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 3 of 80 (791 results)

Log in to post a reply

Feb 3, 2012 12:46PM dancetrancer wrote:

Maja, it may very well be the different training.  I'm trying to make note of what countries we are all from, to see if that is affecting treatment recommendations as well.  

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

Feb 5, 2012 12:59PM dancetrancer wrote:

Bumping this for any newbies who might be watching active topics.

I also wanted to share MD Anderson's protocols for breast cancer treatment.  They are the ones who did the studies on t1A,b recurrence rates.  If you look at page 2 you can see if you are node negative, tumor < = .5 cm, the recommendations are:

1)  no adjuvant therapy or

2) consider hormonal therapy if tumor is hormone receptor positive

3)  consider trastuzumab-based chemotherapy if HER2 positive

I plan to take this with me to my next two onc appts along with the research papers and will ask them if they would consider consulting with MD Anderson (if that is posssible) on my case to determine if I am high risk enough to require chemo/Herceptin.  

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

Feb 6, 2012 07:06PM - edited Feb 6, 2012 07:08PM by dancetrancer

Someone just posted this document on another thread:

Strategies for subtypes-dealing with the diversity of breast cancer: highlights of the St Gallen International Expert Consensus on the Primary Therapy of Early Breast Cancer 2011

There were I think about 40 or so members (most were from Europe and USA, not all were present for voting).  They voted on various controversial issues/topics on treatments.

The Panel unanimously supported the use of 1 year of trastuzumab as standard adjuvant treatment for patients with ‘HER2 positive' disease, and the majority were willing to extend
this to patients with pT1b, but not pT1a pN0 disease.

And if you read the more detailed summary here you will see they give details of the discussion surrounding t1A's on page 5. It says that the majority (61%) would not treat t1A tumors, but 79% would treat t1B tumors.

This international consensus panel information is helpful to me - makes me not feel so panicky about being given a "no" recommendation on treatment. However, that's not an overwhelming majority, so one can understand clearly the variability amongst recommendations we all receive.

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

Mar 2, 2012 05:19PM - edited Mar 2, 2012 05:23PM by Dlia

I was dignosed June 30th of 2011 my tumor size was 2 mm. The doctor's kept telling me how tiny it was and that I was only going to do just radiation. After recooperating from the lumpectomy they had a meeting with a team of doctors and had me and my husband to come after they met. Not worried or concerned because I thought they were going to tell me when radiation would start.They said because the cancer was her2 positivethey recommende that I do chemo/herceptin and radiation. I started chemo on Sept 12, 2011. I have done six regimens of Taxotere, Cytoxan and continuing Herceptin for 1 year until Sept 2012.  

Dx 6/30/2011, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER-/PR-, HER2+
Log in to post a reply

Mar 2, 2012 05:47PM dancetrancer wrote:

Hi Dlia! Thank you so much for sharing your story!  Wow, bet you were shocked at that meeting.  And for any who are wondering, I still haven't decided.  Will finish rads soon and meet with MD Anderson for their opinion...then will decide. 

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

Mar 2, 2012 05:55PM noellech wrote:

Add me to the list:

Diagnosed at 42 with 5 mm  triple positive. No nodes, no lvi, grade 1 or 2. Lots of DCIS so had mast. No invasive found at mast, all taken out at biopsy. 

 Did TCH and now on tamoxifen. It has been almost four years since diagnosis and everything seems fine. Sometimes regret the chemo, but I know no one in my family regrets it. I have three kids and my youngest was 3 at the time, so did it for them. 

I actually love the tamoxifen, i will stay on it as long as they let me. Fewer periods and I feel that my bones, heart, and breasts are being protected.

All the best, Noelle. 

Dx 6/21/2008, IDC, <1cm, Stage IA, Grade 1, 0/6 nodes, ER+/PR+, HER2+
Log in to post a reply

Mar 2, 2012 06:07PM - edited Mar 2, 2012 06:07PM by dancetrancer

Hey Noelle!  I'm curious - what is it you regret about the chemo?  Do you have some long term consequences?  I admit, I am most worried about chronic neuropathy risk.  I don't have children, but I still have lots of drive and motivation to stay here with DH for as long as possible.  I'm hoping MD Anderson can give me better insight into my risk for recurrence so I can decide if the chemo risks are worth it.  Unfortunately, from all of my research, I know that no one really knows the true risk for a HER2+ t1a patient.  Lots of controversy. 
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

Mar 3, 2012 01:44PM Dlia wrote:

@ Dancertrancer... I was totally shocked!! The doctor kept beating around the bush with if it was E or P we would do this... and I said is it Her2 or Triple neg and he said we'll get to that in a minute, in me was saying he better hurry up because I'm about to pass out!! When they told me what they recommended I was at a blank and my husband said she's going to do whatever she has to do. The nurse asked me if I was upset because I was going to loose my hair... I said lady that is the least of my worries. I had already knew about Her2 and Triple negative from my sister and cousin... I couldn't cry in front of the general but when I got home and he left I cried all day but the next day I was  back on track. When people talk to me they start off sad and when they hear my voice they change and say oh you sound good... lol what are they expecting me to sound like? 

Dx 6/30/2011, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER-/PR-, HER2+
Log in to post a reply

Mar 3, 2012 02:00PM dancetrancer wrote:

It is a shocker for sure Dlia.  I found out when I was having lunch with a friend (got a phone call that I was Her2+).  I let out so many f-bombs - felt bad 'cause my friend's 2 year old was right there, LOL!  And I hear ya on people's comments - they always say to me "You look so good!"  Yeah, I haven't lost my hair (since no chemo/etc. yet), so I look perfectly healthy to everyone.  I think it freaks others out b/c they know in general I am super healthy with diet, exercise, etc...and if it hit me...wow, it could hit them.  I get annoyed but at the same time, I really understand they have no clue what to say - and are just trying to be supportive in any way they can think of.  It's hard to know what to say to someone who has cancer until you've been through it yourself.  

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

Mar 3, 2012 03:42PM kwajkid wrote:

tough decision but i am glad I got the treatment - lumpectomy, Taxol for 6 weeks (developed pancreatitis from it and couldn't continue it), Herceptin for a year, and radiation after the Taxol. 3 mm,   1a, grade 3 ER weakly pos, HER 2+.   almost three years without recurrence.  diagnosed at age 54. 

Dx 6/19/2009, IDC, <1cm, Stage IA, Grade 3, ER+/PR-, HER2+

Page 3 of 80 (791 results)

Scroll to top button