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lady4law View Drop Down
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    Posted: Feb 22 2011 at 1:05am
My cancer marker has been elevated for a few months. My Oncologist failed to tell me after the first draw, but did tell me it was 35+ after the second. (I only discovered this was the second draw that was elevated because my PCP's nurse thought I knew) I had another test last week and he had his nurse inform me it was still elevate. She speaks English badly (Russian) and I was not able to really discuss anything with her.

My concern is, I have been experiencing severe pain in my spine, head, and having vision problems.
When I mentioned this to my Onc, he said "not my field" - What the heck, not his field? 
When I asked about the elevated cancer marker, he said, "who knows".

He did claim, my PET and CT scans showed no cancer. After 7 PETS and 12 CTs, I knew these had not been performed correctly, drugs not given for contrast, time, etc. My PET stated, "activity", and the CT - Spina Bifida, no kidding! Maybe you can see my concern about, these scans not being performed correctly. Over the last 3 years (since my DX), I have 2 bone scans,  a number of chest x-rays, about 20 x-rays of my spine, beside the PETS and CTS, and not one radiologist saw spina bifida. When I asked about the SB, he had not a clue, in fact looked so shocked I don't think he looked at the reports

I am very concerned that the cancer might have returned.

IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 1:12am
Which tumor marker test are you getting?  Is it CA 27.29 or another test?  Has it been elevated in the past, but went back down?  Mainy has a thread talking about how stress may impact the results of these tests.  I'm sorry your scans were messed up and didn't give you accurate results.  I know your options are limited, but it's a shame that they weren't done right the first time.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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lady4law View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lady4law Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 1:21am
CA 15-3
It was "only" 20 when I was first Dx with Stage3, Grade 9 TNBC BRCA2
Now it's 35.2 or 3, and was NOT elevated until a coupel months ago, about the time the pain became unbearable. I just found this online:/www.cancer.org/Treatment/UnderstandingYourDiagnosis/ExamsandTestDescriptions/TumorMarkers/tumor-markers-specific-markers

CA 15-3

CA 15-3 is mainly used to watch patients with breast cancer. Elevated blood levels are found in less than 10% of patients with early disease and in about 70% of patients with advanced disease. Levels usually drop if treatment is working, but they may go up in the first few weeks after treatment is started. This rise is caused when dying cancer cells spill their contents into the bloodstream.



IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 7:29am
Lady4law,

I know this may not be possible, but can you get a second opinion?  New onc?  It sounds like your onc is dismissing your symptoms.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 1:07pm
Lady4law, from now on I would suggest you request copies of all of your blood work, that way you can personally keep track of your numbers.
 
 
Since you have symptoms that concern you I would vote with Donna and suggest
a second opinion.  Your peace of mind is so important, best wishes and please let us know.
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lady4law View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lady4law Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 3:45pm
Pam, I have been getting copies of all my scans, blood work, etc, since the very first biopsy. However, not accusing anyone, but I did bring a friend with me to my next to last Onc appt. (She requested the blood work results, as I was very upset). When we left, we reviewed the results, there was NO CA15-3 results! The next day he called and told me (the previous days' test) returned with very elevated cancer markers.

He never mentioned they had doubled since the previous visit (again NONE stated on my copy of blood work)  However, my PCP's nurse gave me the exact number of those results, and was upset that they had doubled, my PCP order another blood test for me. 
IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 4:11pm

Lady4law,

Wow, I agree with Donna!  You need another oncologist now!  You should not put up with his dismissive attitude!  Please seek another onc!

Lee in Denver

dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 4:16pm
This may not help to know, but a reading around 35 is not very high at all.    All kinds of things can lead to slight elevations like the one you have experienced.  Any kind of inflammation, for instance.   Which is not to say you shouldn't investigate your pain - you absolutely should.  But the marker on its own wouldn't worry me so much.      If it starts hitting 50 or higher, then I'd take it more seriously.

Good luck, and please keep us posted.
love,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 4:26pm
Is it possible they failed to give you that particular result?
 
Please let us know what you find out, all my best that things are fine..
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lady4law View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lady4law Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 9:50pm
I was dx (originally) with 3rd stage cancer, grade 9 (highest grade) and yet my cancer marker was "only" 20. Now with all this unbelievable pain, and no response from my onc ("not his field") I took my scans, bone, CT and PETs, plus cancer marker to an orthopedic specialist. He looked at everything, all my charts, and spent an hour with me (verses 3 min at onc) and concluded it "looked" like the only answr could be the cancer returned, as he foudn no bone or nerve issues.
He recommended I seek a second opinon from another onc, which I am in the procss of. I contacted my son's Onc office this afternoon, and they are going to try and get my insurnace to OK their visit.
IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lady4law Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2011 at 9:54pm
Trip2
I wonder if they lost it or misplaced it, but it was very strange. we requested a copy of my blood work and the sheet I was given had no record of my CA15-3 results. However my PCP, who also receives a copy of every record, was the one that informed me of the rise in the count. I looked over my printout and there's no way it could have not printed at the bottom as all tests were in alphabetical order. There is no missing lines between the top, date name, and the sign off at the bottom. Very strange - right?

IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DawnP Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2011 at 10:31am
Lady4law,
If my Oncologist said to me "Not my field" or "who knows?", I'd get a new Oncologist immediately!!!  I see you're getting a 2nd opinion.  That's a perfect thing to do!

My lab printout doesn't show the cancer marker either.  It's a test that's done off-site and they do not get the results until the next day. 

You are correct to listen to your body and react accordingly!  My very best to you.  Let us know what comes of your 2nd opinion. 


DX 4/10 4.5 cm lump 5 of 14 nodes positive Had bilat mast chemo (AC&Taxol) and Radiation. Clear PET scan 10/10. Recurrence in 3 nodes 1/11. Starting Carboplatin & Gemcitabine.

Dawn
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2011 at 7:15pm
Lady4law please keep us updated, all my best wishes everything is ok.
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lady4law View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lady4law Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2011 at 6:40pm
Dawn:
All my blood work is done "off site", in fact it is sent to San Diego.
My oncologist is located in Beverly Hills, Cedar's Sinai (Los Angeles) - Go figure.
And all the results are shown on the lab's print out.
It's been present on past results

Still waiting on second opinion Onc, I contacted my son's and I think they are trying to get insurance approval, like that will happen.
IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lady4law Quote  Post ReplyReply Direct Link To This Post Posted: Mar 08 2011 at 2:58pm
I have been feeling, nmot only the pain in my spine, but now in my legs and right hip. My husband emailed out PCP regarding the second opinion and she "claims" it had been approved 2 MONTHS - hummm, I wonder maybe trying to cover her ----. Nevertheless, I still do not have an approval from insurance so I called the 2nd opinion Onc to see what they would charge for a second opinion without insurance. $900, and they were giving me a 60% discount. This only gets worse by the day.  
IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip
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