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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 05:28AM

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 8/31/2017 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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Dec 6, 2017 04:35PM ruthbru wrote:

Most people who are ER positive are also PR positive. The estrogen is the most important part, they don't really know how the PR (or lack thereof) plays into things.

"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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Dec 6, 2017 08:58PM Meow13 wrote:

I saw in BIG print on my chart pr less than 1%. It seems to concern my mo. Er was 95% though.

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Dec 7, 2017 03:31AM moth wrote:

If I'm understanding my report correctly, I'm here too.

I've only had the core biopsy done right now. Do they normally retest the tumor after surgery? And does the OncotypeDX test give more nuanced info about this too or is that something else?

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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Dec 7, 2017 05:52PM Meow13 wrote:

The oncodx test results to me were disappointing, all I got was a number and er percentage. For 4k you think you would see more details of how they determined your number.

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Dec 21, 2017 02:58AM - edited Dec 21, 2017 02:59AM by StubbornDog

bravepoint - my pathology came back 2-5% so we are similar! (My initial biopsy was 10% ER+)

moth -- yes they look at the tumor after surgery in better detail than in the biopsy. I am stage 1 but given my cell characteristics (grade 3) and hormone receptor status they are not doing Oncotype testing. The point of Oncotype is to determine if you are a candidate for chemotherapy, and they already know I am. Hope your surgery went smoothly!

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Dec 21, 2017 03:49AM bravepoint wrote:

StubbornDog - Just curious are you taking an AI or Tamoxifen?

Gail Radiation Therapy 4/17/2016 Whole-breast: Breast, Lymph nodes, Chest wall Dx 8/8/2016, IDC, Right, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR-, HER2- Surgery 8/29/2016 Chemotherapy 10/7/2016 Chemotherapy AC + T (Taxol)
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Dec 21, 2017 10:06AM Meow13 wrote:

AI drugs proving to be much more effective than tamoxifen for er+ pr- cancer.

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Dec 21, 2017 10:31AM moth wrote:

Meow13, do you have a source about the AI v. tamoxifen?

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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Dec 21, 2017 01:41PM - edited Dec 21, 2017 01:50PM by Meow13

yes but it is old but my oncologist might have a more up to date study

http://www.cancernetwork.com/articles/anastrozole-...

I see my oncologist on the 28th I will ask. He told me I am better protected with AI but I'll ask for a source.



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Dec 21, 2017 03:56PM moth wrote:

Thank you, Meow13 :)
I'm pre-menopausal so maybe that changes things as that study specifically says post....

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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Dec 28, 2017 07:51AM SueRobbo wrote:

I am concerned also. Aged 66, diagnosed 11/12/2017 after mammogram, ultrasound and biopsy. Invasive Ductal Carcinoma. Grade 3. Single hormone receptor positive, ER 8/8, PGR 0/8. HER2-. Had wire guided WLE and sentinel node operation 21st December and awaiting review and treatment options. Is single receptor status an issue?

Dx 12/4/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/21/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 2/1/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Dec 28, 2017 09:17AM Meow13 wrote:

I really don't think it is that much of an issue. Studies show tamoxifen may not be as effective as it is for both er and pr positive but AI drugs are effective for er+ and pr-.

You can get a mammoprint or oncodx test to find out more. I was pr- less than 1% but er + 95%. They wanted me to do chemo and AI drugs. Since my grade was between 1 and 2, I chose no chemo and did AI for 4 years. My oncodx score was 34.

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Feb 7, 2018 12:17PM StubbornDog wrote:

@bravepoint Sorry about the very, very late response. I did not see your question! I don't come here too often. No, I am not taking any hormone blockers. My oncologist said we would discuss that later, but at the moment, with final pathology at only 2-5% ER+, she is treating me like a triple negative and isn't sure she'll ever put me on them.

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Feb 7, 2018 02:12PM Meow13 wrote:

Moth, I just found a recent article on what the absence of the progesterone receptor can mean and how to treat it.

It confirms AI drugs more appropriate for er+ only, it had some stats mentioned AI drugs nearly the same effectiveness in er and pr positive verses er positive only. Tamoxifen does not work nearly as well for er positive only.

Now I can't find the link I think it was on cancernetwork.com

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Feb 15, 2018 05:34AM krisckris wrote:

Seemaryrock, last year I was searching for others with single hormone receptor positive BC as well with no results until I saw your post today and a whole slew of other women who responded to your original post. You're not alone and it's comforting to read other women's posts about their journeys. No BC is the same, nor the treatment, but I hope my history helps you a bit with your journey. I had to also do fertility preservation in case the chemo makes me sterile. I have a high chance of reoccurence because my onctype was so high (57) even though my margins were clean and my lymph nodes were negative. Doctor wanted to play it safe with chemo and 10 years of tamoxifen. I have to be on tamoxifen for 1 year before she will let me stop and do IVF to implant the embryos I have stored. This is the new normal of life. Getting used to menopause symptoms at the age of 29 (now I am 30) and having no feeling in my chest from the bilateral mastectomy. I am blessed to be alive and have a wonderful team of doctors, but this is tough. I'll keep you and all the others in my thoughts and prayers.

04/07/17 OBGYN found lump in right breast, thought to be fibroadenoma, but recommended a biopsy to be sure.
06/15/17 Core Needle Biopsy, Right
06/22/17 Dx IDC at 29 y/o, Right, 2cm, Stage IIA, Luminal B
07/24/17 Sentinel Lymph Node Dissection, Right underarm, 7 nodes (all negative for involvement)
08/07/17 Nipple sparing bilateral mastectomy, Left side fine (preventative removal), right was Grade 3, 2.1cm tumor, and clean margins; Tissue expander placement (left & right)
09/01/2017 ER 15%+ PR- HER2-, Ki67 80-90%, Oncotype 57
10/16/2017 Chemotherapy starts (4 rounds of AC and 12 rounds of Taxol) Lupron shots once a month.
02/26/2018 Last Taxol chemo and 10 years of tamoxifen will begin
04/20/2018 Exchange surgery (removal of tissue expanders for gummy bear implants and fat grafting)



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Feb 15, 2018 09:25AM Moderators wrote:

krisckris, thanks for sharing your experience here with us in the community. It's really helpful to hear what others are going through.

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Feb 24, 2018 07:24AM SusanGA wrote:

I am so glad to find this thread. It makes me feel less alone. My tumor was small 7mm with clear nodes and good margins. I had a unilateral mastectomy. It was 98% ER+ PR- HER2- My Oncotype was 23 and the ONC left it up to me on chemo. I did a Mamaprint which came back high risk so I did 4rounds of Cytoxan and Taxotere. I was 70 at diagnosis and I am now 71. I have been on Arimidex for 3months. I had a Total hysterectomy with oopherectomy in 1995 and I had been on Estrogen replacement until my diagnoses. I have read that this type of tumor is aggressive but I take hope in the fact that there seems to be many that have done just fine. I will keep looking to see if anyone discovers more information

Dx 4/14/2017, IDC, Right, <1cm, Grade 2, ER+/PR-, HER2- Surgery 6/13/2017 Lymph node removal: Sentinel; Mastectomy: Right Surgery 6/14/2017 Mastectomy Chemotherapy 8/24/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Feb 24, 2018 07:39AM ruthbru wrote:

I am celebrating my 11 years out anniversary on a beach!

"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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Feb 24, 2018 08:00AM Legomaster225 wrote:

Beautiful Ruthbru! Congrats an enjoy the sunshine!!!

Diagnosed at 50. Currently 52. Oncotype score 39. One node positive at diagnosis negative after preadjuvent chemo. Bilateral cancer discovered at BMX. Left breast was supposed to be prophylactic. :-( Dx 12/3/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 1/19/2017 AC + T (Taxol) Dx 6/22/2017, IDC, Left, <1cm, Stage IB, Grade 1, 0/0 nodes, ER+/PR+, HER2- Dx 6/22/2017, DCIS, Left, <1cm, Stage 0, Grade 1 Surgery 6/22/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 8/21/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/17/2017
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Feb 24, 2018 08:09AM - edited Feb 24, 2018 08:09AM by KathyA13

Dec 26, I was diagnosed with Lobular Invasive Carcinoma in right breast. ER 97% +, PR -, Her -, Oncotype DX score was 21, no chemo. Prescribed Letrozole daily. Bilateral mastectomy Feb 15, 2018. Post surgical biopsy found small cancer spot in left breast. Lymph node positive under both arms. Appointment next week with my Oncologist to discuss radiation. Sitting at home on the couch right now, wearing my lovely drain pouch :)

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Mar 17, 2018 01:27AM - edited Mar 17, 2018 01:31AM by Lightlee

I was diagnosed in June 2017 as TNBC, IDC, left sided breast cancer. Biopsy reported my hormone receptor status as ER 0, PR 0 and HER- Also had sentinel node biopsy which was negative. Tumor was 2.5cm. An Oncotype test was not done. My original biopsy was retested and showed my tumor as 2% positive.

Did AC chemo first followed by ten weekly rounds of Taxol. On fifth Taxol we added Carboplatin

Had surgery - lumpectomy- in December (month early) because tumor was growing. Final pathology reflected my tumor as 60% ER positive. No change in tumor size. I had 95% residual disease.Did hypofractioned radiation therapy, 20'fractions. Now taking Arimidex for five years.

We do not have a common cancer subtype. Can't find much information about long term prognosis.

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May 14, 2018 03:25PM farmerjo wrote:

ER was high, PR was around 5% - Oncotype had my PR as negative. When my surgeon saw the low PR, he said 'that may be difficult to treat'.

It's my understanding an AI is ineffective on negative ER and/or PR. So, essentially, I feel like my AI is 'half' working.

ATM gene mutation, Lynch Syndrome, On HRT for 17 years at dx. Oncotype 19, MammaPrint high-risk. Ki67 29.1% ER 90% PR 5% False-negative sentinel node biopsy Dx 1/26/2015, IDC, Left, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/13/2015, DCIS, Left, <1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 2/13/2015 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 4/13/2015 Femara (letrozole) Dx 5/31/2016, IDC, Left, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2- Surgery 6/17/2016 Lymph node removal: Left Chemotherapy 8/1/2016 AC + T (Taxol) Hormonal Therapy 12/21/2016 Aromasin (exemestane) Surgery 1/18/2017 Prophylactic ovary removal
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May 14, 2018 03:33PM Egads007 wrote:

I was triple neg until final path, 15% ER positive only. Menopause couldn be confirmed so I was given tamox. Switching up to AL in December. I guess that’s my 5 year pin.

Happy

"I base all my fashion choices on what doesn't itch" (Gilda Radner) Chemotherapy 3/20/2013 Doxil (doxorubicin), Taxol (paclitaxel) Surgery 8/23/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 11/1/2013 Whole-breast: Breast, Lymph nodes Dx IDC, 4cm, Stage IIB, 0/2 nodes, ER+/PR- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 14, 2018 03:40PM PatsyKB wrote:

Everyone - glad (relieved) to find this group. Evidently we’re in a 15% subtype. I don’t mind being special, but this isn’t the kind of special I like.

Question: how many of you had the oncotype test done? Do you consider it an important tool? My gut feeling is that I want to strongly request the test.

I was diagnosed a month ago, on April 10, with IDC. ER+ 99%, PR- 0%, HER2- . Lumpectomy a week ago with sentinel node biopsy. Clean nodes and margins, so that was good news.

I have my post op surgeon meeting tomorrow plus I’m meeting a radiation oncologist and a medical oncologist.

Any wisdom or advice would be appreciated.

“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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May 15, 2018 02:11AM ruthbru wrote:

Being estrogen positive is the most important thing. They really don't know how the PR even fits into it. The good things are that anti-hormonals will work well for us but we don't have to be so torn about staying on them for more than 5 years or not. Since I was only mildly estrogen positive, I was happy to be on Arimidex for 5 years, but had no qualms about being done at that point. Another good thing is that, although their risk of recurrence is higher during the first 5 years, after that triple negative's risk of recurrence drops back almost to the point of those who have never had cancer (where as ER/PR positive remains higher)......so after, 5 years I think that puts us at an advantage too.

Patsy, the oncotype is important if you are considering chemo (and not sure if you need it or not.....I needed it). So, unless chemo is their recommendation, it really wouldn't serve any purpose.


"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 15, 2018 02:53AM PatsyKB wrote:

Thanks so much for this, ruthbru. Your explanation and experience as well as the reminder that oncotype is relevant ONLY if chemo is in consideration are much appreciated. Good timing, too - we leave for my onco appointments in a few hours. Hoping to know a lot more about where I'm headed by the end of the day.

“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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May 15, 2018 03:06AM Okkate75 wrote:

All of my docs have stressed that they are only starting to figure out what makes PR- a different kind of cancer, and that hormonal therapy will certainly help in our cases. Do I face higher recurrence risks? Yes--that's what my Oncotype showed, and that's why we did chemo. Hopefully research on TNBC will help all of us going forward.

Dx 11/17/2017, IDC, Left, <1cm, ER+/PR-, HER2- Surgery 12/6/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/5/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/15/2018 Hormonal Therapy 5/24/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 15, 2018 05:18AM ruthbru wrote:

Let us know how it goes, Patsy.

"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 15, 2018 07:32AM Hopeful82014 wrote:

I'm not sure how much benefit hormone receptor positives will derive from research into TNBC, other than in a most general way. Hormone receptor positives, (whether PR+ or -) are luminal breast cancers, whereas TNBC is basal - as a rule of thumb.

Dx IDC
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May 15, 2018 08:07AM moth wrote:

Some of us are only marginally ER+ & bordering on TNBC

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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