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.
Log in to post a reply

Page 7 of 80 (791 results)

Log in to post a reply

Jun 21, 2012 10:41PM Lmont79 wrote:

Dance trance...so interesting to read your thread and yes we seem to have very similar situations and are very determined to make the best decision! Just curious, who did you see at md Anderson?

So I have seen 5 of the top med oncs in Los Angeles, from 3 different institutions and as mentioned had the entire breast oncology team at Johns Hopkins say no chemo based on this beginning as DCIS and then having a less the 2 mminvasive component. Dr. Glaspy, from UCLA was the 2nd med onc that's saw and he was so convincing that it propelled us into more appts to try and figure it out. Honestly every dr I have seen has been amazing and all have 20+ yrs in field. So far I have 12 med oncs saying no chemo and 2 from UCLA saying chemo...once chemo has been put on the table it is hard to ignore!

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
Log in to post a reply

Jun 21, 2012 11:01PM dancetrancer wrote:

Lmont, I know!!!  It makes you feel like, uh-oh...I better do something, or I'll regret it.  Well, at least it does depending on your personality...I'm a worrier...love my life...wanted the best chance to live it a long time!  At the same time, didn't want to overtreat and regret any possible long-term chemo effects...such a TOUGH decision! It's  a very personal decision - has so much to do with your risk tolerance.  I saw Dr. Gonzalez, she was fantastic and extremely convincing (obviously, since I went ahead w/tx).   I am curious what she'd say about a 1.6 tumor...at what point DOES size make a difference, ya know?  Although you are even younger...and is the IDC Gr 2 or 3?   Hmmmmm...so many factors.  Who are you seeing?  

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.
Log in to post a reply

Jun 21, 2012 11:42PM Lmont79 wrote:

Dance trance, my DCIS was nuclear grade 3, my her2 invasive component was also 3....high grade.

We are seeing dr. Vincent Valero...it will be interesting to see what he has to say and if it is in line with what you were told. We go July 17 th so I will keep you posted, seeing dr. Slamon next week.

Ya it is kind of maddening to have really good doctors make really good arguments on both sides of the fence. Hopefully in 5 yrs from now there will be more info on this small her2 stuff. Hoping to eventually be convinced, one way or the other and be able to move forward and feel good about it. It seems my young age is a big player for the no chemo group, saying there is a longer time for more toxic risk to happen...but then the chemo group is saying I am so young it would be a tragedy if it came back..sigh!

One thing is for sure, I think I have earned a M.D from all the research I have put into this!

On a side note I will be going back to the o.r on Tuesday to have my right expander that has shifted into my armpit be put back into place. This needs to happen before radiation begins...this surgery is actually what is buying me some more research time, and allowing us to make our trip to Texas .

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
Log in to post a reply

Jun 21, 2012 11:55PM chachamom wrote:

LMont79.....sorry you are here....but this is a wonderful group of women who will support you in whatever decision you make! Do keep us posted on your consults at MDA and Dr. Salmon. Blessings to you!

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
Log in to post a reply

Jun 22, 2012 10:52AM dancetrancer wrote:

Lmont, awesome - looks like he was on the same study as Dr. G.


Early Stage, HER2 Positive Breast Cancer Patients at Increased Risk of Recurrence 

I won't be surprised if he recommends chemo, despite your IDC being even smaller than mine - since it is high grade and you are even younger than me.  They told me being younger increases your risk for recurrence.  They did an analysis of their data and found young age to be a higher risk factor.  I can find that study for you if you'd like it.    It will be very interesting to hear what Dr. V has to say!  

My experience at MDA was fantastic.  It's a big place, but everyone is so helpful.  I had to go by myself.  I stayed at a local hotel (I'll look it up if you want a recommendation) that was great - had a reduced rate for MDA patients - and had a free shuttle to MDA.  Once at MDA, if I looked lost, workers stopped to ask me if I needed help...I didn't have to ask.  And in the doc's office, they offered me a warm blanket.  Very smooth operation, very kind!

Can't wait to hear what Dr. Slamon has to say.  WOW!  Psyched for you to get to meet him!

LOL, my local doc tells me I know more about my specific subtype of cancer than the majority of oncologists.  I'm actually pretty dang sure he's right!  Except for Dr. Gonzalez...wow, she knew the research on this specific topic forwards and backwards! 

Good luck with your surgery - that "shift" does not sound fun!  

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.
Log in to post a reply

Jun 22, 2012 11:37AM Lmont79 wrote:

dancetrance,

i would love that study if you have it. i also will try and post some of the studies i have researched for other women like ourselves..it takes a lot of time to find the studies so sharing them is invaluable.

 will keep everyone posted about what Dr. Slamon has to say ( appt june 27) and then also will stay in touch until we leave for texas

 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
Log in to post a reply

Jun 22, 2012 01:22PM chachamom wrote:

Thanks for keeping us posted! FYI: when I asked my first MO if my age (57 and postmenapausal) had anything to do with him not recommending chemo/Herceptin with my .3cm HER2+ IDC, he said " no".......but everything I've seen since leads me to be convinced that as Dance says, the younger age increases recurrence risk and should be taken into account.

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
Log in to post a reply

Jun 22, 2012 01:37PM vjm wrote:

Lmont79 - I too was originally told no chemo for my 4mm HER2+, ER/PR+ tumor Grade 3 with no nodes.... until I started reading the latest research and my MO consulted three HER2+ experts and brought my case forward for panel review. 2 of the 10 on the panel said chemo, and all 3 experts on HER2+ suggested I do 4 treatments with cyclophosphamide, taxotere with Herceptin for a year. I start Tamoxifen mid-July. I had already started rad tx when they asked me to consider. It was such an interesting journey. When I did - I knew I had made the right one, started sleeping again, and was completely at peace with my decision. Chemo completed last Friday and I don't regret my decision one bit despite the challenges. Weary, but rich from the journey. Good luck... you will know. vjm xo
Dx 10/28/2011, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 11/29/2011 Lumpectomy: Right Surgery 12/28/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/12/2012 Breast Targeted Therapy 4/13/2012 Herceptin (trastuzumab) Chemotherapy 4/13/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy
Log in to post a reply

Jun 22, 2012 03:43PM dancetrancer wrote:

Here is the age study for t1ab patients:

Age and survival estimates in patients who have node-negative T1ab breast cancer by breast cancer subtype. 

Theriault RL, Litton JK, Mittendorf EA, Chen H, Meric-Bernstam F, Chavez-Macgregor M, Morrow PK, Woodward WA, Sahin A, Hortobagyi GN, Gonzalez-Angulo AM.


Source
Department of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.

Abstract

AIM:
This article evaluates the risk of recurrence for patients who have small node-negative breast cancer by age and tumor subtype.

METHODS:
One thousand twelve patients with a T1a,bN0 breast cancer diagnosed between 1990 and 2002 who did not receive chemotherapy or trastuzumab were included. Patients and tumor characteristics were compared using the χ(2) or Wilcoxon's rank sum tests. Survival outcomes were estimated with the Kaplan-Meier method and compared using the log-rank statistic. Cox proportional hazards models were used to determine association of breast cancer subtypes and age at diagnosis with other covariates.

RESULTS:
Median age was 51.5 years. There were 771 hormone receptor (HR)-positive, 98 HER2-positive, and 143 triple-negative breast cancers (TNBC). Six hundred ninety-three patients were > 50 years, and 33 patients were ≤ 35 years. For 5-year survival estimates, there were 118 deaths and overall survival was 94.6% (95% confidence interval [CI] = 93.2%, 96.1%). After adjusting for breast cancer subtype and other tumor characteristics, patients ≤ 35 had 2.51 (95% CI = 1.21-5.22) times greater risk of worse recurrence-free survival (RFS), and 2.60 (95% CI = 1.05-6.46) times greater risk of worse distant RFS (DRFS) compared to patients > 50 years old. Compared to patients with HR-positive disease, patients with HER2-positive breast cancer had 4.98 (95% CI = 2.91-8.53) times the risk of worse RFS and 4.70 (95% CI = 2.51-8.79) times greater risk of worse DRFS, and patients with TNBC had 2.71 (95% CI = 1.59-4.59) times greater risk of worse RFS and 2.08 (95% CI = 1.04-4.17) times greater risk of worse DRFS.

CONCLUSIONS:
In this cohort, patients with T1a,bN0 breast cancer, young age and breast cancer subtype were significantly associated with RFS and DRFS. 

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.
Log in to post a reply

Jun 22, 2012 08:33PM cookie2009 wrote:

Hi
I was stage 1 er pr negative,
Her2 positive.
Tumor size .2mm
No nodes
Mactomy left breast
No treatment
Diag 2009
Reconstruction still not done
Hugs,
Margie

Cookie Dx 5/5/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER-/PR-, HER2+

Page 7 of 80 (791 results)

Scroll to top button