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

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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Feb 15, 2014 09:10AM dancetrancer wrote:

Miche, welcome to the thread.  I am very sorry to here your cancer has returned. :(((  May I ask, how many millimeters was the invasive portion of your cancer? 

I find it interesting that your recurrence is ER negative.  I wonder if the Tamoxifen would have done anything to prevent that recurrence anyways, since it is ER-.  I don't know, just thinking about it.  Perhaps it may have recurred regardless of whether you took Tamoxifen or not. 

P.S.  I see you are on the cold caps thread, too - I had great success with cold caps and wish you the same! 

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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Feb 17, 2014 12:38PM michethevanquisher wrote:

My initial diagnoses showed 6% of the invasive cancer (<5mm) to be ER+ and 65% to be HER2+ yet my oncologist suggested tamoxifin. I decided against the tamoxifen--and my new oncologist called the ER+ a red herring. Should have pain attention to the HER2 status and been on Herceptin. Tamoxifen wouldn't have done anything to the HER2 invasion.

Dx 6/2012, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR-, HER2+ Dx 1/2014, <1cm, Stage IV, metastasized to liver, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 2/12/2014 Perjeta (pertuzumab) Targeted Therapy 2/12/2014 Herceptin (trastuzumab) Chemotherapy 2/12/2014 Taxotere (docetaxel)
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Feb 17, 2014 02:01PM dancetrancer wrote:

Miche - I'm really confused about them describing 65% of your tumor as being HER2+.   Usually they will say your tumor is "X" millimeters or centimeters large.   Then they will describe how strongly that tumor is ER+ based upon a percentage.  Lastly, they will test the tumor for HER2 and deem it either HER2+++ or not (two types of tests may be done to confirm).  Describing HER2+ as a percentage is something I've never heard of.   Confusing!  

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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Feb 18, 2014 07:40AM michethevanquisher wrote:

You're right, Dancetrancer, I was wrong, just writing it from memory--remembering seeing something about 65% and assuming it was referring to the HER2 at 3+ , FISH with a ratio of 6.9.  My memory for numbers was all wrong! The ER+ was weakly positive 4% (AQUA at 16).  Ki-67 markers elevated at 29%. The largest infiltration was 0.16mm but the entire infiltration was multifocal. Still, no large areas of infiltration and negative sentinal nodes. In short, it didn't put me into the group of getting some chemo or Herceptin. And then my Onc was pushing tamoxifen so hard I didn't think about the HER2. Sorry about the confusion.

Dx 6/2012, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR-, HER2+ Dx 1/2014, <1cm, Stage IV, metastasized to liver, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 2/12/2014 Perjeta (pertuzumab) Targeted Therapy 2/12/2014 Herceptin (trastuzumab) Chemotherapy 2/12/2014 Taxotere (docetaxel)
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Feb 18, 2014 11:15AM dancetrancer wrote:

Ah, now it makes sense to me!   If your largest infiltration was 0.16 mm that is super duper tiny!  Even if multiple sites of microinvasion, you would still be classified as a microinvasion, not even t1a (unless you meant 1.6 mm).  chemo and herceptin for t1a's is so controversial, it would be even less likely to be recommended for a microinvasion.  I am saying all this to hopefully make you feel less upset about not getting chemo and Herceptin.  I don't think many, if ANY, docs would recommend it for a microinvasion.  And if you were only 4% ER+, the benefit of doing Tamoxifen would be much, much less compared to someone who was highly ER+.   For what it's worth, I think you did everything you could for your particular diagnosis.  Despite that, you recurred.   It is so not fair!   Cancer sucks.  :(  

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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Apr 5, 2014 12:12PM SLB11 wrote:

I am updating. I finished my last herceptin on January 20. At the beginning, of march I had a PET and  3 nodes lit up. The biopsy came back positive. It's hard not to think about "I should have just done the chemo the first time around"! I have surgery Monday then in May I start rads after that 4 taxotere/ perjeta/ herceptin. 

Dx 9/11/2012, IDC, <1cm, Stage IA, Grade 3, 0/0 nodes, ER+/PR+, HER2+ Surgery 10/18/2012 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 12/3/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/7/2013 Herceptin (trastuzumab) Surgery 2/14/2013 Reconstruction (left); Reconstruction (right) Dx 3/7/2014, IDC, Left, Stage IIIA, Grade 3, 3/10 nodes, ER+/PR+, HER2+ Surgery 4/7/2014 Lymph node removal: Left, Underarm/Axillary Radiation Therapy Whole breast: Breast, Lymph nodes Chemotherapy Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab)
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Apr 6, 2014 09:48AM dancetrancer wrote:

SLB11, I am so sorry to hear this.  So you did one TC and then a year of Herceptin - right?  I know it is hard, but you just can't Monday morning quarterback yourself on this.  The official guidelines do not recommend chemo or Herceptin for anything under 5 mm.  Doing chemo and Herceptin for our size tumors is controversial.  None of us knows what is the best decision - we make the best decision we can given the information we have at the time.  So many times it feels like when we make a decision we are throwing a dart at a target and going with whatever it tells us to do.  If only we had a crystal ball.  

It is so unfair to hear you had a recurrence in your nodes.  And for it to occur just a few months after a year of Herceptin - I am shocked, too. Sad  Did you have a PET prior to treatment?  Most don't, but some do to get a baseline before treatment.   It makes me wonder if you had some spread even before you had treatment, and they just missed it with the SNB.  I can't believe Herceptin for a year wouldn't wipe it all out, though.  So unfair.  Did you have your PET post treatment  just for regular screening purposes, or did you have swollen nodes present that they wanted to check out?  

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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Apr 7, 2014 11:21AM hopeful123 wrote:

SLB11- So sorry to hear about the recurrence. There is literature that shows that a fraction of Her2 positive cases may not respond to herceptin but that in those cases using a combination of taxotere/ perjeta/ herceptin may work better. So it may just be that yours falls in this category so don't blame yourself about not doing the chemo. I am keeping you in my thoughts and prayers.

Dx 1/2012, IDC, Stage IA, Grade 3, ER+/PR-, HER2+
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Apr 8, 2014 01:08AM Lmont79 wrote:

SLB11 so sorry to hear of a reaccurance. I saw so many different oncologist when I was first diagnosed and everyone one of them recommended different treatment plans or no treatment plan and I remember hearing over and over "there just aren't a lot of studies on your type of cancer diagnosis". That lack of knowledge puts us all in the difficult position of having to choose our treatment plans and cross our fingers that we chose right. I think that might be one of the hardest parts of cancer! I know someone who had a very similar diagnosis as me and we both did full chemo with a year of herceptin and she is mets, there are also woman on this thread that didn't do chemo or herceptin and are cancer free...it's soooo hard to know and mostly it just seems so unfair! Please keep us posted on your surgeries and progress. Sending lots of love and will hold a place for you in my heart xoxo

Dx 4/9/2012, IDC, <1cm, Stage I, Grade 3, 0/6 nodes, ER+/PR+, HER2+ Surgery 5/18/2012 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/31/2012 Herceptin (trastuzumab) Chemotherapy 7/31/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 11/14/2012 Breast
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Apr 8, 2014 02:36PM SLB11 wrote:

I had a PET before I started any treatment  in January 2013 and August 2013, both were clear. In March 2014, it showed the positive nodes. My oncologist was shocked! I just had surgery yesterday. Thank you guys so much for the support! I will keep you updated!!

Dx 9/11/2012, IDC, <1cm, Stage IA, Grade 3, 0/0 nodes, ER+/PR+, HER2+ Surgery 10/18/2012 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 12/3/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/7/2013 Herceptin (trastuzumab) Surgery 2/14/2013 Reconstruction (left); Reconstruction (right) Dx 3/7/2014, IDC, Left, Stage IIIA, Grade 3, 3/10 nodes, ER+/PR+, HER2+ Surgery 4/7/2014 Lymph node removal: Left, Underarm/Axillary Radiation Therapy Whole breast: Breast, Lymph nodes Chemotherapy Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab)

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