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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Jul 4, 2012 02:41PM Lauren423 wrote:

Hi All!  I found this thread last night and I got butterflies!  I finally found a thread where we all have the same questions about treatment.  

I was 40 in March and had my first mammogram...and here I am now (41)!  Wow... so glad I turned 40 last year instead of 39. :)

Surgery on May 16 removed a 3 cm mass of DCIS with 2 IDC tumors - .4 cm and .3 cm, both with LVI, both ER+/PR+, HER2+. 

Saw my local MO here in Louisville, KY and he strongly suggested Herceptin (tx every 3 weeks for a year) and Tamoxifen (5 years).  But he didn't know for sure, so referred me to a breast cancer oncologist in Nashville at Vanderbilt (Dr. Ingrid Mayer). I took a day trip, and she recommends Taxol/Herceptin weekly x 12, then Herception for 9 months every 3 weeks, and Tamoxifen (5 yrs). 

I decided to go with that treatment plan.  I feel like this is my chance to get the HER2+ cells if they are out there, and I may not have that chance again in the future if cancer develops elsewhere.  I am scheduled to get a port placed next week, and my first treatment is next Friday, the 13th...whoa!   

--Lauren, 41 Dx 3/21/2012, IDC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Hormonal Therapy Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel)
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Jul 4, 2012 02:47PM voraciousreader wrote:

Dancetrancer... I realize that it takes lots of evidence to update guidelines... HOWEVER... A tiny footnote???.... That might do the trick! I always say...read the book... And don't forget the footnotes because they might just tell a different story......

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 02:48PM dancetrancer wrote:

Hi Lauren!  It's all happens so quickly sometimes!  So glad you found us and thank you for sharing your story!  LVI would definitely push me towards doing the chemo.  I will add your info to the informal poll I am collecting. Welcome to our little group! 

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 02:50PM voraciousreader wrote:

Lauren... I wish you well during your active treatment!

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 02:53PM dancetrancer wrote:

I agree VR, I agree!

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 04:39PM chachamom wrote:

Welcome, Lauren! I wish you well in your treatment.

I find it humorous (in a weird/dark way) that it's supposed to be an advantage to be older.....and to have a belly (for a successful DIEP). LOL.
THE TWO THINGS I NEVER THOUGHT I WOULD BE CONSIDERED LUCKY FOR!!! Haha

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 04:49PM dancetrancer wrote:

Chachamom, you crack me up!  Laughing  It's true, though!!! 
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 07:07PM - edited Jul 4, 2012 07:08PM by AlaskaAngel

The question I raised had nothing to do with convincing anyone one way or the other. I thought the doctor had possibly provided an answer to the question when he spoke with his patient. It is the obvious question to ask, unless one prefers not to delve into the particulars and prefers to accept the doctor's impression without question.

If the earliest HER2+ is the most likely to get into the bloodstream (i.e., more likely than later, larger HER2+), then why would the percentage of spread for the earliest HER2+ patients be as low as 25%?

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 7, 2012 01:36AM Lmont79 wrote:

I will try and add some clarity about my Dennis Slamon appt. although I will be perfectly honest in saying that I had had a major surgery the day before and was not at the top of my game. He did make the point that from a biological perspective he knows her2 to be strong out of the gates ( that was one of the analogies he used) especially if you are under 35 yrs old, high fish test and high nuclear grade...which for me I have all three. We did let him know that UCLA is really on an island compared to what ALL the other MO are saying, including 6 from Johns Hopkins. So far UCLA is rhe only ones who have recommended chemo. He said he was "astounded" that JH didn't suggest chemo...and I think he said it 3 times. He did say that the studies are limited at best and there is not a lot of research of women with t1a t1b her2+ tumors. He indicated that not doing chemo leaves me at a 77% chance of no reaccurance and that chemo would put me at a 97%. He also indicated that the NCCN guideline are a bit behind the times (not sure I totally agree with that but..)

At the end of the day we are going to go to MD Anderson and then try and put it all out on the table to make a decision. One thing someone told me was that the percentages are hard because cancer is so individual and there is no way of knowing how each person is effected by it.. .it's a little bit of biology, medicine, and luck as far as I can see.

Anyways, hoping to be sharp as tacks when we go to Texas in 10 days, fully loaded with questions, current studies, all the info from all the MO we have seen and get some good answers...will share when I return!

Love and light to everyone!

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 7, 2012 02:15AM weety wrote:

I'm just slightly excluded from this group (7mm) but I find all this info fascinating!  I'm in So Cal, just about an hour from UCLA, so I was lucky enough that my kaiser facility was pretty much in lines with the UCLA school of thought rather than the NCCN guidelines (which in 2009 had tumors 6mm-9mm in the "grey" area for chemo and at that time tumors 1-5mm were not recommended chemo)  My onc also stated that my young age (38 at diagnosis) and the fact that I had discovered the lump during breast feeding my 6 month old (so considered a pregnancy-related cancer) that chemo (TCH) with herceptin was pretty much a given.  I also went for a 2nd opinion at UCLA, but did not see Dr.Slamon.  She had the same recommendation.

It is interesting to me to find that the guidelines have become even more strict (now even considering chemo/herceptin for the smallest of the invasive tumors) and that UCLA is still promoting it even more generously than that!  I am hitting my 3 years from diagnosis this month.  I have never second guessed my treatment, and am thankful that it was offered to me.

Dx 7/17/2009, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR-, HER2+ Surgery 4/19/2010 Prophylactic ovary removal Surgery 4/10/2013 Prophylactic mastectomy: Right Hormonal Therapy Femara (letrozole) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left

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