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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Jun 8, 2012 03:00PM dancetrancer wrote:

hopeful123, thanks for posting the study!  I look forward to when it is fully published, and I can read the details.  It's a small number of patients, but still very encouraging.  It makes me feel even more comfortable stopping at 4 tx vs 6 (TCH for me), considering I am ER/PR+.  Yay for no recurrence!!! 
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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Jun 8, 2012 03:15PM chachamom wrote:

Thanks hopeful!

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
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Jun 8, 2012 03:18PM dancetrancer wrote:

I found this additional abstract from the ASCO 2012 meeting:

Impact of adjuvant trastuzumab-based chemotherapy in T1ab node-negative HER2 overexpressing breast carcinomas.

Jean-Sebastien Frenel, Manuel Jorge Rodrigues, Julien Peron, Vano Yann-Alexandre, Johanna Wassermann, Marc Debled, Francois Picaud, Laurence Albiges, Anne Vincent-Salomon, Paul H. Cottu; Institut de Cancerologie de l'Ouest/Site Rene Gauducheau, Saint-Herblain, France; Institut Curie, Paris, France; Centre Léon Bérard, Lyon, France; Centre Antoine Lassagne, Nice, France; Centre Rene Huguenin/Institut Curie, Paris, France; Institut Bergonié, South-West Comprehensive Cancer Center, Bordeaux, France; Institut Claudius Regaud, Toulouse, France; Department of Medical Oncology, Institut Gustave Roussy, Villejuif, France


Background: HER2 overexpression has been recognized as a pejorative prognostic factor in node negative T1ab (T1abN0) breast tumors. Randomized clinical trials have shown benefit of adjuvant trastuzumab-based chemotherapy (ATBC) for node-positive and/or greater than 1 cm (T1c or more) HER2+ breast carcinomas. There are no prospective efficacy data of ATBC in T1abN0 HER2+ tumors. Methods: We retrospectively evaluated 276 cases of T1ab node-negative HER2+ breast tumors in 8 French Comprehensive Cancer Centers. We assessed clinical, therapeutic features and outcome. We estimated the probability of disease-free survival (DFS), analyzed associations of ATBC, patient and tumor characteristics with DFS and prognosis factors using the log-rank test, multivariate analysis with logistic regression and Cox's proportional hazards model. Results: Out of the 276 T1abN0 cases, 129 (47%) received ATBC (ATBC+) and 123 (45%) were not treated by either trastuzumab or chemotherapy (ATBC-). Of these 252 ATBC+ or ATBC- patients, decision of ATBC was associated with date of diagnosis (before or after ASCO 2005 Annual Meeting when interim results from three trastuzumab adjuvant trials were reported) and with poor prognosis features: negative hormone receptors (HR-) status, Elston-Ellis high grade, tumor size > 5 mm and age. With a median follow-up of 44 months 16 recurrences were observed (13 in the ATBC- group, 2 in the ATBC+ and 1 with adjuvant chemotherapy alone). Nine recurrences were distant metastases. A survival benefit in ATBC+ was observed with a 99% 40-months DFS versus 93% for ATBC- (logrank p-test = 0.018). In an exploratory analysis, two factors were significantly associated with worst prognosis for ATBC- that were not observed for ATBC+ : HR- status (98% 40-months DFS for ATBC+ patients versus 84% for ATBC- patients; logrank p-test = 0.0003) and presence of lymphovascular invasion (100% 40-months DFS for ATBC+ versus 73% in ATBC- cases; logrank p-test = 0.003). Conclusions: In our series ATBC is associated with a significant reduction of risk of recurrence of T1abN0 HER2+ tumors. A clear DFS benefit of ATBC was observed in HR- tumors and/or in presence of lymphovascular invasion.


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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Jun 8, 2012 04:00PM hopeful123 wrote:

Dance- I saw that too. They all look promising. If you do see the publication PM me please.
I am moving on to Weekly Taxol/herceptin. Hope this isn't as bad. You need to have a big celebration once you are done.

Dx 1/2012, IDC, Stage IA, Grade 3, ER+/PR-, HER2+
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Jun 8, 2012 04:12PM dancetrancer wrote:

Thanks hopeful!!!  You too!!!  I've heard the taxol is not as bad as the AC, just gotta really watch for neuropathy (supplements and ice nails, etc.).   I just have one more next week.  That will be my 4th TCH.  I've decided the risks of tx # 5 and 6 for my size tumor are not worth the benefit...hope I'm right.  So many tough decisions along this path! 

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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Jun 10, 2012 08:06AM dancetrancer wrote:

Thought this article may be of interest to my t1A sisters.  It examines the practice patterns in Italy and was recently published April 2012.

 Adjuvant chemotherapy of pT1a and pT1b breast carcinoma: results from the NEMESI study.


The prognosis of pT1a-pT1b breast cancer (BC) used to be considered very good, with a 10-y RFS of 90%. However, some retrospective studies reported a 10-y RFS of 81%-86% and suggested benefit from adjuvant systemic therapy.
To evaluate the variables that determined the choice of adjuvant chemotherapy and the type of chemotherapy delivered in pT1a-pT1b BC, we analysed the small tumours enrolled in the NEMESI study.

Out of 1,894 patients with pathological stage I-II BC enrolled in NEMESI, 402 (21.2%) were pT1a-pT1b. Adjuvant chemotherapy was delivered in 127/402 (31.59%). Younger age, grading G3, high proliferative index, ER-negative and HER2-positive status were significantly associated with the decision to administer adjuvant chemotherapy. An anthracycline without taxane regimen was administered in 59.1% of patients, anthracycline with taxane in 24.4%, a CMF-like regimen in 14.2% and taxane in 2.4%. Adjuvant chemotherapy was administered in 88.4% triple-negative and 73.46% HER2-positive pT1a-pT1b BC. Adjuvant trastuzumab was delivered in 30/49 HER2-positive BC (61.2%).

Adjuvant chemotherapy was delivered in 31.59% T1a-pT1b BC treated at 63 Italian oncological centres from January 2008 to June 2008. The choice to deliver chemotherapy was based on biological prognostic factors. Anthracycline-based chemotherapy was administered in 83.5% patients. 

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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Jun 10, 2012 09:13PM vjm wrote:

Hi Dance - what day is your last tx? I go on Friday if all lab work favourable. Just when you start feeling like yourself again......!!!! Finally able to drink water without it tasting like chemicals and get out and about. Thanks for posting this research - it really helps remind me why I am going through all this with such a small tumor. I continue to experience SOBOE with palpitations, emotional waves, and weepiness when I try to go out walking or with Qigong. Haven't tried yoga since #3. Pisses me off. Hopefully it will dissipate once #4 is over and not be r/t the Herceptin. You are very busy supporting so many others on this chat - I don't seem to have the energy to sit at the computer very long - and want you to know how much you are appreciated.Smile With extreme and sincere gratitude, vjm xoxo

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
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Jun 11, 2012 08:14AM dancetrancer wrote:

Hi vjm! Thank you so much for your very kind words. It meant a lot to me. I have so much gratitude to the women who walked this path ahead of me and helped me make a decision; I try to pay it forward when I can.

My 4th tx is scheduled for Wednesday, pending bloodwork as well. I had a slight drop in kidney function, so we are retesting and then have to make decisions from there. I so hope you start feeling better soon - I agree, the heart palpations are concerning. Hoping it is just fatigue related to bloodwork and has nothing to do with Herceptin. I guess we both will be due for our 3 month echo's soon and will definitely know more then!

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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Jun 21, 2012 09:13PM Lmont79 wrote:

I am a new member and I am having a difficult time figuring out what topic/group to join. I am 33yrs old was diagnosed with large DCIS stage 0 in my right breast in April 2012. Based on mamo, MRI and ultrasound my tumor seemed Iintact and I had no lymph node swelling. My core biopsy came back with the following diagnisis: nucleur grade 3, ER + 14 perc., PR-. Because of the size on the DCIS and my age I opted for a skin sparing bilateral mastectomy with SND. My left breast and 1 left side lymph node came back completely negative, no sign of cancer. On my right side I hade 5 lymph nodes removed, all negative. The DCIS was 7 cm with very small margin .5mm on both the posterior and anterior side, my O'S took the top layer of pectoral muscle to help with the small posterior margin. All margins were clear with the exception of 1 microscopic DCIS evident in one of the path slides. My pec muscle and nipple and ariola skin were all negative. I have a centrally located (within DCIS) 2 invasive components: 1.6mm plus focal micro invasion .8mm. My invasive component is Er+70%+2, PR+10%+2, HER2+(3+), Bcl-2-, Ki-67 30%, p53+ (3+). My FISH results: HER2/CEP-17: 5.83, HER2 signal count:19.53, CEP-17 signal count:3.35. I have been told by 3 radiologist to do 50 g of radiation over 5 weeks. 3 MO's have said no chemo with 5 years tamoxifen. 2 MO's have said based the aggressive component of HER2+ the size is of invasive cancer is not as significant as the biology of the invasive cancer (triple positive) and they would recommend TCH chemo with a year of herceptin. Getting 3 more MO options in the coming week. The OMs that reccomended chemo feel very strongly that there is a good chance, even with neg nodes, that the HER+ has gotten into my blood stream and a reoccurance in the next year would not be curable. The med onc that say no chemo, and I have recently had 7 from Johns Hopkins reviewed my path and say no chemo, all suggests that because this began as DCIS and then had very small invasive spot, 1.65 mm and a second microinvasive spot .8 mm they don't feel that chemo is appropriate. My hubby and I will leave in a few weeks to see a med onc at MD Anderson who specializes in her2+. We will also see Dennis Slamon next week to hear his thoughts (I live in L.A so no travel for that one). On a side not I am super healthy, mom of two small boys and breast fed both. Having a really hard time sorting out the right decision regarding chemo!

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
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Jun 21, 2012 09:55PM dancetrancer wrote:

Lmont79, this is the right thread for you - welcome!   You may also want to review my personal thread where I went through h*ll trying to decide whether to do chemo or not:  

< 5 mm HER2+ IDC...why NOT chemo??? 

I, too, flew to MD Anderson to see a specialist in small HER2+ tumors.  Chemo was recommended for me by them (I had 4 opinions total - 1 said definitely no chemo/H, two said definitely chemo/H, one said would do Herceptin monotherapy if it would make me feel better).  

MDA said b/c of my age (and of course their HER2+ subcentimeter research) they felt my recurrence risk was high enough to warrant the chemo/Herceptin risks.  National guidelines, however, do not recommend chemo/Herceptin for < 6 mm.  There is quite a bit of controversy.  Get all of your opinions, read as much as you can, and then try to feel in your gut what you think is the right decision for you.  It is a very hard decision to make - I really feel for you!  

It came down to for me, thinking about what I'd regret more - side effects from chemo that could be long lasting, or it coming back as metastatic and then being incurable.  MDA recommended 6...I figured I'd try and see how it went and if I needed to stop I would.  So, I have had 4 TCH's and decided to stop and go to Herceptin only.  I've had a rough chemo experience and at this point feel I've done what I needed to do with the chemo and that the herceptin will really protect me from here on.  Hopefully the 4 will be enough - seems like many are only doing 4 with the tiny tumors.

Hope this helps - please check in whenever you like with questions/thoughts/what you decided, etc... 

Also, I would LOVE to hear what MDA says to you AND what Dr. Slamon says - so please do report back!!!   

BTW, I had small margins ant and post, too, and had to have rads on my L side.  I feel your pain - we have very similar situations!  

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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