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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Jan 20, 2014 02:19PM dancetrancer wrote:

I hear ya!!!!!!!!  

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 21, 2014 10:30PM montana8000 wrote:

Hi everyone!! Great to read so much good news of good reports months and years out!!!!! Thank you all for continuing to write. I haven't written in a while but wanted to check in to say today was my last Herceptin, God Willing. Have an appointment in Feb with my oncologist and will hopefully get the port out in latter Feb. It's been over a year since treatment started and I'm so grateful that so far so good and the treatment plan is done. I'm also extremely grateful to live near a wonderful hospital and to be able to get excellent care there. As I've said in prior posts, I was really on the fence about getting the treatment the oncologist recommended and what I took away from this forum convinced me to do the whole thing. Of course someone else could read the same posts and decide it's best not to - which is why I'm so glad and grateful dancetrancer began the forum and others have generously contributed. For me, also realizing I'm really very fortunate to even have the opportunity to decide what to do when so many people, especially in other countries, just can't even get treatment if they want it, makes me feel humble and grateful. 2104 is a year of healing for all of us everywhere I trust. Thank you all for being here.

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Jan 22, 2014 05:06AM dancetrancer wrote:

montana, wonderful post!  So excited for you to be done with Herceptin and be getting that port out!  Port removal was one of the best days ever for me! 

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 22, 2014 09:20AM hopeful123 wrote:

Dejaboo- thanks for posting. Always great to hear such news!

Montano- Congratulations on being done with the treatment. I agree that this is a great thread. Even though I am outside the range I still learnt a lot from the posts.

Dx 1/2012, IDC, Stage IA, Grade 3, ER+/PR-, HER2+
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Jan 25, 2014 02:00PM codi10 wrote:

Just joined the website today, although I have certainly read many posts over the past 4 years for encouragement. I can happily say I am one of the 406 participants for this clinical Phase II study: I was diagnosed with IDC on 7/20/09 with a .09 cm tumor that was Her2+ with slight ER+. I was treated at Mass General & it is now 4 1/2 yrs. later with no disease recurrence. I was grateful that my oncologist recommended my participation in this trial.

Dx 7/29/2009, IDC, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2+
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Jan 25, 2014 02:25PM montana8000 wrote:

Thank you dancetrancer, hopeful123 and everyone for your support and encouragement!! Congratulations codi10!! Am participating in a breast cancer after care free exercise program that is amazing. Very grateful for that too. In time now that Herceptin is done want to lose weight, clean up my eating much, much more and just be healthy. Onward to whatever's next, hopefully all good for all.

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Jan 25, 2014 02:50PM codi10 wrote:

Thank you, montana 8000. I meant to say that the tumor was slightly < 1 cm (.9 not .09) I was 54 at the time of diagnosis; now I am 59. Both my mom (age 94) and sister (age 69) are also bc survivors. Both of my mom's sisters had bc and my sister and I (that's all the women in 2 generations) and yet I was tested for the BRCA 1&2 gene at Mass General and was negative. Just happy to be here in the US receiving the best care possible! <3

Dx 7/29/2009, IDC, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2+
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Jan 25, 2014 03:47PM dancetrancer wrote:

Awesome codi - welcome!  We are fortunate indeed to have access to such care. 

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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Feb 8, 2014 03:30PM Nunci wrote:

Hi! Newly dx at the age of 33 years old. 2 cm tumor ER+, Her2+, lumpectomy, currently going through 6 rounds of TCH then radiation. Stage 1 - negative nodes 

Dx 11/15/2013, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Dx 11/15/2013, DCIS, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 11/28/2013 Lumpectomy: Left Targeted Therapy 1/8/2014 Herceptin (trastuzumab) Chemotherapy 1/8/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 14, 2014 06:54AM michethevanquisher wrote:

I was t1A in June 2012 and had a mastectomy with nipple removal. Nodes were negative. No one suggested treating the HER2+ status, just the 6% of the tiny invasive component that was ER+. I chose not to take tamoxifin. 18 months later I have mets in my liver, HER2+ and ER-. Do I wish I'd done my homework better and asked for Herceptin? You bet! Everyone was so happy about the clear margins and negative nodes it was hard not to be happy myself. We've moved across the country and the docs here found the mets by exploring a an area she thought might be "cording" under my arm but was actually a swollen node. An area the oncologist on the west coast wasn't concerned about when I asked 6 months ago. Also, the cancer center here has done Herceptin trials and they are a little more focused on HER2+. My new oncologist called the ER+ = tamoxifin a "red herring". Just started herceptin, perjeta, taxotere. Bummer is I feel great, was just getting back to normal after the surgeries. Had no idea there was anything wrong.

Dx 6/2012, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR-, HER2+ Dx 1/2014, <1cm, Stage IV, metastasized to liver, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 2/11/2014 Perjeta (pertuzumab) Targeted Therapy 2/11/2014 Herceptin (trastuzumab) Chemotherapy 2/11/2014 Taxotere (docetaxel)

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