Topic: Looking for Her2 Positive survivor stories

Forum: HER2+ (Positive) Breast Cancer — Testing, treatment, side effects, and more.

Posted on: Nov 3, 2014 09:47AM

Posted on: Nov 3, 2014 09:47AM

Lovemyboysandlabs wrote:

Hello, I was dx in February with Her2+ BC. I went through the chemo, the mastectomy and now in the midst of radiation. I will finish that in December and will be on the Herceptin through March. 

I, like so many BC survivors, have a constant fear of metastisis. I can't shake it. I think what I need is to read stories of those with my type of BC that have survived for years with no recurrence. Please share your stories with those of us that are still in treatment or just finishing that are scared.


Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/3/2014 Herceptin (trastuzumab) Chemotherapy 3/3/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/15/2014 Breast, Lymph nodes
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Jan 26, 2022 09:23AM margun wrote:

I had herceptin. I have no success registering it in my profile.

According to the table, after 5 years the recurrence is only 2 percent for early stagers

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Jan 26, 2022 10:32AM wrote:

I'm not HER2+ but I saw this discussion in the Active List and thought that I'd pop in and add this graph. It's important to note that this wasn't a large study but it does address the recent questions in terms of risk of recurrence after 5 years for HER2+ patients.


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Jan 26, 2022 10:55AM mcbaker wrote:

Yes, small sample, and no breakdown of what stage de novo.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR-, HER2+ Dx 11/16/2018, IDC, Right, <1, Stage IA, Grade 1, ER-/PR-, HER2+, IHC Surgery 11/16/2018 Lymph node removal; Mastectomy; Mastectomy (Right); Reconstruction (Right): Tissue Expander Targeted Therapy 12/19/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Chemotherapy 12/24/2018 Taxol (paclitaxel) Targeted Therapy 12/28/2018 Herceptin (trastuzumab) Surgery 6/28/2019 Reconstruction (Right): Fat grafting, Saline implant Chemotherapy
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Jan 26, 2022 12:47PM specialk wrote:

Just wanted to add that the general consensus is that Her2+ driven recurrence usually happens in the first 2-3 years post treatment, if those with recurrence are years out it is possibly more likely to be driven by the hormonal aspect. I think this study has good generalized info, but there are several things to note. This study was looking at patients from 2005-2013. It appears that in the text between Table 4 and Fig 1, 92% of the Her2+ patients did not receive adjuvent Herceptin. Since this study was looking at a timeframe earlier than 2013, Perjeta would not have been prescribed yet and neoadjuvent systemic treatment was unlikely. Kadcyla for residual disease in larger tumors, node positives, or high risk patients would certainly not have been given. The unfortunate thing about studies is that they are often looking at data collected earlier than the use of current treatment regimens that have now become standard of care, so there is some degree of lag. As is pointed out at the end of the discussion in the study, if you are having any treatment that is different from what was studied it makes it a bit harder to apply these stats to those being treated now or in the recent past. In a subtype like Her2+ disease, that has a rapidly changing treatment environment, it can be a challenge to interpret and apply info!

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, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Jan 26, 2022 01:34PM - edited Jan 26, 2022 01:46PM by deniseml

Thank-you Raliegh girl for your post. it is up-lifting and encouraging to hear your story since I, too had IDC, 2 large tumors - 6 cm. combined, many, many lymph nodes involved, ER- HER2+, same chemo and targeted therapy with pCR. I did have inflammatory BC also. I am 18 months out of initial diagnosis and 7 months out from end of all treatment.

I thought I had read something about highest risk for our scenario was first 5 years, first 2 being the highest incidents of recurrence. I try not to dwell on risks .

wishing all the best of luck and happiest life has to offer!

Dx 8/3/2020, IDC/IBC, Left, 3cm, Stage IIIC, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 1/15/2021 Lymph node removal; Mastectomy; Mastectomy (Left) Immunotherapy Radiation Therapy Whole breast, Radiation boost: Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 10, 2022 02:28AM spudsie wrote:

HER2 3C on diagnosis Aug 2015, (12/36 nodes positive and removed) Double Mastectomy in Oct 2015. This was followed with Chemo + Herceptin. Didn't go through with radiotherapy. Implants in at the mastectomy. Had them out 6 months later. I hated them. It's been 6 1/2 years now. I honestly don't even really think about it until a mate gets Breast cancer and wants to talk about their options.

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Mar 10, 2022 01:10PM moth wrote:

"HER2-positive breast cancer progressively turned from the most feared to the most curable subtype.

Currently, more than 9 out of 10 patients with HER2-positive breast cancer who are treated with chemotherapy and HER2-blockade are free from recurrence 6 years after surgery.3 The treatment and outcomes of HER2-positive breast cancer have improved so much that the research focus has gradually shifted from treatment escalation toward a search for safe de-escalation opportunities."

More Tolerable Cures for Patients With Early-Stage HER2-Positive Breast Cancer: Halfway to Precision March 2022

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Hormonal Therapy 12/15/2020 Femara (letrozole) Radiation Therapy 3/2/2021 External Local Metastases 3/2/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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Mar 16, 2022 04:31PM melbo wrote:

thanks for sharing Moth! That is very heartening news, especially for hormone negative folks. Now I just wish they could make such great progress for triple negatove

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; Lumpectomy (Left); Lymph node removal; Reconstruction (Left); Reconstruction (Right) Radiation Therapy 1/31/2021 Whole breast: Breast, Lymph nodes
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Jul 6, 2022 11:37AM - edited Jul 6, 2022 11:41AM by jo6359

I am her2+and hormone negative. I went through tchp plus double mastectomy and 27 radiation treatments in 2018. I am four and a half years out from my initial diagnosis. I am doing great. I have a little neuropathy that I developed between chemo treatment four and five. These discussion forums kept me sane during that first year. There are a lot of ups and downs with treatment. Chemo knocks you on your ass. I work in home health and I had flexibility with my schedule which allowed me to continue to work throughout treatment. There were days it took everything I had just to put one foot in front of the other not just from the physiological changes occurring with my body but also that thing called chemo fog. My mental status was definitely out of kilter.Moth is always on top of things when it comes to breast cancer research. Moth thanks for always being so generous with your time. Hang in there girl. To the rest of you there is a light at the end of the tunnel. But damn it there are a lot of detours to reach the end of the road. Even though I'm doing great I can still remember how scary and difficult the whole process is.

Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+, FISHISHCISH Dx 1/29/2018, DCIS, Right, Stage 0 Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/16/2018 Herceptin (trastuzumab)
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Aug 22, 2022 08:12PM kimm992 wrote:

I'm still here after being diagnosed in 2015! Happy and healthy and loving life!

Dx 10/14/2015, IDC, Right, 1cm, Grade 3, ER-/PR-, HER2+, ISH Chemotherapy 11/3/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Targeted Therapy 1/6/2016 Herceptin (trastuzumab) Chemotherapy 1/7/2016 Taxotere (docetaxel) Surgery 3/24/2016 Mastectomy; Mastectomy (Right) Radiation Therapy 4/30/2016 Lymph nodes, Chest wall

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