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 06:59AM - edited Apr 24, 2014 03:29AM by dancetrancer

Posted on: Jan 31, 2012 06:59AM - edited Apr 24, 2014 03:29AM 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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Dec 21, 2013 09:15AM dancetrancer wrote:

Great news - love to hear it!

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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Jan 3, 2014 09:11PM Lmont79 wrote:

Also wanting to add an update, as it has been a very long time since I posted anything. I had my first 3 mo. check up since finishing herc. all was clear and good!!!

Dx 4/9/2012, IDC, <1cm, Stage I, Grade 3, 0/6 nodes, ER+/PR+, HER2+ Surgery 5/17/2012 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/30/2012 Herceptin (trastuzumab) Chemotherapy 7/30/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 11/13/2012 Breast
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Jan 4, 2014 04:44AM dancetrancer wrote:

Yay Lmont79!!!!!!!!!!!!!!!!!  Love hearing all clear reports!!!!  Here's to a great 2014 for all of us! 

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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Jan 6, 2014 11:43AM hopeful123 wrote:

Great to hear about all the clear reports! Wishing everyone a happy and healthy 2014!!

Dx 1/2012, IDC, Stage IA, Grade 3, ER+/PR-, HER2+
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Jan 15, 2014 12:22PM dancetrancer wrote:

Great news for those who had small tumors, were node negative, and decided to try the taxol+Herceptin regimen (which is less toxic than TCH or AC-TH). Phase II trial data in. (P.S.  I did TCH b/c my onc didn't feel comfortable trying out the Taxol+H regimen without more data on effectiveness.  If I were to do it all over again, I would definitely have gone the Taxol route!)

http://www.clinicaloncology.com//ViewArticle.aspx?ses=ogst&d=Solid+Tumors&d_id=148&i=ISSUE%3a+January+2014&i_id=1031&a_id=24756

For these reasons, researchers launched a Phase II trial of trastuzumab plus the less toxic chemotherapy paclitaxel in approximately 400 patients with HER2-positive, node-negative breast cancer with tumors smaller than 3 cm. Patients received paclitaxel 80 mg/m2 plus trastuzumab 2 mg/kg for 12 weeks, followed by 13 every-three-week doses of trastuzumab 6 mg/kg. Radiation and hormone therapy were started after completion of paclitaxel. Roughly 67% of patients were estrogen receptor-positive; 50% of tumors were 1 cm or smaller; and 42% were between 1 and 2 cm (Table).

The three-year, disease-free survival (DFS) rate was 98.7%, and the three-year, recurrence-free interval was 99.2%.

...

Dr. Hudis said clinicians should consider the regimen for stage I, HER2-positive, node-negative breast cancer patients. “This chemotherapy regimen is shorter and much less disruptive for patients, and generally, all around easier,” he said. “For patients with small tumors, only rarely will they experience relapse with this regimen.”

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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Jan 20, 2014 01:44PM Rlsteadman wrote:

I am  HER2+++ ER-PR-.  I am t1a and my IDC was 1 mm by 1.2mm.  The IDC was in the middle of DCIS. I am 56 years old.  I am not doing any chemo or adjuvant therapy. I saw 2 different MO and they both said no to it. One was at Mayo and one at  the University of MN.  They both said it was to small to treat. I felt I had gone to good medical centers. Now I  am nervous because so many of you did get treatment. I am currently going through radiation and feeling a little down after reading all your posts. It is so hard making all these decisions especially when the doctors don't agree on treatment.  

Dx 10/23/2013, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER-/PR-, HER2+ Surgery 12/1/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 1/7/2014 Breast, Lymph nodes Dx 5/16/2017, DCIS, Right, Stage 0 Surgery 6/21/2017 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): DIEP flap
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Jan 20, 2014 01:56PM dancetrancer wrote:

rlsteadman don't feel nervous, there are plenty who chose not to do chemo and are doing just fine.  Remember, it is more likely that those who chose to do treatment hang around longer on this board and have found this post.  So there is some bias in the numbers presented. 

Your tumor is the smallest in the t1a range, so that should give you even more confidence in your doctor's advice.  AND, you are over 50, which means your risk of recurrence is lower than for someone who is younger and gets a t1a that is HER2+.  

Maybe it will make you feel better to know that I at times have regrets I chose to do chemo.  It put me into early menopause, which will probably give me osteoporosis at an early age.  It also damaged my glucose regulation system, resulting in me becoming prediabetic.  I also have ringing in the ears (which I have adapted to) caused by chemo, and this side effect is also permanent.  Fortunately I did not develop neuropathy or end up in the hospital with neutropenic fever, which is a serious complication.  Chemo and Herceptin are not without risk. 

I'm sorry you are nervous about your treatment plan and hope this helps. 

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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Jan 20, 2014 02:02PM Dejaboo wrote:


Rlsteadman my IDC Her2+ Tumor was the same size as yours...Along with DCIS.   I was in my Mid 40s when DX.

I had no treatment other then surgery (a Mastectomy- so I did not have RADS) 

I am coming up on my 6 year cancerversary in March!

statistics are just a group of numbers looking for an argument Dx 3/7/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2+
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Jan 20, 2014 02:11PM dancetrancer wrote:

Woo-hoo dejaboo - SIX YEARS!!!!!!! 

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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Jan 20, 2014 02:15PM Dejaboo wrote:

Its more exciting then my Bday : )

statistics are just a group of numbers looking for an argument Dx 3/7/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2+

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