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Topic: calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 31, 2012 09:59AM - edited Apr 24, 2014 06:29AM by dancetrancer

dancetrancer wrote:

I decided to start this thread to help others who may end up in this "grey" area and are struggling to make a decision about chemo/Herceptin or not.  Current national guidelines do not recommend treatment for our stage.  Treatment is only considered for 6 mm and up HER2+ sisters.  HOWEVER, some docs do still treat t1A sisters, which makes for a very confusing and stressful decision making process for t1A gals.  I thought we could run an ongoing list of sisters, sharing our decision making process, recommendations, etc.  I will be keeping an informal poll and will update it as we go along.  So far, here is what I found:

  • 6 had no treatment (no Herceptin; some had chemo without Herceptin) and recurred with METS (one dx 2004, one 2007, one 2009, two 2010; one 2012)
  • 7 had no treatment with dx ranging from 2007 to 2012.  One has had a local recurrence 3 years after diagnosis. All others have had no recurrence yet. 
  • 29 have had treatment or are currently undergoing tx; 1 had a local recurrence after tx (ranging 2008 to 2012) 

This is completely unscientific, I know, as there likely is bias b/c women who are more aggressive about treatment may be more likely to frequent these boards, but, I still find the data helpful.  

Of the treated group:
12 had taxol plus Herceptin
12 had TCH
1 refused chemo but doc agreed to Herceptin only

1 had chemo only recommended, no Herceptin

2 had AC-TH

1 had  FECX4 with Herceptin 

 If you reply, please share the size of your IDC, year you were diagnosed, your age (if you are ok with that), Grade of IDC, ER/PR status, recommendations you received from MD's, decision you made, and treatment (if tx'd) you had.  Also note if you have had a recurrence or not. Oh and also if you don't mind sharing, tell us if you are in the USA or another country.  I am interested in seeing if there is a trend for treatment or no treatment based upon country.  

Thank you, I will update the numbers as we move along.   

P.S.  Edited to add an important point made by Beesie in this thread, so that newbies don't freak out when they see whatever numbers happen to be above:   "those who have problems tend to stay on the board longer or return to the board or search out the board when they do have problems. For example, judging by the women here, one would think that the recurrence rate and rate of mets (generally, not just HER2+) is much higher than it actually is. There are thousands of women who've popped in here for a short while, completed their treatment and then, because they don't have a recurrence, are never seen again. It's generally only the women who have a recurrence who return. It makes sense, but it means that the numbers will be skewed to those who have a recurrence vs. those who've happily moved on with their lives and have no further problems." 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 30, 2020 10:15AM - edited Nov 30, 2020 03:50PM by MCBaker

Glad to see this thread surface again. We are a small minority, with some difficult decisions because the stats aren't there. Doing well. Just had a mammo and meet with the breast surgeon. Lefty is doing well. Righty the imposter is a bit large, and I hope to lose some weight.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Nov 30, 2020 12:32PM moslmic wrote:

yes, I wish I had seen this before, it would have made my decision easier, as it is I’m glad I have read up as it confirms to me that to take the treatment was the best thing. One oncologist was very like, you can if you want but you don’t have to, nothing to confirm a benefit or not. When I went in to sign consent forms though that oncologist did say to me that I had made the right choice, which made me feel better. It’s a difficult position to be in though when you are going through the chemo, feeling ill and thinking, well I chose to do this!

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Nov 30, 2020 01:03PM dancetrancer wrote:

It is indeed a difficult decision! Glad some new people found the thread helpful! I'm 9 years post diagnosis and still doing well. Grateful!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Dec 1, 2020 06:48AM DogMomRunner wrote:

moslmic- glad you made it through the chemo. Herceptin treatments are much easier. Sadly most of the body hair comes back. :(

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 6/5/2019 Herceptin (trastuzumab) Chemotherapy 6/5/2019 Taxol (paclitaxel) Radiation Therapy 9/21/2019 Whole-breast: Breast
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Dec 1, 2020 10:15PM alliesmom15 wrote:

I will be ten years out in May. Everything’s is going great.
I’m going to try to get the implants out this next year, maybe try some fat transfers and just leave out the implants altogether.

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Dec 2, 2020 05:17PM Cwhitney wrote:

I don't come here very much but life is good! I'm almost 5 years out in May and this thread and it's ladies made me feel confident that I choose the right course to beat this beast. Congrats on getting through chemo. Herceptin is a breeze.

Dx 5/6/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/16 nodes, ER+/PR+, HER2+ (FISH) Surgery 5/17/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement Targeted Therapy 7/10/2016 Herceptin (trastuzumab) Chemotherapy 7/10/2016 Taxotere (docetaxel)
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Dec 6, 2020 03:23PM moslmic wrote:

I’m so glad to see so many positive stories! As someone just beginning I’ve had some really low moments but seeing how you all are has given me hope in some really dark times xxx

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Aug 6, 2021 04:22AM moslmic wrote:

Anyone as part of this group offered Nerlynx? I have, the side effects sound horrendous but I think I’m going to go with it. For my relatively small (2.5mm) invasive it does feel a bit like is it too much? Especially when some from this cohort have opted for no treatment whatsoever and still been ok. Currently I have had 12 weeks Taxol, 1 year of Herceptin, 20 sessions of radiotherapy and will be on Tamoxifen for 10 years.

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Aug 9, 2021 08:55PM ajminn3 wrote:

moslmic- I was not offered it. I asked about about it and originally wanted to take it, but my oncologist did not see the overall benefit for me at this time. I still don’t entirely know what makes some MO’s suggest it and others not..

Dx 12/2019, DCIS, Left, 6cm+, Stage 0, Grade 2 Dx 1/2020, IDC, Left, <1cm, Stage IIA, 1/3 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 10, 2021 09:06AM MCBaker wrote:

The differences between you and me-- you had one node positive. You had radiation and hormone suppression. Hormone suppression would not work for me. He offered Nerlynx, but his attitude was that he did so only because Mayo requires that it be offered.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
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Oct 13, 2021 07:09PM - edited Oct 13, 2021 07:13PM by Rosamond

Just wanted to give an update after a long time away. 8 years out. Had my annual 3D mammogram and check up today on my remaining natural breast. All fine. Started annual u/s at 6 month mark, annually, 6 months ago as level C density.

Never had chemo, nor herceptin but took tamoxifen religiously for 5 years. Keep my weight reasonable and work on my fitness.

The last 8 years have been joyful and sad and surprising. Since my cancer was removed, I got separated and divorced, met my soulmate and remarried, and then I lost him to brain cancer. My daughter developed an eating disorder but is doing well now. My father died after a lengthy journey with dementia, my sister developed a serious but manageable illness, and my mother was recently diagnosed with slow growing lymphoma. I had terrible debt and didn't make enough money. I have a fabulous job now and no debt, and I've traveled to Brazil, Paris, Amsterdam, Stockholm, Toronto, Miami, and more. I inherited some assets from my late husband. I am dating. I had kidney stone issues, vertigo, costochondritis, and plantar fasciitis. I am happily dating someone and renovating my home. Looking forward to retirement in a few years! I am so very grateful for the opportunity to experience all of it.

And I am so very appreciative to have had such a great checkup today of all days, World Metastatic BC Day.

May you all be well and thrive.

Rosamond, my Calico cat, was a breast cancer survivor for 8 years. >^.^ Dx 6/10/2013, DCIS, 5cm, Grade 2, ER+/PR+ Dx 8/1/2013, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/7/2013 Lymph node removal: Right, Sentinel Surgery 8/14/2013 Mastectomy: Right; Reconstruction (right): Silicone implant Hormonal Therapy 9/4/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/3/2014 Reconstruction (left); Reconstruction (right)

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