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Topic: Just diagnosed after 4 years NED

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Feb 13, 2020 04:33PM

etnasgrl wrote:

Hello ladies!

My first go round with breast cancer was in 2015. I had IDC ER+/PR+/Her2- in the right breast. I just learned today that I have a new primary in the left breast. This time, ER-/PR-/Her2+
Yes, I am shell socked right now. I always knew the cancer could come back, but coming back as such a new beast has thrown me for a loop. Obviously, this means chemo and Herceptin. My tumor is small, only 8mm. My surgical oncologist is going to a lumpectomy/sentinel node biopsy in 2 weeks and then move me on to chemo/Herceptin. Once it is all over, I plan on doing a double mastectomy with reconstruction.

I am very nervous about the chemo and Herceptin as I didn't have either one the first time around. Any advice? Tips?

Diagnosed at 41. 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, ER-/PR-, HER2+
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Feb 13, 2020 06:54PM Ingerp wrote:

Check out the Triple Positive thread. You can ignore the Tamoxifen/AI stuff but everyone there has done chemo (often Taxol) and Herceptin. There’s also a Weekly Taxol thread if that’s what’s recommended.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Feb 13, 2020 09:47PM - edited Feb 13, 2020 09:48PM by MinusTwo

Why not do the chemo first since you're HER2+? That's sort of standard & shrinks the tumor, in some cases it disappears.

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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Feb 13, 2020 09:53PM ElaineTherese wrote:

If I recall correctly, etnasgrl's tumor is on the small side. I did neoadjuvant (before surgery) chemo because my lump was big and shrinking it would give me more surgical options. (It did disappear, though surgery did remove a tiny pocket of DCIS.) It sounds like etnasgrl is ready for a BMX at this point. Still, one benefit of neoadjuvant chemo is that it allows you to make sure that your tumor is responding to the chemo regimen in question. So, that might be a reason to do chemo first.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Feb 14, 2020 05:26AM etnasgrl wrote:

My tumor is small, 8mm. My medical oncologist told me that normally, chemo is given first, but because mine is so small, he thinks we should get it out first and then move forward a few days later with chemo. The surgical oncologist agreed, given that the tumor was so small. She felt that was the best way to go.

At this point, I will have a lumpectomy with a sentinel node biopsy, just to get this thing OUT. Move forward with chemo/Herceptin and once done with that, move forward with a bilateral mastectomy

Diagnosed at 41. 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, ER-/PR-, HER2+
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Feb 14, 2020 06:49AM DogMomRunner wrote:

I had a small tumor and surgery was recommended first. If it had been closer to the 2cm then they would have recommended chemo first. But my BS was going with lumpectomy

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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Feb 14, 2020 08:19AM Ingerp wrote:

Many (most?) of us do surgery first.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Feb 14, 2020 10:24PM WC3 wrote:

etnasgrl:

I'm really sorry you have to deal this again. I had TCHP, which is taxotere, carboplatin, herceptin, and perjeta. The taxotere and carboplatin are the chemotherapies and herceptin and perjeta are the targeted therapies. Everyone responds a little differently. Some people are laid up while others can get on with their day with some modifications. Herceptin and/or perjeta did not cause me much more than a runny nose but I was pretty laid up from the chemotherapy itself.

I detailed all of my side effects here.

https://community.breastcancer.org/forum/69/topics...

Some things to know...

You can cold cap try to keep your hair but it's not guaranteed to work. Some people also ice their hands and feet during infusions in an attempt to prevent neuropathy. I did not ice my hands or feet but only developed mild neuropathy which has largely resolved.

Water will probably taste bad. I could only drink carbonated water that was lime flavored, or Pellegrino, and soda on occasion.

Regular toothpaste might be problematic. I used Biotene toothpaste instead. A note, it is often kept in a slightly different location from the regular toothpaste.


Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Feb 14, 2020 11:32PM MinusTwo wrote:

I iced on TCHP. I did not lose my nails, which is why I iced. I did get neuropathy and it hasn't resolved after 5+ years.

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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Feb 15, 2020 12:45AM WC3 wrote:

MinusTwo:

I haven't done any in depth research on it, but sometimes I wonder if icing is actually contributing to the neuropathy because most people I have heard from who developed bad neuropathy iced.

I have Raynaud's so I just held a luke cold water bottle and took my shoes off and let the Raynaud's do it's thing.

I developed some numbness in my toes and pins and needles in my fingers but that was pretty much the extent of my neuropathy. Maybe I just got lucky though.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)

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