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Topic: Single Hormone Receptor Positive -> ER+/PR-/HER2-

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Sep 17, 2017 12:28PM

seemaryrock wrote:

Anyone else in this same boat? Would love input or sharing your experience. Feeling a little alone in this boat!

Married mother of 7-year-old son and 2-year-old daughter. Diagnosed at age 40. Mother had it 4 years ago and sister (46) was diagnosed 2 weeks after I was. Dx 7/19/2017, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/15 nodes, ER+/PR+, HER2- Surgery 8/30/2017 Chemotherapy 10/16/2017 AC Radiation Therapy Whole-breast: Lymph nodes Surgery Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Posts 361 - 388 (388 total)

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Mar 15, 2019 02:45PM - edited Mar 16, 2019 05:40PM by wanderweg

congratulations Patsy! Personally, I am going to count one year from the date I had my mastectomy. I figure that's when they removed the cancer, and I have no way of knowing if there was any residual cancer that the chemotherapy got.

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 15, 2019 08:23PM moth wrote:

Congrats Patsy! Like wanderweg I count from the surgery date so I'm 15 months out. (at least i'm assuming that when wanderweg typed 'mistake' it was an autocorrect for mastectomy ;) )

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Mar 15, 2019 11:10PM PatsyKB wrote:

Thanks, wanderweg and moth - I'll consider May 7 my anniversary date. It's my surgery date

“Ring the bells (ring the bells) that still can ring Forget your perfect offering There is a crack in everything (there is a crack in everything) That's how the light gets in.” -Leonard Cohen Dx 4/10/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- (FISH) Surgery 5/7/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 5/23/2018 Multi-catheter: Breast Hormonal Therapy 6/12/2018 Femara (letrozole) Surgery
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Mar 15, 2019 11:43PM Meow13 wrote:

Celebrate PatsyKB!

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Mar 16, 2019 08:07AM DebAL wrote:

hey patsy, great news! I also consider surgery date. I remember us going through all this at the same time. It's hard to believe it's been a year. Glad you are doing well!. I remember your saying "Onward!"

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/11/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/12/2018 Mastectomy: Left, Right Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/13/2018 Arimidex (anastrozole) Surgery 8/8/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/19/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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Mar 16, 2019 01:21PM Murfy wrote:

Onward and upward, indeed! Congrats! Had my one-year chemoversary last week and have never felt better. According to my insurance person, I can get a long-term care policy after 2-year remission which started on day of surgery. Looking forward to reaching THAT date!

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/13/2017 Mastectomy: Left Chemotherapy 1/12/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/31/2018 Aromasin (exemestane)
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Mar 16, 2019 02:14PM PatsyKB wrote:

Oh, thank you all for your good wishes. We need to celebrate everything we can in this life, don’t we?

Murfy, I love the “chemoversary” - the more celebrations the better, so 1st surgiversary on May 7 for me and 1st BrachyRadiation-versary on May 30. That ought to do it.

DebAL it was good to hear from you. Yes, I remember our parallel experiences.

I haven’t dropped into BreastCancer.org in awhile but I need to do so more regularly.

Onward!

“Ring the bells (ring the bells) that still can ring Forget your perfect offering There is a crack in everything (there is a crack in everything) That's how the light gets in.” -Leonard Cohen Dx 4/10/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- (FISH) Surgery 5/7/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 5/23/2018 Multi-catheter: Breast Hormonal Therapy 6/12/2018 Femara (letrozole) Surgery
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Mar 16, 2019 05:41PM wanderweg wrote:

moth - I was dictating that on my ipad and didn't go back and spell check. My ipad and phone both have a deep aversion to the word mastectomy! As do I. ;-)

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 29, 2019 04:04PM - edited Mar 29, 2019 04:38PM by Caitpow88

hi ladies! I can use as much advice as I can get! I was diagnosed October 2018 with ER + IDC, 4/14 positive nodes. Er on core biopsy was 30% and then decreased to 5% when retested. Ki 99% ! I have done AC and have completed #8 of abraxane (I had an allergic reaction to taxol). I am 30 now and have a 2 year old son.. I have had a lot of issues and really just want to make sure I am doing everything I need to do!

Dx 10/2018, IDC, Right, 2cm, Stage IIIA, Grade 3, 4/14 nodes, ER+/PR-, HER2- Surgery 10/15/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 11/5/2018 AC + T (Taxol)
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Mar 29, 2019 07:29PM ruthbru wrote:

I sounds like you are following your doctor's treatment recommendations, which is the smartest thing to do. It might not be a bad idea to have them test the ER one more time, just so they have a better handle on the percent. I was only 'mildly positive' (11-25%......I don't think tests were as precise then as now) but was recommended to take an anti-hormonal for 5 years; so you will probably want to ask about that. Best of luck!!

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Mar 29, 2019 11:58PM Murfy wrote:

Cait, it sounds like your tumor tissue might be heterogeneous for ER with different levels of ER in different parts of the tumor. Your Ki looks high. What was your PR level?


Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/13/2017 Mastectomy: Left Chemotherapy 1/12/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/31/2018 Aromasin (exemestane)
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Mar 30, 2019 09:50AM Caitpow88 wrote:

My PR was 0 both times! I had a lumpectomy but I am currently waiting on biopsy results of a bead sized lump that was about 3 fingers above my scar :( I am devastated.

Dx 10/2018, IDC, Right, 2cm, Stage IIIA, Grade 3, 4/14 nodes, ER+/PR-, HER2- Surgery 10/15/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 11/5/2018 AC + T (Taxol)
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Apr 14, 2019 09:35PM rrshannon wrote:

Cait hope you received your biopsy results and are doing good.

I have my bilateral mastectomy and they will be testing some lymph nodes tomorrow and will be anxiously waiting for the final biopsy results. I always hate the waiting game.


BRCA Negative. Dx 7/2/2003, ILC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 7/11/2003 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/23/2003 AC Radiation Therapy 10/30/2003 Dx 12/11/2018, IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 1/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/15/2019 Lymph node removal: Right; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right) Hormonal Therapy 5/10/2019 Femara (letrozole) Surgery 6/17/2019 Reconstruction (right): Tissue expander placement
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May 4, 2019 11:45AM - edited May 4, 2019 11:46AM by She38

I just finished reading through everyone's posts. I wanted to share my experience and seek some advice on the hormone treatment.

I am 39 years old, premenopausal. IDC with LVI and micropapillary features. Stage 2B Er90% and Pr<3% Grade3. My oncotype score was 52 and Negative PR score of 3.3 out of 10 and Positive ER score of 11.0 out of 12.5. I had single mastectomy followed by AC/T chemotherapy. My MO is giving me a month to recover from chemo before putting me on hormone therapy which will be any day now. He is suggesting Tamoxifen and Zolodex injections to supress my ovaries. I went for a bone scan and results found that I was -2.6 which suggests osteoporosis. My concern is with the Zolodex which I was told will lower my bone density further. I think I am leaning towards the Tamoxifen alone. What are your thoughts? Any other premenopausal women willing to share their experience?

The AIs are for postmenopausal women. Not sure if anyone has found any research specifically for single receptor premenopausal. I have found very little.

Dx 7/2018, IDC, Left, 2cm, Stage IIB, Grade 3, 0/12 nodes, ER+/PR-, HER2- Surgery 9/11/2018 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Chemotherapy 11/4/2018 AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2019 12:18PM Lisey wrote:

She, if they suppress you're ovaries, they usually put you on an AI, not Tamox.  I'm still on Tamox, it's a good pill for me and just had a hysterectomy, but fought to keep my ovaries, so I could stay on Tamox. :) 

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2019 01:16PM moth wrote:

I think regardless of what you decide for your hormone therapy, you might want to consult an endocrinologist about treating the osteoporosis. I started on Prolia but there are other options. Some of them appear also have the added benefit of reducing risk of bone mets... The endocrinologist I met with has experience specific to treating osteoporosis and osteopenia in breast cancer patients and she was more knowledgeable about the options and how to treat this than either my MO or GP.

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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May 4, 2019 02:59PM ruthbru wrote:

A friend of mine who already had osteoporosis made sure an endocrinologist was on her team from the start. Even though she was post-menopausal, she took Tamoxifen on his recommendation. I believe it actually builds bones.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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May 4, 2019 10:22PM - edited May 4, 2019 10:25PM by Meow13

She38, you know being pr negative, AI drugs are roughly twice as effective as tamoxifen. It really is maddening that we don't know how effective meds are at cancer prevention. Not sure your case will respond to tamoxifen and if you do take it make sure they monitor you for possible endocrine cancers. My SIL was premenopausal and tamoxifen cause her to get uterine cancer, so mad at her doctor. He failed to recognize her condition since it is so rare. By the time she had the biopsy and was diagnosed she died roughly 5 months later.

https://www.cancernetwork.com/articles/anastrozole...

Another study dated 2014 supports this finding as well.

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May 4, 2019 10:57PM - edited May 4, 2019 10:59PM by Kjchico

Hi, all. Was diagnosed with stage 1 IDC on April 15th. Will do a lumpectomy. I have yet met with my RO and my MO. Just with the BS. Having a MRI in 10 days. My tumor is only 8mm however is grade 3 poorly differentiated.

My receptors are E+ 75% staining, weak intensity, PR negative, HER2 negative. My Ki67 staining, which concerns me is 93%- strong intensity, I don't know node involvement as yet. The biopsy report said I was “near triple negative", but my BS brushed that off. Said I was E+ and that was what counted. I'm confused whether my tumor is considered aggressive because of the high grade, and also the very high Ki67. Guess I'll find out answers soon. I'm 66 years old. I am against doing chemo. Just radation.


Dx 4/15/2019, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- (IHC) Dx 6/14/2019, DCIS, Left, Stage 0, Grade 2 Surgery 6/14/2019 Lumpectomy: Left Chemotherapy 7/30/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/28/2019
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May 4, 2019 11:10PM Meow13 wrote:

kjchico, did they recommend oncodx test? It might help you decide on your treatment. I had 2 small separate 1cm tumors, one ilc one idc, no nodes, 95% er+ and pr negative her2 negative. My grade was 2 on ilc and 1 on idc, both mitotic scores of 1. No ki67 mentioned, my oncologist doesn't regard it as useful. My oncodx was 34 suggesting chemo. Well I chose AI drugs made it 4 years on them. I am on year 8 no cancer. I had mastectomy and DIEP reconstruction.

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May 5, 2019 01:23AM Kjchico wrote:

I haven’t seen the MO yet, my appt.is not till May 22nd, so I don’t know if they will do the test. Maybe I shouldn’t worry about the Ki67 score quite yet. Thank you for your reply!

Dx 4/15/2019, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- (IHC) Dx 6/14/2019, DCIS, Left, Stage 0, Grade 2 Surgery 6/14/2019 Lumpectomy: Left Chemotherapy 7/30/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/28/2019
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May 5, 2019 07:40AM DebAL wrote:

kjchico, I'm sorry you find yourself here. We are in a unique group as single receptor positive. MRI will also clarify if there are other areas of concern in both breasts. Oncotype will give you information for chemo benefit. Most of us that are pr neg tend to fall in intermediate or high oncotype score. Small tumors can still have aggressive features. AI drugs will be an option for you. There are many decisions to make along the way. We are here to support you. The waiting is difficult. Hang in there.

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/11/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/12/2018 Mastectomy: Left, Right Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/13/2018 Arimidex (anastrozole) Surgery 8/8/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/19/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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May 5, 2019 11:19AM Kjchico wrote:

Thank you so much! Just impatient, I guess. The first thing I will do tomorrow (Monday) will be to call the imaging center and get my MRI moved up - if possible. This will give all an opportunity to see the report and not have such as small window between the RO and the MRI. Maybe I have no cause for upset, but with a Ki67 score of 93% and a grade 3 tumor, although in stage 1, I’m not sure. I guess for me, patience is a virtue.

Dx 4/15/2019, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- (IHC) Dx 6/14/2019, DCIS, Left, Stage 0, Grade 2 Surgery 6/14/2019 Lumpectomy: Left Chemotherapy 7/30/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/28/2019
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Jun 23, 2019 02:41PM Meow13 wrote:

Bumping, I notice there are newer threads for er+ pr- her2- cancers. This thread had much discussion on taking AI drugs several people were strongly er+ but no pr receptors.

I think there is a group in the UK and in Australia looking at the behavior of that specific combination.

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Jun 23, 2019 03:31PM Fairydragonfly wrote:

Thank you for bumping this thread Meow13!

DX at age 43. Weak staining ER, Oncotype score 50, BRCA1 mutation. Lost both parents to cancer in 2018 Dx 4/17/2019, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR-, HER2- (IHC) Surgery 5/1/2019 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 23, 2019 04:39PM PatsyKB wrote:

Meow13, can you point me in the direction of newer threads discussing er+ pr- her2-? As you know, I'm STRONGLY ER+ and 0%PR-...the more I know, the better!

“Ring the bells (ring the bells) that still can ring Forget your perfect offering There is a crack in everything (there is a crack in everything) That's how the light gets in.” -Leonard Cohen Dx 4/10/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- (FISH) Surgery 5/7/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 5/23/2018 Multi-catheter: Breast Hormonal Therapy 6/12/2018 Femara (letrozole) Surgery
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Jun 23, 2019 07:18PM - edited Jun 23, 2019 07:20PM by Meow13

I don't see it, it could be under idc. I'll search.

https://community.breastcancer.org/forum/96/topics...


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Jun 24, 2019 10:36AM PatsyKB wrote:

Thanks, Meow13!


“Ring the bells (ring the bells) that still can ring Forget your perfect offering There is a crack in everything (there is a crack in everything) That's how the light gets in.” -Leonard Cohen Dx 4/10/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- (FISH) Surgery 5/7/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 5/23/2018 Multi-catheter: Breast Hormonal Therapy 6/12/2018 Femara (letrozole) Surgery

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