17
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My onc has not ordered the markers on me, but the doctor I work for has. I see him for my blood pressure and various other things. We are using them as a baseline. He also has ordered follow-up MRI's on the pineal cyst which is in my brain and has ordered a PET scan due to a lump in my neck which has not shown up on CT scan. He feels it should be biopsied and my onc does not. Anyway I feel if one misses something the other will not.
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Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 03-29-2008, 11:49 AM   #18
Jackie07
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I've been wondering about my 'tumor marker' since it has been mentioned quite often on the board. AlaskaAngel explained it well on her post and I thought I would bring it up so others (new comers like me?) can see. My oncologist has never mentioned it to me so I thought I would ask for one. So I asked the Nurse practioner to give me a 'tumor marker' test. She arranged a blood test for me. Then I saw the oncologist. He said the blood test was perfect and he checked on my chest muscles around the scar and explained to me the bumps I felt were the joints of my ribs. He also mentioned that since I had had mastectomy, my rib cage had changed position and most of the strange feeling I felt when touching the area is due to the changes in my chest wall.

I was glad to get my questions answered. My oncologist also encouraged me to continue to be vigilent. He's the same one that diagnosed my 'diastasis recti' (pulled my belly muscle when learning Yoga - only went 3 times and had to stop) and quelmed my worries. I am so glad I got on this board to learn so much from everyone. Hope this post might bring some interest to some new comers like me.
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Old 03-29-2008, 02:24 PM   #19
tousled1
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Regular tumor markers have been unreliable for me -- never went over 15.3. What my oncologist and I are doing is relying on the HER2 serum test which seems to be particularly sensitive in my case. A slight rise in the serum level indicates something is going on. I know everyone is different. Tumor markers for some are the first indication that something is amiss. I don't see any reason why doctors don't run marker tests as it is certainly non invasive and can offer a lot of women peace of mind.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 03-29-2008, 04:59 PM   #20
Ruth
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OK...feeling like I should know these things but I don't think I have had markers done? Is that possible? I go in every six months and get CBC and liver functions tests done. Is that markers? They draw two vials of blood. I ask him if it is ok and he says everything is good. Was this done almost 5 years ago too? Or are marker tests more common now?
Thanks! Ruth
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Diagnosed 6/03 nursing daughter
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Modified rad mast 8/03
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Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
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