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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Jan 31, 2012 10:01AM dancetrancer wrote:

I have a lengthy, complicated story about my decision making process here:

community.breastcancer.org/for... 

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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Jan 31, 2012 01:44PM - edited Jan 31, 2012 02:00PM by mommichelle

Add me.  I was diagnosed with a 4mm her2+ tumor. Grade 2, 0/2 nodes.  Biopsy first showed DCIS.  It was widespread so I knew I wanted the mastectomy.  On original pathology, the invasive component showed up as 0.7mm.  It wasn't until the second opinion that they said they thought it was 4mm (almost six times the size).  Three opinions 1. no chemo, 2. chemo and herceptin, 3. no chemo. I went with the chemo/herceptin option.  That doctor talked about treating the biology of the tumor and not the size.  I also knew that I did not want to look back and say what if.  I had a right mastectomy on June 18th, 2010 and just had a PLMX with immediate DIEP/tram recon on January 13th, 2012.  I was looking over my shoulder, wishing I had had the other removed from the get go. It is very interesting to read over the data.  I was getting myself all freaked out again until I started realizing some of the stats are for people who did not receive treatment.  My onco and lifemath put my risk at about 3%.  I guess that is more overall, still being alive, not necessarily without reoccurance.  Definitely an interesting thread, but scary too.

TCH x 6 - finished 12/2/10...herceptin till 8/11 and tamoxifen to start in the New year! Dx 6/11/2010, IDC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR+, HER2+
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Jan 31, 2012 01:56PM - edited Jan 31, 2012 07:09PM by Dejaboo

Thanks for starting this Thread Dancetrancer.

I think it will help other women down the road

Perimenopause at DX

1.5 cm DCIS, 1.2 mm IDC. Her 2+, ER+ PR-, Grade 1.

Lumpectomy (because BS didnt believe I was serious about a BLM)

BLM, No Rads, No Chemo, No Tamox

I had a Hysterectomy because of Hemoraging, I kept my Ovaries

statistics are just a group of numbers looking for an argument Dx 3/7/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2+
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Jan 31, 2012 02:00PM - edited Jan 31, 2012 02:01PM by dancetrancer

Hi Mommichelle!  Thank you for sharing your story!!!  I think this thread will be very helpful for those who follow in our footsteps. (Ah, just saw your post dejaboo, thanks!) 

I had actually found you and recorded your data (how does it feel to be stalked?  LOL!!!)  Any chance you are willing to share your age at diagnosis?  If not, no problem, or PM me if that's better...trying to gather age data, too, b/c of course that makes a big difference in recommendations and potential for recurrence).

I hear you on the BMX.  I was pretty stunned to find out I had cancer on my supposed prophylactic side (it was a very small focus, but glad I did it and caught it).  None of the imaging had shown it (mammo, MRI).  Hope you are recovering well!  

Yep, I find it all very scary, too, even though I know theoretically our risk is small.   You can feel pretty good knowing you did everything you could, that's for sure! 

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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Jan 31, 2012 02:11PM mommichelle wrote:

I was 36 at diagnosis.  No lump, just clusters of microcalcifications.  It was so hard to make the decisions I had to make and I am so glad to be getting through everything.  I pray for all of us and hope that this disease is soon in the past.  I also hope for some more data for those of us who have felt in the "grey area" and had to make some very tough decisions on our own.  We are a unique group and there haven't been much studies on our stats.

TCH x 6 - finished 12/2/10...herceptin till 8/11 and tamoxifen to start in the New year! Dx 6/11/2010, IDC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR+, HER2+
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Jan 31, 2012 02:14PM dancetrancer wrote:

Thanks mommichelle!  I just found another person while reading another thread who decided no chemo after 2 MO's told her no.  I am going to add it to the original post.  

This is definitely an incredibly difficult decision with no easy answer either way.   

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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Jan 31, 2012 02:32PM dancetrancer wrote:

Oh, and for any newbies who may read this, the 2011 National Guidelines from NCCN do not officially recommend chemo/Herceptin for tumors our size. only for 6 mm and up.  In the footnotes, though they do say this:

"The prognosis of patients with T1a and T1b tumors that are node negative is generally favorable even when HER2 is amplified or overexpressed.  This is a population of breast cancer patients that was not studied in the available randomized trials.  The decision for use of trastuzumab therapy in this cohort of patients must balance the known toxicities of trastuzumab, such as cardiac toxicity, and the uncertain, absolute benefits that may exist with trastuzumab therapy."  

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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Jan 31, 2012 04:19PM - edited Jan 31, 2012 04:20PM by dancetrancer

Sharing this podcast with one of the authors from the 2009 MD Anderson study:

www3.mdanderson.org/streams/Au... 

Just goes to show the controversy and how difficult this decision is.  One needs to hear all sides before deciding.  

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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Jan 31, 2012 05:53PM beesie.is.out-of-office wrote:

dancetrancer, I don't belong here because my invasion was 1mm and it wasn't HER2 tested (for which I am grateful everyday because I don't have to question whether or not I should have had any other treatments). I do think it's a great thread and hopefully it will keep going for a long time and more and more women will join the list and the discussion. Once the thread gains a bit more traction, you might want to ask the Moderators if they will 'pin' it to the top of the forum list so that it always stays active. 

One comment.... You mentioned a possible bias in the data because "women who are more aggressive about treatment may be more likely to frequent these boards". From what I've seen in my time here, that's very true.  There is also another bias that you should be aware of.  This is that 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.

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Jan 31, 2012 06:39PM 2ns_Jenn wrote:

Add me to the list...

DX 6/23/10 - age 44 (found microcalcifications during routine mammo)
DCIS - .7cm (margin 0.1mm)
IDC - .4cm (margin 0.5mm)

Grade 2, 0/2 nodes, ER+ (95%), PR+ (80%), HER2+ (FISH HER2/CEP17 ratio 7.6), No KI-67 score, no Oncotype

1 onc said no treatment (rad or T), 1 onc said TCH x4, 1 onc said undecided, 1 onc said Rads+T

Lumpectomy 7/16/10
Radiation (28 + 5 boost) 11/12/10
Tamoxifen - stopped after 6 months (due to terrible side effects) MO told me it was only providing a 1% benefit so I chose improved QOL

They say hindsight is 20/20 and while I don't regret no chemo, I do regret not investigating BMX (I have VERY dense breasts full of fibrocystic tissue). 

There was only one other woman who had almost identical stats as me while I was going through my decision making process (she chose the same treatment options I did) but it seems like they are finding more of us everyday.

Best of luck on your decision!!
Jenn

Jenn - I have fought once. Unfortunately, I am fighting again. This time...I will win! Dx 6/23/2010, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 7/16/2010 Lumpectomy: Left Radiation Therapy 9/28/2010 Breast Dx 4/9/2013, DCIS, <1cm, Stage 0, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/4/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/29/2013 Reconstruction (left); Reconstruction (right)

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