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Topic: CA 27.29 of 117. I'm worried about recurrence now

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Oct 5, 2021 06:46PM

quiltrunner wrote:

My tumor markers have always been in the 20's. Suddenly 117. My annual appointment for Nov 5 just got bumped up to this Thursday. Any information is welcome?


Dx 8/3/2012, ILC, 6cm+, Stage IIIA, Grade 1, 4/16 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/9/2012 Cytoxan (cyclophosphamide), Ellence (epirubicin) Chemotherapy 12/21/2012 Taxotere (docetaxel) Surgery Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Reconstruction (left); Reconstruction (right)
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Oct 5, 2021 08:40PM MinusTwo wrote:

Quiltrunner - sorry, mine have run from 25-35 for the last 7 years. I have been told that many docs won't even do this test since the results have too large a margin for error. Hope everything is OK.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 6, 2021 10:23PM wallycat wrote:

My current onco has never run a tumor marker.


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Oct 7, 2021 03:25PM 2019whatayear wrote:

I hope everything goes well today. I suppose they may want to retest in a month or send you for a scan.

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Oct 7, 2021 05:47PM Spookiesmom wrote:

My MO does run them , but says they aren’t always reliable. Early this year, there was a jump of about 30 points. I freaked. BUT my DH died the week it was drawn. Next lab was back to my normal. And has been since.

So has something changed for you that could cause it?

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Oct 7, 2021 07:57PM MinusTwo wrote:

QuiltRunner - how did the appointment go? Hope everything is OK.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 7, 2021 08:26PM quiltrunner wrote:

I’m scheduled for a brain MRI Tuesday and PET scan on 11/15 unless they can find a spot to get me in sooner. She didn’t think retesting was needed. Obviously I’m not feeling very confident that there isn’t a recurrence but I’m surprisingly calm.

Thanks for asking.

Dx 8/3/2012, ILC, 6cm+, Stage IIIA, Grade 1, 4/16 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/9/2012 Cytoxan (cyclophosphamide), Ellence (epirubicin) Chemotherapy 12/21/2012 Taxotere (docetaxel) Surgery Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Reconstruction (left); Reconstruction (right)
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Oct 8, 2021 03:06PM MinusTwo wrote:

Fingers crossed Quilt Runner.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 10, 2021 09:42PM edwards750 wrote:

My oncologist never ran those tests either because of too many false positives. My BC DX in 2011 was IDC, Grade 1, Stage 1b. This past August it was 10 years since I was DX. I am so blessed and grateful.

I did have a friend who experienced the same jump in numbers as you. Her MO told her he would retest in 2 weeks since so many things can affect the increased score. I’m sure you are nervous. Everything to do with BC makes us all the same way. I guess we will always be looking over our shoulders because we been branded with this insidious disease.

Keep the faith and keep us posted.

Diane


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Oct 11, 2021 02:34PM 2019whatayear wrote:

It good that your doctor is running the tests but since you can't get in until 11/15, it kinda stinks you can't get test rerun in the meantime, to see if it is still high or not.

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Oct 11, 2021 07:19PM - edited Oct 11, 2021 07:24PM by ShetlandPony

Hi, quiltrunner. How often do you have the tumor marker checked? I'd say several in a row rising over a few months is more concerning than one higher reading. That is not a super-high CA 27.29 number in my opinion. That said, I don't want you to feel discounted, and I think a PET-CT is appropriate and the way to get out of the difficult place of not knowing if something is up or not. For some people TMs are accurate, and for some they are not. Be aware that in some cases, only in some, ILC is not very FDG-avid and does not show up on PET. So if the scan is clear, I would have those TMs monitored for a few more months or request a different type of scan. There is more info about ILC scanning at lobularbreastcancer.org. As far as the brain scan, brain mets are not so common with ILC, so hang onto that. Please update us here when you get scan results. It sounds like your onc is on top of things.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Oct 11, 2021 11:08PM - edited Oct 12, 2021 12:12AM by quiltrunner

Thanks all for your input. I'm not concerned about the brain MRI and I too think it's likely a huge waste of time and money. I may call tomorrow and see if I can insist on being retested and then if it's still elevated schedule the PET. I'm hating this waiting! Of course now I'm concerned the PET isnot reliable testing for ILC. UGHHHHH

Dx 8/3/2012, ILC, 6cm+, Stage IIIA, Grade 1, 4/16 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/9/2012 Cytoxan (cyclophosphamide), Ellence (epirubicin) Chemotherapy 12/21/2012 Taxotere (docetaxel) Surgery Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Reconstruction (left); Reconstruction (right)
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Oct 11, 2021 11:25PM - edited Oct 11, 2021 11:25PM by Pessa

My MO was getting tumor markers twice a year. They went up significantly (don't remember which ones) after 3 years and I ended up with a new primary cancer in my lung, which I am dealing with now, but which is under control. No recurrence of the breast cancer..................

Dx 2/20/2010, IDC, <1cm, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 5/5/2010 AC Surgery 10/22/2010 Lumpectomy: Right; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 11/20/2010 Arimidex (anastrozole)
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Oct 12, 2021 06:12PM quiltrunner wrote:

Insurance is denying the PET and requiring a CT first. Is that going to be any more reliable?

Dx 8/3/2012, ILC, 6cm+, Stage IIIA, Grade 1, 4/16 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/9/2012 Cytoxan (cyclophosphamide), Ellence (epirubicin) Chemotherapy 12/21/2012 Taxotere (docetaxel) Surgery Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Reconstruction (left); Reconstruction (right)
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Oct 13, 2021 12:16AM - edited Oct 13, 2021 11:34PM by ShetlandPony

Each person/cancer is unique. I believe PET-CT is often more helpful than CT + bone scan, especially since it shows active vs. dormant cancer. And Dr. Ulaner, an expert in imaging ILC, says every ILC deserves a chance to be FDG-avid (seen on PET). That said, I would be ok with CT for a first scan to rule out mets. Insurance prefers CT because it is cheaper. You can advocate for a PET next if it seems advisable. Edited to add that I remember now that Dr. Ulaner said that if a patient's ILC is not FDG avid, then the radiologist should scrutinize the CT. Please read this article by Dr. Ulaner, an expert in imaging ILC. He discusses the standard modalities as well as the new FES PET.

https://lobularbreastcancer.org/lbca-scientific-blog/

(FYI for me all imaging modalities (FDG PET, CT, MRI) have shown the liver mets, though my tumor markers give the first warning of progression before the scan shows it. And no imaging has ever seen the presumed mets in the bile duct area.)

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Oct 22, 2021 09:07AM LindaSueH wrote:

My CA 27-29 is 733. I was happy because it finally went down from 956.


I can do all things through Christ, who strengthens me. Dx 5/6/2009, IDC, 2cm, Stage IIA, Grade 3, 1/19 nodes, ER+/PR+, HER2- Dx 2/4/2021, Right, Stage IV, metastasized to bone/lungs, Grade 3, ER+/PR+, HER2-
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Oct 22, 2021 10:41AM quiltrunner wrote:

it’s officially Stage IV. Biggest issue to hit first is radiating the tumor pressing against the superior vena cava. This time tumor markers were the big alert. Terrified of course.

Dx 8/3/2012, ILC, 6cm+, Stage IIIA, Grade 1, 4/16 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/9/2012 Cytoxan (cyclophosphamide), Ellence (epirubicin) Chemotherapy 12/21/2012 Taxotere (docetaxel) Surgery Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Reconstruction (left); Reconstruction (right)
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Oct 22, 2021 05:35PM - edited Oct 22, 2021 05:38PM by ShetlandPony

Oh no, quiltrunner. Damn. We are here for you. If you are up to talking, where did they find mets? Do you have a treatment plan yet? Are you coping ok?

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy

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