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Topic: ER-/PR-/Her2+ Rare??

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Aug 9, 2020 09:47AM

etnasgrl wrote:

I am not new to the breast cancer world, by any stretch.
My mom passed away from metastatic breast cancer in 2000 and in 2015, I was diagnosed with Stage 1, node negative, IDC ER+/PR+/Her2- in the right breast. Then, in February of this year, I was diagnosed with Stage 1, node negative, IDC ER-/PR-/Her2+ in the left breast.
My oncologist has told me that this type is pretty rare. I have tried researching hormone negative, Her2+ breast cancer, but there is not much info out there. I am just curious to see if there are others on here with this same diagnosis and if so, how are you doing?

Diagnosed at 41. Diagnosed 2nd time at 45. Dx 11/5/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/9/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/12/2016 Whole-breast: Breast Hormonal Therapy 2/17/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/13/2020, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/23/2020 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/18/2020 Herceptin (trastuzumab) Surgery 8/20/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 9, 2020 10:26AM mtspacekace wrote:

I have hormone negative HER2+...I won’t know how the chemo is working until I’m done with all 6 infusions...but I think I can feel the tumors getting smaller.

Diagnosed at 38. Dog mom. Wife. Rancher turned warrior, currently busy kicking cancers ass. Dx 6/3/2020, IDC, Left, 2cm, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (FISH) Dx 6/3/2020, IDC, Left, 2cm, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/7/2020 Perjeta (pertuzumab) Chemotherapy 7/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/7/2020 Herceptin (trastuzumab) Surgery 12/16/2020 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 9, 2020 11:29AM Melbo wrote:

I was just diagnosed with hormone negative, HER2+ IDC in July at age 42. I had my first chemo treatment on Friday. I don't have any statistics or anything about how rare it is, but I have noticed skimming here that hormone positive does seem to be more common. My oncologist believes that if I respond well to treatment I should have less than a 10% chance of recurrence, which is the more important statistic to me than 5 year survival rate (which is estimated to be well into the 96% range.)

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 1/31/2021 Whole-breast: Breast, Lymph nodes
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Aug 9, 2020 11:38AM MinusTwo wrote:

There's a ton of us who are hormone negative and HER2+. I'm not sure why your doc considers this rare. Try searching the HER2 threads on this site. Most of of us are considered lucky because there are so many new treatments out there for HER2. I'm more than 5 years past my last treatments and feeling great. I'm not happy about the lingering neuropathy, but I walk 4 miles a day and do pretty much whatever I want.

My original diagnosis was for DCIS - hormone negative. They don't check for HER2 with DCIS, but I did have a BMX. Two years later I found a lump by my collar bone. Turned out to be IDC and HER2+ I had neo-adjuvant chemo TCHP, ALND surgery, more chemo - AC this time, radiation and herceptin for the rest of a year.

Looks like you have a mastectomy coming up. Good luck. Will you have radiation?

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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Aug 9, 2020 11:47AM MinusTwo wrote:

Here's the link to HER2+ topic. There are over 2500 threads.

https://community.breastcancer.org/forum/80


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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Aug 9, 2020 12:08PM DogMomRunner wrote:

I just finished my year of Herceptin. My mammogram and ultrasound was clear except for a very small remaining bit of a seroma from my lumpectomy. I know that there seems to be more HR+ and HR+/HER-2+ people who post here.

You ain't run far enough to say My legs have failed You ain't gone far enough You ain't worked hard enough You ain't run far enough to say It ain't gonna get any better. Nathaniel Rateliff Dx 4/24/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/8 nodes, ER-/PR-, HER2+ (FISH) Surgery 5/17/2019 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 6/6/2019 Herceptin (trastuzumab) Chemotherapy 6/6/2019 Taxol (paclitaxel) Radiation Therapy 9/22/2019 Whole-breast: Breast
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Aug 9, 2020 02:57PM SpecialK wrote:

Based on what I have read and observed from reading studies that break participating patients down into categories based on hormonal receptor and Her2 status, Her2+ patients make up about 15-20% of diagnosed breast cancers. I believe ER+/PR+ patients make up about 60% of Her2+ patients, leaving approximately 40% with negative hormone receptors. So, if one to two out of 10 diagnosed are Her2+, and 40% of those are hormone receptor negative - looks like somewhat less than 1 out of 10. Triple negative breast cancer seems to be slightly more prevalent than cases of ER-/PR-/Her2+ at 10-15% of all breast cancer diagnosed.

Here is a link to a thread specifically for those who are ER-/PR-/Her2+

https://community.breastcancer.org/forum/80/topics/767013?page=58#idx_1729


BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Aug 9, 2020 03:19PM UnrealTarHeel wrote:

Hi, so sorry you have to be back here, but you can see that you have company in the ER-/RE-/HER2+ world. I was diagnosed at the every end of February. Finished 12 weeks of weekly Taxol last week -- not fun, but more manageable than I had feared. 4 weeks of radiation starting at the end of this month; Herceptin every three weeks through May. I take a lot of inspiration from the many encouraging stories on these boards and in the HER2+ thread linked above.

Dx 2/28/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 3/26/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/11/2020 Taxol (paclitaxel) Targeted Therapy 5/12/2020 Herceptin (trastuzumab) Radiation Therapy 8/24/2020
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Aug 9, 2020 04:05PM MinusTwo wrote:

I second the link that Special K posted. Lots of good feedback & info.

Also I recommend you join the current chemo thread - like Chemo July or Chemo Club Summer 2020. It really helped to go through chemo with others at the same time, even if our cocktails were different.

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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Aug 9, 2020 07:49PM DogMomRunner wrote:

hi UnrealTarHeel- Congrats on making it through the 12 weeks! I hope you are doing ok. I did not really like radiation therapy, I had to hold my breath and was scared that I would mess it up somehow.

You ain't run far enough to say My legs have failed You ain't gone far enough You ain't worked hard enough You ain't run far enough to say It ain't gonna get any better. Nathaniel Rateliff Dx 4/24/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/8 nodes, ER-/PR-, HER2+ (FISH) Surgery 5/17/2019 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 6/6/2019 Herceptin (trastuzumab) Chemotherapy 6/6/2019 Taxol (paclitaxel) Radiation Therapy 9/22/2019 Whole-breast: Breast
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Aug 11, 2020 12:58PM December11 wrote:

I was diagnosed with hormone negative, her2 positive in December 2019. Finished 6 cycles of TCHP in April. Had mastectomy in May and a pathological complete response to the chemo. Started radiation in July. Will finish radiation in August and finish the Herceptin in December.

I am doing pretty good. The effects of chemo seem to be gone. My chest is red from the radiation.

Dx 12/11/2019, IDC, Left, 1cm, Stage IIA, Grade 3, ER-/PR-, HER2+ (FISH) Chemotherapy 1/3/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 1/3/2020 Perjeta (pertuzumab) Targeted Therapy 1/3/2020 Herceptin (trastuzumab) Surgery 5/19/2020 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Radiation Therapy 7/13/2020
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Aug 16, 2020 09:50AM Joaniebt wrote:

Hi, I have ILC, ER-/PR-, HER2+. I have also been trying to find more info but it seems to be very rare. I was dx on March 16, 2020. I immediately started chemo. I finish this week and then will have a double mastectomy on Sept 18th. Looking to see if anyone else had chemo first, then surgery. If so, did you require chemo again after surgery??

Joan Thiesen
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Aug 16, 2020 01:31PM MinusTwo wrote:

Joanie - the protocol for HER2+ is pretty much always chemo first. But I can't speak to what the treatment differences might be with ILC.

My recurrence was IDC - ER/PR negative, HER2+ and one node positive. I did have TCHP chemo first but did not have a pCR (compete response where the tumor disappears). The remains were removed during surgery with good clean margin. However since I'd already had one micromet roaming around, yes I did have A/C chemo after surgery to knock out anything that might have slipped through the net. And then rads with Herceptin for the balance of a year.

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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Aug 16, 2020 01:40PM Beesy_The_Other_One wrote:

Joan, I've read that only 4 percent of breast cancers are hormone negative/HER2+, and ILC would be a smaller subset of that. With HER2+ cancers, the current standard of care is chemo first. In my case, I achieved a pCR, so no chemo was required after surgery, although the current standard of care if you're HER2+ and there is some residual cancer at the time of surgery, they give you Kadcyla, which I think of as a "smart bomb" chemo--the Herceptin (or Trastuzimab) takes chemo directly to the remaining cancer. This coming Thursday is the two year year anniversary of my diagnosis and at that point, the unknowns were the hardest part. I will finish up active treatment in November (Nerlynx).

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Aug 19, 2020 09:03AM December11 wrote:

Beesy, thank you for posting that statistic. I've looked for it on the internet but could not find it. 4% would be rare.

Dx 12/11/2019, IDC, Left, 1cm, Stage IIA, Grade 3, ER-/PR-, HER2+ (FISH) Chemotherapy 1/3/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 1/3/2020 Perjeta (pertuzumab) Targeted Therapy 1/3/2020 Herceptin (trastuzumab) Surgery 5/19/2020 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Radiation Therapy 7/13/2020
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Jun 10, 2021 08:07PM DutchieGirl wrote:

Here’s a pie graph -




We are rare group indeed!

Lori-Anne Dx 11/7/2018, IDC, Left, 1cm, Stage IIIA, ER-/PR-, HER2+ Surgery 1/13/2019 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 3/3/2019 AC + T (Taxol) Radiation Therapy 7/28/2019 Targeted Therapy Herceptin (trastuzumab)
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Jun 12, 2021 09:23PM lkc wrote:

Hi all. Just wanted you all to know. I have surpassed 16 yrs NED from a stage IIIC er/pr neg , her2 pos. BC with 12 pos. Extracapsulatednodes and no clear margins after my last surgery. I well and grateful every day. You can do it too

Linda K dx'd May 05 Stage IIIC erpr-, her pos, 12 pos nodes
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Jun 12, 2021 09:30PM Sassa wrote:

LOL - I guess it is old timers posting time.


I was diagnosed stage 1 IDC, ER/PR-, HER2+ in November 2006.

I had bilateral mastectomies (one was a simple to stay even because I was so over endowed it was uncomfortable being lopsided.

Treat was 4 AC followed by one year herceptin.

I have been in remission for thirteen years (time from last herceptin treatment).

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+

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