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Topic: Multi-centric question

Forum: Mixed Type Breast Cancer — Meet others who have mixed type breast cancer.

Posted on: Feb 6, 2012 04:40PM

comingtoterms wrote:

Did anyone with a multi-centric diagnosis have all of their tumors tested for ER/PR/Her2? Mine were in diffferent quadrants and I never understood how a decision could be made about treatment based on the pathology of only one tumor. I had five lesions all together. Thanks, Tammy

Dx 1/9/2009, DCIS/IDC/IDC: Tubular/IDC: Mucinous/IDC: Cribriform, Left, 2cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2-
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Feb 7, 2012 11:50PM kathleen1966 wrote:

Hello. I think I had three lesions.  Unless the 1.6 lesion was NOT the 1.3 lesion, than I had four lesions (sorry to confuse).  I am agitated that I really don't know this.  And no, they did not test all of my tumors.  Only the largest one.  I have often wondered this as well.  Even now, I consider having a second pathology.  I really do feel all tumors should be tested.  However, I know that my largest tumor was 1.6 (I assume this was the 1.3 one they biopsied earlier), the next one was .5 (this one actually was in the initial biopsy) and the others were even smaller.  The majority of my issue was high grade DCIS (7 cm) but as this is not invasive (and yet it was), that number did not factor in for me. I see that you are even farther back than me and you also wonder about this still Frown
Dx 7/26/2010, IDC, 1cm, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2+ Dx 7/26/2010, DCIS, 6cm+, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2+ Dx 7/26/2010, Paget's, 1cm, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2+ Surgery 8/23/2010 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 9/7/2010 Herceptin (trastuzumab) Chemotherapy 9/7/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 3/1/2011 Breast, Lymph nodes
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Feb 9, 2012 12:21PM comingtoterms wrote:

Hi Kathleen, I guess it just goes to show that the questions never really go away! I almost feel like I am so far out of treatment that this is like going backwards, but I am also in the middle of making a major decision about shutting down my ovaries and feel that knowing everything I can will help me make the best decision for me. I have SOOOOO many questions about things that just don't seem right to me. Thanks for responding!  Tammy
Dx 1/9/2009, DCIS/IDC/IDC: Tubular/IDC: Mucinous/IDC: Cribriform, Left, 2cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2-
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May 14, 2012 09:22PM Houndmommy wrote:

I had 4 tumors and they told me that they did test all for ER/PR HER2 - I asked because it wasn't clear that they had tested all of them.  For the oncotype they only tested the largest and my treatment (no chemo) was based on that.

Unimx 5/17/10 - IDC, ILC, DCIS, LCIS found. Oncotype DX 14. All tumors are ER/PR+ and HER2-. Dx 4/26/2010, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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May 24, 2012 03:16PM Rocket wrote:

I had three tumors in different quadrants, and each were tested for ER, PR and HER2. Only the largest was tested for the Oncotype because all the tumors were histologically similar. I have heard of other women having two separate tumors tested using the Oncotype and resulted in different numbers. I don't know if hers were histologically similar however.

DX 1/5/10 IDC and Lobular 3 tumors rt breast, multicentric 3.9cm, 2.1cm, 1.7cm; bi-lat mastectomy 1/22/10 no recon, 2 - TC, 1 - AC; 36 Rads, Oncotype 16; Arimidex; Hyst/Ooph 8/11/10; lymphedema arm & trunk Dx 1/5/2010, ILC/IDC, Right, 3cm, Stage IIA, Grade 2, 0/13 nodes, ER+/PR+, HER2- (FISH)
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May 28, 2012 03:37PM comingtoterms wrote:

These are great answers. I am wondering if sometime in the year 2010 the testing protocol changed because there was never even an option for me in 2009. It is something I will always wonder about and unfortunately, will never get the answer to. Is it odd that for both of you the tumors were histologically similar? Is that what is expected and therefore why they typically don't test all of them?

Dx 1/9/2009, DCIS/IDC/IDC: Tubular/IDC: Mucinous/IDC: Cribriform, Left, 2cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2-
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May 28, 2012 05:39PM dlb823 wrote:

Tammy, I had 4 lesions taken in two separate surgeries in 2008.   All were tested, except the smallest one, which was too small (1mm) to test for Her2.  What was interesting to me is that mine were a mix of IDC, ILC and Tubular.  Also, the ER/PR varied quite a bit in them, which seemed odd, but the Her2 was consistently negative in the ones that were tested.  Do you know if all of your 5 lesions were all the same type of bc?    

I never had the Oncotype-DX because it wasn't commonly done for node positive bc back in 2008, and my insurance company didn't authorize it at the time.      Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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May 28, 2012 06:28PM - edited May 28, 2012 06:29PM by Rocket

Comingtotems, I had asked my MO why the three tumors weren't oncotyped, and she checked with the pathologist who stated that if they were histologically similar, they didn't need to test all three, and that they should have the same Oncotype score. I can't say I believe that answer, but it's the only one I was given. If my gynecologist had paid attention to my concerns that I had two thickened areas in the same breast for five years, and hadn't instead told me it was fibrocystic breast tissue because nothing showed up on my yearly mammograms due to my extremely dense breasts, I might not have had to make the decision to have chemo and rads. If it were caught sooner, I might have only needed the mastectomy. Each of my three tumors was HER2-, but there was some concern at the beginning that they were HER2+. I needed to have two different tests to determine that as one was inconclusive. They were all ER+/PR+, but they were all mixed ductal and lobular types - a veritable cancer soup! I was extremely blessed to have no lymph node involvement, especially with larger tumors (3.9 cm, 2.1 cm and 1.7 cm). I had an 83% chance that they would find cancer in my lymph nodes, but out of 13 nodes, no cancer was found. For me it was a miracle!

DX 1/5/10 IDC and Lobular 3 tumors rt breast, multicentric 3.9cm, 2.1cm, 1.7cm; bi-lat mastectomy 1/22/10 no recon, 2 - TC, 1 - AC; 36 Rads, Oncotype 16; Arimidex; Hyst/Ooph 8/11/10; lymphedema arm & trunk Dx 1/5/2010, ILC/IDC, Right, 3cm, Stage IIA, Grade 2, 0/13 nodes, ER+/PR+, HER2- (FISH)
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Jun 10, 2012 07:30PM comingtoterms wrote:

All of my tumors were tested and I, too, had a "cancer soup"! What wasn't tested, however, was the ER/PR/Her2 status of each tumor.

Dx 1/9/2009, DCIS/IDC/IDC: Tubular/IDC: Mucinous/IDC: Cribriform, Left, 2cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2-
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Jun 25, 2012 01:05PM grejulian wrote:

Hi everyone - i am new to this forum and need some advice.  I was just diagnosed 11 days ago with DCIS after having had breast pain / painful swollen lymph nodes for about 9 months. (long story but in Oct last year my OB/gyn told me it was nothing.....pcp ordered a dx mammo finally).  Anyway - my surgeon indicates that there should have been no pain with my diagnosis and it is not in my lymph nodes..........and i am wondering how they know this.  they did an MRI and it showed no lymphadenopany - however - the lymph nodes that i am concerned with are in my underarm....did the MRI show those lymph nodes?   I really dont want to have a worse problem than stage 0 BC.......however - my body and intuition are telling me they are missing something.  Does anyone have any advice on how to discuss this with my doc?  I want to make sure that I get the right treatment and can put this all behind me.  Anything you can provide is greatly appreciated!!!!  (Good luck to you all on this rather uncomfortable and awkward journey!!!)

Dx 6/14/2012, DCIS, 2cm, Stage 0, Grade 3, ER+/PR+, HER2-
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Jun 25, 2012 01:17PM dlb823 wrote:

grejulian... Was your DCIS diagnosed from the mammo only?  Have you had a biopsy?  I'm not sure how any surgeon can say that you have only DCIS without excising the area to be sure.  The reason I say that is, it's not uncommon for a tiny bit of invasive bc to be found within an area of DCIS, which is a non-invasive form of bc.  And anything smaller than about .5 cm may not show up on imaging -- even on MRI.  (I had a 4th, 1mm spot that didn't.)

Pure DCIS does not travel, so would not be in your lymph node(s).  That part of what you've been told is correct.  What I don't quite get is how your surgeon can be 100% sure your dx is 100% DCIS.

My best advice would be to get a second opinion, preferably from a breast-only surgeon.  You can find that type of specialist at these NCI-designated medical centers:  cancercenters.cancer.gov/cance...   Unfortunately, general surgeons (the type of surgeon many women are initially sent to) may not be quite a thorough in his/her assessment.  Don't be afraid to follow your gut instinct and seek a definitive explanation for the swollen nodes.      

Please keep us posted on what you find out.    Deanna 

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jun 25, 2012 01:39PM grejulian wrote:

Thank you Deanna.  I am seeing a Breast Only surgeon - and i did a lumpectomy after a sterotactic showed ADH @12 and fibrous tissue @10.  The 10 was misdiagnosed with the stereotactic bx and it returned as DCIS after the lumpectomy.   Apparently the margins are borderline so i need to have another lumpectomy in a couple of weeks but I see the rad/onc tomorrow and will discuss further - and see the surgeon again and will attempt to communicate better my concerns. 

I will keep you posted.

Dx 6/14/2012, DCIS, 2cm, Stage 0, Grade 3, ER+/PR+, HER2-
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Jun 25, 2012 06:11PM Laural wrote:

I had a BMX for IDC in the left breast, and an inconclusive MRI finding on the right. It turned out to be ILC on the right. Both tumors were oncotyped, as well as having ER/PR/HER2 testing (done as part of the oncotype testing). The smaller tumor on the right was actually the higher oncotype score which necessitated chemo. Glad I trusted my intuition and not the doc's initial recommendation to do only a left lumpectomy.

Dx 9/18/11; Stage 1 IDC on left, 1.2 cm. Grade 2, 0/2 nodes positive; Stage 1 ILC on right, 1 cm. Grade 2, 0/13 nodes positive; Acute leukemia as young adult and secondary MDS ever since. Through it all, God is faithful.
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Jun 25, 2012 08:02PM Rocket wrote:

My OB/GYN kept telling me my three tumors (all palpable) were fibrocystic breast tissue because my Mammograms were normal for five years. I so wish I had followed my gut instinct and insisted that he at least do a fine needle aspiration. He never recommend any other test, and as you can see from my dx below, he was wrong. It could have turned out much worse for me. I'm very fortunate to be alive. Follow your gut - always IMHO.

DX 1/5/10 IDC and Lobular 3 tumors rt breast, multicentric 3.9cm, 2.1cm, 1.7cm; bi-lat mastectomy 1/22/10 no recon, 2 - TC, 1 - AC; 36 Rads, Oncotype 16; Arimidex; Hyst/Ooph 8/11/10; lymphedema arm & trunk Dx 1/5/2010, ILC/IDC, Right, 3cm, Stage IIA, Grade 2, 0/13 nodes, ER+/PR+, HER2- (FISH)
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Jun 27, 2012 08:33PM - edited Jul 11, 2012 11:47PM by Chris13

I just had a call from the onco, who was at a tumor board discussion of my case. I had ILC, 2 tumors 1.6 and 2 smaller. My oncoscore was 8. But with the size of the tumors, and my age (at 65 too young to say AI only, and too old to say chemo for sure), they decided to oncotype the 2nd tumor. If same low score, no chemo.

 Seems that all large tumors should be tested, not just one. How did they choose the one? Of course I'm  hoping the 2nd tumor is consistent. I think the path on the tumors right after surgery showed all to be low mitosis. Not positive if all the tumors were tested, though. Is that usual? I may have to call my BS for that.

"To attend to the moment is to attend to eternity." 2 ILC tumors 1.6. 1/4 positive nodes. Oncotypes 8 & 15. No rads/chemo. Dx 2/24/2012, ILC, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Reconstruction (right): DIEP flap Surgery 5/1/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 8/1/2012 Arimidex (anastrozole)
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Jun 28, 2012 07:27PM Rocket wrote:

Chris, it is standard for the pathology report to test each of the tumors, however it wasn't standard two years ago for them to Oncotype all of them. They only checked the largest of mine. I did however have chemo even though my Oncotype was 16. The fact that your tumors are grade 1 may help you avoid chemo. Mine were grade 2. All my best.

DX 1/5/10 IDC and Lobular 3 tumors rt breast, multicentric 3.9cm, 2.1cm, 1.7cm; bi-lat mastectomy 1/22/10 no recon, 2 - TC, 1 - AC; 36 Rads, Oncotype 16; Arimidex; Hyst/Ooph 8/11/10; lymphedema arm & trunk Dx 1/5/2010, ILC/IDC, Right, 3cm, Stage IIA, Grade 2, 0/13 nodes, ER+/PR+, HER2- (FISH)
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Jul 11, 2012 03:29PM shellw wrote:

All of my tumors tested ER/PR + and HER 2 negative

primary tumor was grade 3 and 2.5 cm - Ki 67 - -65% @ 2 o'clock

secondary tumor was grade 2 - 12 mm ki 67 - 40% also @ 2 o'clock

third tumor was grade 1 - 7 mm ki 67 40% at 8 o'clock

God doesn't put more on you than you can bare....He must think I'm training to be a weightlifter! Dx 5/30/2012, 2cm, Stage IIB, Grade 3, ER+/PR+, HER2- Chemotherapy 7/4/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 11, 2012 03:39PM comingtoterms wrote:

Sooo... if all tumors should have been tested for pathology, then Chris, you are not alone. I had five and only the largest was tested. Or I assume so, because there was only one reference on the pathology report despite lesions in different quadrants.  Tammy

Dx 1/9/2009, DCIS/IDC/IDC: Tubular/IDC: Mucinous/IDC: Cribriform, Left, 2cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2-
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Jul 11, 2012 11:49PM Chris13 wrote:

I believe all the tumors were tested on path, but the oncotyping was only on one. I'm still waiting for the 2nd oncoscore. Fingers crossed it is also low.

"To attend to the moment is to attend to eternity." 2 ILC tumors 1.6. 1/4 positive nodes. Oncotypes 8 & 15. No rads/chemo. Dx 2/24/2012, ILC, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Reconstruction (right): DIEP flap Surgery 5/1/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 8/1/2012 Arimidex (anastrozole)
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Jul 12, 2012 12:12AM lisa-e wrote:

I had two IDC tumors, in different quadrents.  Both were tested for er/per/her by the pathology lab.  Both were er/pr positive, but one was 99% or 98% er positive and the other only 48% er positive.  I did have oncotype tests on both of tumors and the results were different, 16 for the 48% er+ tumor and 8 for the other one.  I did have to insist on testing both of the tumors.  My oncologist told me he had never heard of insurance paying for two oncotype tests.  I told him I didn't care and to go ahead and order the second one.  My insurance did pay and I was glad to have the info to help me decide with the chemo versus no chemo decision.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3 Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Left, Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Jul 12, 2012 11:03AM - edited Jul 12, 2012 11:05AM by Chris13

My insurance is paying for the 2nd test or the oncotype company is working it out somehow. A rep of the company was at the tumor board discussion, and according to my MO said they would work things out. Also, when it is questionable about chemo, seems more cost efficient for insurance to pay for the 2nd oncotyping, and save on chemo therapy if that is the best course for the patient. Chemo is much more costly than the $4000 oncotype test.

Lisa-e, what did you do about chemo with one low score and one intermediate?  My MO recommended chemo even with the one low score (8) but I had a node involved and am at an "intermediate" age (65).

ILC does tend to be more similar, I think. All had same ER, grade, etc. 

"To attend to the moment is to attend to eternity." 2 ILC tumors 1.6. 1/4 positive nodes. Oncotypes 8 & 15. No rads/chemo. Dx 2/24/2012, ILC, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Reconstruction (right): DIEP flap Surgery 5/1/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 8/1/2012 Arimidex (anastrozole)
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Jul 12, 2012 11:21AM lisa-e wrote:

Chris13, I decided against chemo.  My onc initially recommended chemo, but that was before I insisted on getting an oncotype score for the second tumor.  (I had a long, drawn out diagnosis).
What I did was look at the chance that either tumor would cause a recurrence.  That chance came out to somewhat under 16% and chemo would have reduced the rate of recurrence by about 4%.  But that is what I figured the chance of having permanent side effects from chemo.  So I opted out and my onc agreed with my logic.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3 Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Left, Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Aug 2, 2012 11:41AM Chris13 wrote:

Wow, Lisa-e, we had the same scores. My second oncoscore came back 16, recurrence 10. My first tumor was 8 recurrence 6. MO concerned (since I had one positive node and 16 is toward top of low range) but recommended no chemo...she knew I was leaning in that direction. So onto to the AI again.

 Insurance did pay for both, even with the mistake of a wrong sample being sent.  Makes financial sense on their part, as chemo is so much more expensive.

"To attend to the moment is to attend to eternity." 2 ILC tumors 1.6. 1/4 positive nodes. Oncotypes 8 & 15. No rads/chemo. Dx 2/24/2012, ILC, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Reconstruction (right): DIEP flap Surgery 5/1/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 8/1/2012 Arimidex (anastrozole)
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Aug 5, 2012 01:42PM comingtoterms wrote:

Does anyone know whether pathology tests can be re-done? I want to know what the ER/PR status is of the other four tumors that were found.

Dx 1/9/2009, DCIS/IDC/IDC: Tubular/IDC: Mucinous/IDC: Cribriform, Left, 2cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2-
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Aug 6, 2012 07:08PM Chris13 wrote:

My two larger tumors were hormone tested after my two biopsies. There should be path results of each of your tumors, even if you didn't have more than one oncotype test done, I would think.

 But if you had one ER/PR plus tumor, my understanding is you will be treated as ER+ even if the other tumors were not....which I believe is rare but happens.

"To attend to the moment is to attend to eternity." 2 ILC tumors 1.6. 1/4 positive nodes. Oncotypes 8 & 15. No rads/chemo. Dx 2/24/2012, ILC, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Reconstruction (right): DIEP flap Surgery 5/1/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 8/1/2012 Arimidex (anastrozole)
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Aug 6, 2012 09:27PM Rocket wrote:

All of my tumors were tested. I had multi-centric not multi-focal, so each of my tumors originated separately. They were all ER/PR+ and histologically similar. Each of my tumors was listed separately on my pathology report. I do believe they can test the tumors years later. I don't know who pays for it however, especially if it doesn't affect the treatment regimen.

DX 1/5/10 IDC and Lobular 3 tumors rt breast, multicentric 3.9cm, 2.1cm, 1.7cm; bi-lat mastectomy 1/22/10 no recon, 2 - TC, 1 - AC; 36 Rads, Oncotype 16; Arimidex; Hyst/Ooph 8/11/10; lymphedema arm & trunk Dx 1/5/2010, ILC/IDC, Right, 3cm, Stage IIA, Grade 2, 0/13 nodes, ER+/PR+, HER2- (FISH)
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Nov 2, 2012 12:16PM - edited Mar 23, 2013 10:06AM by Shrek4

0

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Nov 2, 2012 12:57PM w6uqfcgomeo wrote:

Hi Day:  My name is Mary and I also have IDC, DCIS AND lCIS...don't know yet if I have the LDC yet.  I am interested in what type of sub-type componets you had .  Did you have cribiform or micropapillary?   Hope to hear from you.  Mary

Dx 9/7/2011, IDC, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 11/11/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Dec 20, 2012 08:15PM - edited Dec 27, 2012 10:03PM by Deyrl

This Post was deleted by Deyrl.
Boobless and happy about it - my guy says I'm more aerodynamic now. While I appreciate positive thinking, I think it's important to put this out there too: Life hurts. Dx 11/9/2012, ILC, <1cm, Grade 2, ER+/PR+, HER2- Dx 12/12/2012, LCIS, 1cm, Grade 2 Dx 12/12/2012, DCIS, 2cm, Grade 2 Dx 12/12/2012, IDC, <1cm, Grade 2, 0/3 nodes Surgery 12/12/2012 Mastectomy: Right; Prophylactic mastectomy: Left
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Jan 8, 2013 01:15PM Wren44 wrote:

One of my tumors was ER+PR+ and grade 1, the other was ER+PR- and grade 2. No oncotype on either one. I was 71 which may have been a deciding factor not to do the oncotype.

Lumpectomy and re-excision followed by mastectomy of right breast. Five years of anastrasole completed.
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May 4, 2013 12:31PM LoriBach wrote:

One of my tumors was ER/PR+ and HER2- and the other was ER/PR- and HER2+ - go figure...

Lori Dx 5/14/2012, IDC, Right, 2cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2+ (FISH) Chemotherapy 8/15/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 1/11/2013 Targeted Therapy Herceptin (trastuzumab)

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