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Topic: Very, very interesting study on ILC

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

Posted on: Dec 31, 2019 07:48PM

jessie123 wrote:

Invasive lobular carcinomas (ILCs) account for 10–15% of all breast cancers. They are characterized by an elevated endocrine responsiveness and by a long lasting risk of relapse over time. Here we report for the first time an analysis of clinical and pathological features associated with the risk ...

I hope that I transferred this correctly. Basically this study talks about the importance of your KI67 score and long term recurrence risk. The really good news is they didn't find nodal status as important.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 31, 2019 08:32PM ShetlandPony wrote:

Jessie, can you tell us the title of the article?

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Dec 31, 2019 08:57PM OnTarget wrote:

Well not as exciting news for me with a KI67 of 40!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 31, 2019 09:39PM nadinem wrote:

I tried to post a link that didn't need to go through Facebook, but it says I can't post links at this time. What are the rules?

Nadine

Dx 10/16/2019, ILC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 12/20/2019 Lumpectomy: Right
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Dec 31, 2019 09:48PM MinusTwo wrote:

Nadine - I don't know but you can PM the moderators.

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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Jan 1, 2020 03:35AM MelissaDallas wrote:

https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-019-1234-9?fbclid=IwAR17mWhPOL-DB4DP3WYwenMkXvZOTAvlKrvjhZd1Lzw5WItL5PRVmGQIb2M


LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jan 1, 2020 05:33AM AnnC2019 wrote:

Thanks for this article. I don’t think Ki67 is referenced anywhere on my reports.

Dx 6/19/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 8/15/2019 Arimidex (anastrozole) Surgery 8/28/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Radiation Therapy 11/4/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 1, 2020 06:57AM claireinaz wrote:

Anne, mine (K167) isn't listed or given anywhere either. Would I have even been given one in 2011, I wonder.

I try not to get too caught up in these reports since I'm already doing what I can to keep recurrence at bay. I can't change the fact that I had ILC, the size of tumor, or + nodes. I see they weren't actually able to use endocrine therapy research in this study, and for me that helps me with some positive thought: because I have been on AIs for 8 years now, I want to believe I've lowered my DM recurrence rate later on. Since the study doesn't tell me what more I can do, or take, or pursue to keep myself safe from recurrence, I let a lot of these articles go--although I'm not discounting that they might help someone else.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jan 1, 2020 09:09AM - edited Jan 1, 2020 09:10AM by wallycat

I'm with Claire....I also did not get a Ki-67 score and I really do not want to go back and look---my doc is not eager to have me scanned and I can't get mammograms since I have no boobs, so it is a symptom-watch vigilance.

None of us expected to get cancer and many of us were "doing all the right stuff" but we are still here....so I think some of us will be lucky to not see a recurrence despite what we know or what we do. Cancer is a crapshoot.


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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Jan 1, 2020 09:57AM trinigirl50 wrote:

Well I always notice that none of the studies ever include anyone with more than 10 positive nodes. Which makes me laugh - does that mean we don't count or are we written off immediately? Anyway, I was happy to see that nodal status or PGR status in ILC wasn't as much a prognostic factor for late reoccurrence. Not that it changes anything of course. Interestingly enough (and despite the prognosis) the group of high risk women based on CTS5 (all 3 of them) did not have any recurrence. I would presume that those 3 high risk women were taking their AIs religiously and had chemo, because that's what you do when you are high risk. So there you go.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Jan 1, 2020 10:05AM - edited Jan 1, 2020 10:05AM by wallycat

They also only checked 8.9 years out, so the 10 year window.....do they know if this trend follows after 10 years? They didn't know after 5, so maybe they don't know specifics about after 10 years.

I keep hoping better, more reliable treatments (CURE!) come along so we don't have to sit here, frightened of our destiny.


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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Jan 1, 2020 11:13AM jessie123 wrote:

The reason it does help me is that I have refused estrogen blocking therapy (AI's). My surgery was last Feb. I am old (70) and live alone with no living family. I already have osteopenia -- I am more worried about the osteoporosis and the therapy for it. I have had periodontal disease since my 30's and because I have seen the dentist every 3 months since then I just recently lost my first tooth. My oral surgeon said he won't pull a tooth until a patient has been off fosamax for 6 months. How to you live with a tooth ache for 6 months or even 3 months. If I break a hip I don't have family to come help. Both of my parents broke their hip in their later years. Also both had dementia ( I cared for them in my home) I have no one to help me if I break a hip due to osteoporosis. I am very worried about not taking the Al ---- that is why I'm doing so much reading on prognostic factors. A test that I will privately pay for when I see the oncologist in two weeks is a test for circulating tumor cells. That's also prognostic. I know most people don't have a recurrence, but this decision not to take the Al is very stressful. I was a social worker with the elderly throughout my working days --- I know what happens to the elderly if they don't have attentive children. So if I can determine that my recurrence risk is truly low then I'll feel better about taking the risk of refusing the drugs

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Jan 1, 2020 11:46AM momand2kids wrote:

I also don't think I got a KI67 report almost 12 years ago.... I wonder if that new analysis they do (cannot remember the name) but they did it at my last appointment-can give you some sense of what possibility of recurrence or DM is-- not oncotype, but something else.... anyway, nurse told me I was in teh very low range-- of course I know, as we all do, that recurrence can happen. I just like to think I did everything I coudl at the time with the information I had and doing the best I can now to live my best life- but I know I cannot prevent anything.... just going to keep moving forward.... all the best to everyone and happy new year!!!


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Jan 1, 2020 12:45PM MikaMika wrote:

momand2kids,

May I ask you about your choice of the AI? Did you take Femara only?

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Jan 2, 2020 03:42PM Gracejoy wrote:

Jessie thank you for posting this article. It is very encouraging.

It is the first time someone published on ILC patients alone and late distance metastasis after 5 years. I am Molecular Biologist who work in Breast Cancer research in a lab but not in clinical settings.Therefore I see day to day how difficult for us to grow ILC cell lines luminal A-and B under the best conditions in tissue cultures as compare to triple negative IDC cell lines which doubles overnight. As an ILC breast cancer patient myself I always wondered about DM after 5 years. This paper confirmed that positive nodal status is important in first 5 years but no after 5 years for DM. Yet Levels of KI67 determines DM after 5 years. Oncotype DX gene profile which determines DM risk at 10 years it includes KI67 measurement in their calculations. if Oncotype is low risk then your KI67 level is low too. Some of you are writing I don’t know my KI76 level but if you have your Oncotype score as low risk then most likely your KI67 is low. If you never had Oncotype DX test done then when you first had your pathological report after surgery it will indicate what kind of ILC you have such as Classical ILC (most ILC patient has this kind) which normally has low KI67 and therefore grow very slowly (therefore not a good candidate for chemotherapy). But if you have pleormophic ILC then this kind grow very fast therefore KI67 is high and therefore they are recommended to have chemotherapy as they will respond well to it.

I always wondered having a large BC mass and one positive node personally if I did right thing not to have chemotherapy. But having no DM first 5 years confirmed my medical oncologist being right in not recommending chemotherapy for me. Having a Classical ILC (as it grows very slowly) my MO told me it will not respond well to chemotherapy and he said you will only have 1-2 % benefits and 100 % of all the side effects. I am so thankful to my MO even more now after seeing this article that we did the right thing not to have chemotherapy in my case.

Best to all my breast cancer sisters.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 2, 2020 03:59PM OnTarget wrote:

My KI67 was 40 and I felt like it had to have some significance. I'm glad I chose to do chemo for whatever it is worth.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 2, 2020 06:41PM jessie123 wrote:

Gracejoy -- I'm so glad that this article was helpful --- that is what I was hoping the response would be ---- for those who were node positive to feel some relief. The article highlights the strong difference between IDC and ILC.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Jan 2, 2020 06:56PM momand2kids wrote:

Gracejoy-thanks for your information--


Mika Mika-I did 5 years of femara and for the first 3 years I also did lupron because I was pre-menopausal.


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Jan 2, 2020 07:49PM MikaMika wrote:

momand2kids, thank you!



Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Jan 2, 2020 09:43PM wallycat wrote:

Gracejoy, so if you have intermediate oncotype, should you assume mid-range Ki score? And not sure how that would equate to the study.....


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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Jan 2, 2020 10:46PM Gracejoy wrote:

Wallycat, one cannot say it with certainty that if you have intermediate Oncotype score like 20 this means mid range Ki-67 levels but one can assume so. Because Oncotype measures 21 genes among them one of them is Ki-67 and come up with a score.

I wonder if your medical oncologist can be able to request your Ki-67 levels from Oncotype DX company.

In this article they consider Ki-67 value < 20% (low) and ≥ 20%(high).

For example, my Oncotype DX score was 16 (low) and my pathologist independently counted my Ki-67 level ın my breast cancer tissue on a slide shortly after my initial surgery as less than 15 which is also considered as low

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 3, 2020 01:05AM Gudrun wrote:

Gracejoy, thank you very much for your clarifications on this study, which brings such hope to node positives after having achieved 5 years.

However, having finished 6 years being node negative with a Ki67 of 20% personally, I do not know what my odds are. On my doctor's advice I stopped AI therapy after a bit more than 5 years.

Best wishes to you and all of you. G

Myself: dx at 55 in 2013, ILC, stage IIa, G2, ER+/PR-/HER2-, KI67 20%, BMX, Letrozole 5.5 years. Daughter: dx at 28, stopped antihormonals after 2 years to have a baby and restart tx afterwards: Dx 8/2015, IDC, Left, 3cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ (IHC) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left; Reconstruction (left): TUG flap
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Jan 3, 2020 08:06AM wallycat wrote:

It will be 13 years starting april, so not sure there is any value to know anymore. I'm sad to say that in my head, I just assume somewhere down the road I will have a recurrence. I hope I am wrong. Strange this study did not have an intermediate grouping. If my oncotype score matches my ki, then I am sitting on the fence, LOL.


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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Jan 4, 2020 05:59AM claireinaz wrote:

Wallycat, you and I are similar in that we've simply accepted that whatever happens (cancer or no) will maybe happen, regardless of how many studies are done like this. I know that my + node status pushes me into high risk. Known that since the beginning. I know that ILC recurs later and I'm facing that too, also not something I'm happy about but can't change it.

I am interested in any research like "longer AI use results in higher survival rate", etc. which seems to be truer than ever before according to many studies. I'm happy about that since I've been taking one now for nearly 8 years. I think mostly I just try to live my life in the moment (sometimes difficult but not impossible with cancer PTSD) and continue to do everything I can to care for my health. Right now I'm in the middle of a 30 day yoga challenge-30 yoga classes in 30 days. It's good for my body and PTSD both, and something I CAN do.

Big love to everyone and Happy New Year-

Claire in AZ


9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jan 4, 2020 07:14AM wallycat wrote:

Claire, I just posted an "inspiring story" on the clinical trials board. "They" can say anything and tweak or sort through studies, but in the end, we are all an experiment of one.

The link I posted was about a woman with breast cancer that thought all was great....then years later, developed ovarian cancer that spread. The docs did what they could back then and gave her 6 months to live. She's 31 years out and still here.

It is wise to learn about options and challenges and the journey forward with what it may hold, but ultimately, many of us never thought we'd be here because we did all the healthy, careful things already so failed at those statistics.

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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Jan 4, 2020 08:34AM momand2kids wrote:

Claire and Wally

I do think that as time goes on, the reality is that it really is a crapshoot- like so many others, I was not a "candidate" for breast cancer. What I can say is that it certainly prepared me for the subsequent thryoid cancer then melanoma (also things I would not be a "candidate" for). I have never worried too much (after the first year) about bc returning- I did all I could-but I am a realist and I know now that any damn thing can happen. But when I think I might go down a rabbit hole or read a new study that does not exactly line up with my stats, I am reminded of what someone on the Stage 4 board once posted which was something like" if you worry . about recurrence and it does not happen, you will have wasted all that . time. If you worry about recurrence and it does happen, you were not able to control it anyway" . something like that-I am paraphrasing..

The other thing is that while all of the data and new studies are very helpful and I think will make huge differences going foward (think Tailor X) for those of us who have already made treatment decisions and executed, all we could do was make the best choice at the time with the information we had. I know after Tailor x I was relieved that I could see that I had made a good decision about having chemo-- and then when the recurrence scales could be done in onc;s office (I forget what it is called) I was relieved to see my recurrence or DM was really low. But then I will meet someone who will have had an entirely different situation and have moved to stage 4.... so I am not a Pollyanna about this--- but . I know the odds are low, so I try to focus there...


I love the idea of 30 days of yoga!!!!


Happiest of new years


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Jan 5, 2020 05:12AM claireinaz wrote:

Hi Momand2kids-

Agree with everything you've said; thanks for the yoga encouragement! I get 5 free classes if I complete the challenge so I'm motivated. Jessie123 I didn't mean that I didn't appreciate the sharing of information, either! We never know what study might help someone, for sure. Thank you!

Claire in AZ


9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jan 5, 2020 07:24AM trinigirl50 wrote:

just popping back in to say the MOST interesting thing about the study was that after 8.7 years median (meaning more women were closer to 10 years out if everyone was at least 5 years out) 89% of the women did not have any DMs.

That means that MOST women will not develop mets for at least 10 years. And of course I am hoping that will remain the trend over 20 years as well.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Jan 31, 2020 01:17PM Sandiegohoneybee wrote:

have no idea why thetdid not do a ki67 on me. I’m Er and her2 positive

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Feb 2, 2020 03:30PM jessie123 wrote:

I have been doing so much reading --- evidently Ki-67 can vary throughout different parts of the tumor. That explains why my ki67 was 6 after biopsy, but (I think) 11 after surgery. I'm going to call the Onco people tomorrow to see what their sample showed.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Feb 25, 2020 07:19PM karen1956 wrote:

Didn't read the article but skimming the posts it seems that since I don't have a Ki-67 score it might not be applicable....Also this month is 14 years since diagnosis. I know in my heart of hearts, that I didn't everything I could treatment wise. I eat healthy, maintain a healthy weight, walk daily 30 - 60 minutes. Started on Prolia in September 2019 due to osteoporosis and the slight benefit in prevention of bone mets. I know in the back of my mind, the BC can return but it is not the first thing or last thing I think about daily. Every day without BC is another day without BC (a friend's husband had leukemia twice and stem cell transplant and that is what his oncologist says about the cancer).

Wishing us all long healthy lives!!

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,

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