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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Jun 23, 2012 03:03AM chachamom wrote:

Hi, Cookie!

Jill. Age 59. "Life is a shipwreck, but we must not forget to sing in the lifeboats." - Voltaire. No chemo/herceptin and no radiation because the largest of multi focal tumors was 3mm Dx 3/12/2012, IDC, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ Hormonal Therapy 5/30/2012
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Jul 2, 2012 05:44PM dancetrancer wrote:

lmont79 - could you give us an update on what Dr. Slamon had to say?  Thanks! 
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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Jul 4, 2012 12:23AM Lmont79 wrote:

Sorry for the delay...I had surgery on Tuesday for my shifted expander and everything was much more than we anticipated, especially the recovery! We did meet with Dr. Dennis Slamon on wed (I was not at the top of my game post surgery, but my hubby did great!)
He basically said the same thing that Dr. Glaspy said in regards to biology trumping anatomy when it comes to small t1a her+ tumors. He recommended TCH with a year of herceptin. He was "astounded" that the 7 different medical oncs from johns Hopkins said no chemo. He also made the point that from what he knows about her2 + that it is the strongest in its beginning stage...meaning right when it breaks out and becomes invasive is when it has the most strength and he believes has the potential to get into the blood stream. He was glad to hear we were going to MD Anderson and thought that would be an important opinion to have as we try and make a decision. One thing I will say is that UCLA is not following the NCCN guidelines for treatment of t1a tumors and those guidelines seem to be a significant consideration for the 12 other med oncs that say no chemo.

So to Texas July 16th....

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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Jul 4, 2012 08:17AM dancetrancer wrote:

Fascinating lmont!  I can't believe you had surgery and then an MD appt the next day - wow!  I sure do hope you are feeling better and healing quickly! 

Thank you so much for posting what Dr. Slamon had to say.  It is reassuring to me that he has the same opinion as MD Anderson.  I had never heard about HER2+ being strongest when it first breaks out.  Dr. Slamon sure would know how it behaves biologically, given all the years he studied HER2+.  

It does make one wonder if some institutions just go "by the book" (aka NCCN standards) only.   

Best wishes for your MDA appt!   

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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Jul 4, 2012 01:23PM AlaskaAngel wrote:

If that is true, was any explanation given as to why the overwhelming majority of those very early stage HER2 positive bc patients do not go on to develop further breast cancer?

A.A.

Dx 12/3/2001, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+, Surgery 1/3/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/12/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 9/10/2002 Breast Hormonal Therapy 11/15/2002 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 4, 2012 01:37PM dancetrancer wrote:

B/c the recurrence rate is estimated at ~ 25%, which is not a majority.  I didn't need a majority (> 60%) estimated recurrence rate to make me scared enough to do chemo.  It's a personal decision, however, b/c of the risks of chemo and Herceptin.  I would never push my decision upon someone else, given that the research on this is obviously not as clear as we'd all like it to be.  That is not my intention with this thread, and I hope no one thinks it is.  My intention is to provide information to allow each person to make their own individual decision, and provide support to each other, no matter what is decided.  

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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Jul 4, 2012 01:42PM chachamom wrote:

Thanks for the update Lamont. I hadn't heard the "biology trumping anatomy" Before...although that's what I told both my MO's and my BS that was my concern. I hadn't heard that the HER2+ was strongest in the beginning either!

Well.....I hope my "anatomy" and age will help in my case!

Jill. Age 59. "Life is a shipwreck, but we must not forget to sing in the lifeboats." - Voltaire. No chemo/herceptin and no radiation because the largest of multi focal tumors was 3mm Dx 3/12/2012, IDC, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ Hormonal Therapy 5/30/2012
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Jul 4, 2012 01:53PM dancetrancer wrote:

I hope so too, Chacha!  I do think being older is an advantage here.  

BTW, Dr. Gonzalez put out a podcast about HER2+ where she talks about biology trumping size.  When I brought this point up to the first MO who told me absolutely no chemo, he said there is no good data to confirm that.  I pointed out the MD Anderson study, and he said that is just one study, and it is retrospective, so you can't draw conclusions from it.  Unfortunately, there are so few of us that it is highly unlikely that they will ever do prospective/randomized double-blinded trials for our size tumor.  So all we have to go on is retrospective studies, and our gut. 

When I told that MO that I knew this topic was controversial, he firmly said "No it isn't.  You don't need chemo."  Well, you can tell his mind was made up pretty firmly from the start, eh?   

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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Jul 4, 2012 02:19PM voraciousreader wrote:

Hmmmm.... Very, VERY interesting regarding aggressiveness... Really begs the question of how well known this is and if Slamon is correct, why haven't the guidelines been updated to reflect this knowledge? Also Dancetrancer, a majority begins, technically speaking, at 51%... ;)

Hope everyone is doing well! Happy 4th!

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jul 4, 2012 02:26PM dancetrancer wrote:

LOL, VR, you are, of course, correct...claiming chemobrain!  Ba-ha-ha! 

Good question, I suspect the guidelines have not been changed yet b/c the studies have been retrospective and there aren't a ton of them out there.   I wonder what Dr. Slamon would say to your question. 

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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