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! 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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Mar 3, 2012 04:03PM dancetrancer wrote:

Thanks kwajkid - I've added you to the list.  Sorry to hear about the pancreatitis...that does not sound fun.  Very glad to hear about the 3 years without recurrence...I hear that is the sweet spot.  Someone posted on another thread that most Her2+'s recur within the first 2 years, a few more by 3 years, and minimal after that (of course if you are ER+ you still have the longer term risk of recurrence with that, but it's not usually as high a risk as the Her2+).  

Cold caps work! 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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Mar 5, 2012 10:01PM Hindsfeet wrote:

The findings, presented today at the CRTC-AACR San Antonio Breast Cancer Symposium, is the first large study to analyze this cohort and represents a shift in the way women with early-stage HER2 positive breast cancer should be assessed for risk of recurrence and considered for treatment, said the study's senior author, Ana M. Gonzalez-Angulo, M.D, assistant professor in M. D. Anderson's Department of Breast Medical Oncology and Systems Biology.

Herceptin, also known as trastuzumab, was approved for use in 1998 for women whose advanced breast cancer expresses Human Epidermal growth factor Receptor 2, or HER2. Approximately 15-20 percent of breast cancer cells produce an excess amount of the HER2 growth protein on their surface, which makes the cancer more aggressive. Herceptin is a monoclonal antibody that latches on to these proteins and inhibits tumor growth.

"This study represents a current debate within clinical practice - the risk of recurrence for early-stage breast cancer patients with HER2 positive tumors one centimeter or smaller," said Gonzalez-Angulo. "Our findings show that women with early stage HER2 positive breast cancer have a 23 percent chance of recurrence. In contrast, the five-year survival rate of all women with such early-stage breast cancer is more than 90 percent.

"The findings indicate that physicians need to consider offering these women Herceptin-based therapy in the post-operative, or adjuvant setting," Gonzalez-Angulo continued.

Current guidelines call for no additional therapy after surgery and radiation if tumors are less than five millimeters and Herceptin-based adjuvant therapy should be discussed with patients if the tumors are from six to 10 millimeters, Gonzalez-Angulo explained.

According to Gonzalez-Angulo, the number of patients with HER2 positive tumors smaller than one centimeter continues to increase as breast cancer surveillance and early detection become increasingly sophisticated.

"Before now, there's been no data regarding how to treat these women because they were excluded from all the definitive trials confirming Herceptin's benefit. This data strongly suggests that we need to rethink how we treat early-stage breast cancer patients with HER2 positive tumors and likely offer anti-HER2 therapy in the adjuvant setting."

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Mar 5, 2012 10:15PM dancetrancer wrote:

Thanks evebarry.   That study was done by MD Anderson I believe in 2008.   I am very familiar with Dr. Gonzalez's work, and it is why I am considering tx for my tumor (3 mm).  This and other studies have established pretty strongly that chemo/Herceptin is usually indicated for tumors > = 6 mm.  Even though tumors < 6mm were included in this study, many MD's still do not agree that chemo/Herceptin is recommended for this subgroup.  They say the number of patients in this study was too small to draw firm conclusions from, that it is retrospective data, and that b/c t1a's and t1b's were grouped together, you cannot distinguish if t1a's have the same amount of risk for recurrence as t1b's.  Despite all these criticisms of the study, it still has strong enough data for me to give it merit and make me be concerned about my recurrence risk. 

Hence, the controversy for t1a's.   No one REALLY knows for sure what our recurrence risk is, b/c the studies are few and small.  

I feel that MD Anderson treats these small tumors most aggressively compared to other facilities.  I am going to have a consult with them to see if they indeed feel my particular case warrants chemo/Herceptin or Herceptin alone.  I'm hoping I will have peace of mind with my decision, either way, then.  I will update what I learn after my consult.   

Cold caps work! 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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Mar 5, 2012 10:59PM whippetlover wrote:

Just a reminder that the 23% recurrence rate mentioned in the MD Anderson study is made up of both local recurrences and distant recurrences. I don't have the figures at hand but it is important to note this.

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Mar 5, 2012 11:06PM wrote:

Yes, that is an important point.  The 22.9% recurrence rate over five years is made up of 13.6% distant recurrence and 9.3% local recurrence. 

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Mar 6, 2012 08:37AM dancetrancer wrote:

Yes, it's the distant recurrence rate (aka risk of metastasis) that is most concerning to me.  

Cold caps work! 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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Mar 6, 2012 09:46AM dancetrancer wrote:

Not sure if I posted this article before by Dr. Winer from Dana Farber.  It gives a good overview of the controversy surrounding treatment for subcentimeter HER2+ tumors, and he makes a specific comment regarding tumors < 5 mm.   He makes a good point that trials will likely never be done specifically for t1a's b/c of the small number of patients that fall into this subgroup and the difficulty that would be incurred trying to recruit large enough numbers for the study.   So most likely we will never have the "gold standard" type of randomized research trials to help us make decisions. 

I've noticed from this and other articles that it seems Dr. Winer falls on the do not treat side for t1a's, vs. MD Anderson that leans toward consider treatment side.   

Current Challenges in HER2-positive Breast Cancer 

In summary, small, node-negative HER2-positive tumors have better outcomes than do larger HER2-positive tumors, and as such, consideration of potential toxicities should strongly influence any recommendations on adjuvant therapy. Within the realm of subcentimeter HER2-positive tumors, there is a relative lack of data with T1a ( 0.5 cm) tumors and microinvasive tumors. The optimal chemotherapy regimen in this subgroup is debatable, and it is unlikely that there would be a definite answer derived from prospective phase III trials as a result of its low prevalence and event rates that would necessitate a large cohort. Overall, our threshold for treatment mirrors that put forth by the NCCN, that consideration of trastuzumab and chemotherapy should be limited to tumors 0.5 cm in size and larger. The toxicity trade-off in smaller tumors may not be justifiable with current adjuvant regimens used in larger or node-positive HER2-positive tumors.  

Cold caps work! 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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Mar 6, 2012 12:58PM - edited Mar 6, 2012 01:06PM by AlaskaAngel

Both sources (MD Anderson and Winer's) have been ones I respect, and I often suggest to others that they seek info to make their decision from them, as to me they seem not only to be way out in front in leadership toward a more current and future approach toward dealing with bc, but also don't put blinders on when it comes to the truth about SE's, etc. and actually also put some effort into doing work to try to address them.

In this particular difference of opinion, this is what comes to mind for me:

When it comes to the numbers game, what I marvel at is that best guestimates of our individual risk are so completely blind to the full range of the basis for cancers. What do I mean by that? I mean, that even though as intelligent people we already know that various human practices do matter in increasing the likelihood of getting cancer. Smoking. Obesity. Poor diet.  Lack of regular exercise. Etc. So my common sense tells me that if I tend to practice more of those negative practices, I stand more of a chance of increasing my odds of recurrence, and if I tend not to, my chance of recurrence is lower. In other words, when considering the statistics as they apply to me, I know that the worst end of the statistical estimates is most likely to be composed of those with poor practices, and the best end of the statistical estimates is most likely to be composed of those with healthy practices. So even though the range for tiny cancers does include people who end up with recurrence if they only do "x" and not more treatment, I know where I personally am most likely to be within that range. I don't see doctors ever considering or talking about that when trying to guide those with smaller evidence of cancer. It gets back to what I consider to be a dangerous philosophy that is so pervasive in making recommendations for bc. What seems like the most humane approach, i.e., overkill for many in favor of saving a few, is actually less humane because of the failure to include genuine consideration of the very real factors of human behavior so that fewer humans are subjected to the full range of the negative effects of treatment that is not benign.

I could understand, for example, a doctor telling a patient with a miniscule amount of cancer that if she practices more of those factors then she might want to lean toward additional treatment. But that is not what the NCCN guidelines take into account, and that is not what is discussed in the physician-patient session advising treatment.

I don't believe in leaving common sense out of the objective evaluation.

To this, were I the doctor advising a patient, I would tell them to take into consideration their ability to tolerate risk. If they are a person who is very highly anxious about any risk, they should lean toward doing the treatment to provide them with more peace of mind. If they are not, then it they may wish to take a different approach in dealing with the general recommendation for treatment.


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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Mar 13, 2012 06:48PM dancetrancer wrote:

Hi all.  I'm just re-reading some articles I found in preparation for my onc consult next week to make a final decision.  Not sure if I've shared this one before, but it's worth re-sharing if I haven't.  My take away is that I'll be asking what my ki67 is and also will be still strongly considering (and discussing with the onc) herceptin monotherapy (well, with Tamoxifen, but no chemo).  

Small HER2-positive, node-negative breast cancer: who should receive systemic adjuvant treatment?

summary and conclusions

Approximately 6%-10% of small node-negative tumors are HER2 positive, and there is fair evidence for an increased risk of relapse and decreased survival in these patients (Table 1). However, there are no data directly supporting the use of adjuvant treatment including trastuzumab in this patient population. Subgroup analyses from adjuvant trastuzumab trials show that patients with node-negative pT1c tumors derive the same benefit from adjuvant chemotherapy and trastuzumab as compared with patients with higher risk tumors. Furthermore, two retrospective investigations suggest that patients with small node-negative HER2-positive disease may derive clinically relevant benefit from adjuvant trastuzumab-based therapy. As the risk of relapse may be substantial even in small node-negative tumors, and assumed that the relative risk reduction is similar to larger tumors, the absolute benefit should be large enough to consider adjuvant treatment in these patients. However, it is still unclear how to individualize adjuvant treatment, and which type of adjuvant treatment best fits specified patient subgroups. NCCN and AGO guidelines recommend to consider treatment in HER2-positive pT1bpN0 tumors [23, 25]. Available data do not clearly show a substantial difference in the risk of relapse between pT1a and pT1b HER2-positive tumors. Current data rather suggest tumor biology (proliferation and grade) than shear tumor size to be a more relevant predictor for the risk assessment in these small HER2-positive tumors. The authors suggest that these factors should be included in addition to tumor size in decision making and that adjuvant treatment may also be considered in patients with HER2-positive tumors <6 mm when factors such as increased Ki-67 and/or poor nuclear grade suggest aggressive tumor biology. The value of the hormone receptor status is still controversial and not very helpful since in most of the studies the hormone receptor status was without any influence on the risk of relapse in small HER2-positive tumors. Individual adjuvant treatment must weigh the benefits and risks of the treatment with the risk of relapse and death from breast cancer. The less reliable data we have, the more difficult is the choice of individual treatment. In addition to decide who should be treated, the optimal adjuvant treatment in small HER2-positive tumors is still an open question. Short-term treatment with chemotherapy and trastuzumab has been shown to be effective in reducing the risk of recurrence in HER2-positive breast cancer in the FinHER trial. These less intensive regimens with less toxicity (including little cardiac toxicity) and good tolerability might prove to be adequate for patients with small HER2-positive, node-negative tumors. Furthermore, the addition of trastuzumab to adjuvant endocrine treatment without chemotherapy in small HER2-positive, estrogen receptor-positive tumors is equally controversial as is the addition of chemotherapy to endocrine therapy plus trastuzumab. Data from the metastatic setting suggest endocrine treatment in combination with anti-HER2 targeted treatment to be superior to endocrine therapy alone [28-30]. However, data in the adjuvant setting are lacking. Still for about half of the panelists at the St. Gallen Consensus Conference 2009, this combination was a reasonable option for patients with HER2 and hormone receptor-positive node-negative tumors [31]. Although the proportion of HER2 positivity is lower in small tumors, the absolute increase of lower stage tumors by widespread screening urges for further evaluation in these patients. Future studies with prospective biomarker analysis or gene profiling may better define which patients are at increased risk of relapse and which groups of patients benefit the most from adjuvant systemic treatment. However, the conduct of a randomized clinical trial in this niche population is extremely challenging and might not be realized.

Cold caps work! 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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Mar 13, 2012 09:30PM - edited Mar 13, 2012 09:31PM by whippetlover

Hi dancetrainer. None of the research relating to t1a tumors is absolutely definitive. The article that you post above is of interest though, as it states that randomized clinical trials will probably never happen in this population. So many of the studies which investigate t1a/t1b tumors are flawed as the numbers are so small or they are retrospective which can be problematic.

At the end of the day it will be your decision and one that you have to feel most comfortable with. You have certainly armed yourself well by doing as much research as is possible and you have helped inform many of us as well. Finding out your KI 67 score will give you the final piece of the equation that you need to make this very big decision.

I, and others, will be watching for your post once you have been to see the onc next week. I think that AA is right when she says that it is really all about our individual ability to tolerate risk.

Very best wishes to you. 

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