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 06:59AM - edited Apr 24, 2014 03:29AM by dancetrancer

Posted on: Jan 31, 2012 06:59AM - edited Apr 24, 2014 03:29AM 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 7, 2012 02:52AM voraciousreader wrote:

What I find most interesting regarding the NCCN guidelines is that they are, from year to year, a moving target. From the time of my diagnosis to now, the guidelines for my type of BC have changed. Less treatment is now being recommended. I think the wisest thing to do when reading the guidelines is to read several years of guidelines and look for trends. Furthermore, I think what's going on here is a group think mentality. Not saying that that is a bad or a good thing. However, I think one has to be mindful that certain groups might think and behave differently from other groups. Not long ago I read that depending upon what part of the country one lives in, the decision to do lumpectomy vs mastectomy ( all things being equal) will be affected. I read patients in the northeast's preference was lumpectomy. Whereas in the south, the preference was mastectomy. Researchers do not have an explanation at this time for factors that might be influencing this decision. From this discussion, it is interesting to note that there are so many differences of opinion especially since there is so little quantifiable evidence to make a hard recommendation.

I still find it fascinating that despite little hard evidence to support aggressive treatment for the smallest HER2 tumors, that Dr. Slamon's recommendations are not well known in the trenches. Is it possible that each major institution is working in a vacuum? I also am intregued by the lack of difference of opinion at JH. Hmmmm....

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 7, 2012 07:11AM hopeful123 wrote:

I have posted here before but thought I would add my info. I am also outside the range of this Topic, my IDC was 8 mm, grade 3, very high FISH (7 fold higher). I am getting treated at MDA. I started off as DCIS at biopsy, and at that point there was no question of chemo it was just surgery. But once the pathology came back from my BMX there was just no question. I am doing AC-TH. I understand the known risks of Chemo and even know that mist of the drugs are still new and long term risks are unknown. But I also know that I am decreasing my probability of having a recurrence. I am afraid all this in the end is a game of odds and each one of us feels comfortable with certain decisions. Hoping that all of us fall on the side of the curve with no recurrences.

Dx 1/2012, IDC, Stage IA, Grade 3, ER+/PR-, HER2+
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Jul 7, 2012 09:13AM AlaskaAngel wrote:

DCIS is far more likely to be HER2+ than IDC, so in the transition from DCIS to IDC (as well as in the failure to transition from DCIS to IDC) may be where there is uncertainty and confusion in determining the true risk based on HER2+.

So perhaps one could have some DCIS that is HER2+  as well as some IDC that is not HER2+, and end up being considered HER2+ for the IDC that is present. That could be one explanation for why there would be far more small, supposedly "HER2+" tumors that so rarely get into the blood stream, even though HER2 positivity is most active in the earliest developmental period.

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 09:39AM chachamom wrote:

Interesting considerations and postings. I agree with Hopeful .......hope we all land on the side of the curve with no reoccurrences. I remember my first MO saying that there would probably never be enough of us (>1mm but <5mm HER2+ sisters) to do a study to validate any benefit to chemo/Herceptin. Maybe sometime in the future there will be a retrospective. In the meantime I'm hoping I get through the first five years post surgery without recurrence as I understand that's the greatest risk. Blessings to all!

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 5/29/2012
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Jul 7, 2012 02:10PM chachamom wrote:

Weird....the last part of my comment is cut off....not enough of us to ever have clinical validation........but maybe a retrospective someday in the future.

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 5/29/2012
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Jul 7, 2012 02:16PM dancetrancer wrote:

Chacha - there are a few retrospective treatment studies out now for tumors our size (combined with t1b's), but yeah, nothing randomized, double-blinded.  Maybe our numbers will continue to increase as technology for detection gets better.  Nothing to help us right now, 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 7, 2012 07:35PM chachamom wrote:

Thanks, Dance........or even better, maybe they'll find a cure before then!

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 5/29/2012
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Jul 7, 2012 08:29PM dancetrancer wrote:

Now you're talking chacha! 

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 15, 2012 06:30AM - edited Jul 18, 2012 03:05AM by Driftway

I am close - 7mm IDC ER- HER + grade 3, neg nodes and we were told at Memorial in NYC that TH (Taxol/Herceptin 12 wks) is the way to go, but no studies on long term for under 9mm t1A and B tumors.

TH is very attractive since no Taxotere, which apparently has 6% chance permanent hair loss - very scary - and no Adriamycin, with the 4% cardiac issues which could prevent future Herceptin use.

Any TH'ers here with info on long term for t1A and t1B? I know that Dana Farber has about 400 patients on TH.
I wonder what Slamon would think of TH vs TCH?
I was told TH much less toxic than TCH - no need for neulasta, 12 weeks instead of 18 weeks, no Taxotere.. And, Taxol weekly slightly beats Taxotere every 3 weeks in long term stats.

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Jul 15, 2012 07:16AM dancetrancer wrote:

Hi Driftway and welcome!  I think the THX12 is a very viable treatment regimen, but yes, no long term studies on it yet.  That's why MD And wouldn't recommend it for me yet -said the trial data isn't in yet.  I would have preferred TaxolX12 with H (a kinder, gentler regimen), but I decided I'd follow their advise, except I did stop at 4 tx instead of the full 6.   I too was very afraid of Taxotere and permanent hair loss - that's one of the reasons why I used cold caps - saved my hair!  

I hope this helps!  Hopefully those who have done TaxolX12 will chime in.  I also know fluffqueen had a tumor around your size and did Taxol - you may want to PM her.   

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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