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 08:49PM dancetrancer wrote:

Beesie, you (and anyone who wants to comment!) are ALWAYS welcome!  If someone isn't t1A stage, but has valuable information to share, PLEASE do!  I took the liberty of quoting your comments and putting them in the entry note, so that I don't freak out newbies.  I would hate to do that and sway anyone any particular direction when as of yet I haven't found a preponderance of evidence either way.  Oh, and thank you for the info about how to make this a sticky.  I guess I have to see if we have enough responses before I ask the moderators to do that.

JSandstrom, you have been added to the stats and thank you for sharing your story! I had found you earlier on another thread, so don't be surprised when the numbers don't change on the entry note. I did not know your entire story/decision making process/onc recommendations so thank you very much for sharing all of that!  

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 1, 2012 06:03PM carcharm wrote:

I was dx in 2009. I was not given an option of herceptin-it was a must have for me. I had 2 foci of invasion of dcis totaling .3cm. I received TCH. I was 49 at time of dx and I am ER/PR- HER2+++. I could have had a lumptectomy but I wanted a mastectomy. I wanted a bilateral mastectomy but was told no way-no need. I am seeing someone new and am scheduling a prophylactic mastectomy of my remaining breast soon. I see way too many women having reoccurance in the opposite breasts even though the docs say the stats don't say that.

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Feb 2, 2012 10:38PM dancetrancer wrote:

Thanks for sharing your story carcharm! I will add your stats!  Do you know what grade your IDC was? 

I wanted to share this link for newbies - another thread that includes lots of discussion on research, etc. for our group. 

http://community.breastcancer.org/forum/80/topic/781401?page=1

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 2, 2012 10:52PM - edited Feb 2, 2012 10:53PM by KCD

A very timely post for me...

T1a  with 4mm IDC  (also have DCIS) I am in my early 30's

Have had a lumpectomy with radiation to follow

1st/2nd )  board said no chemo or herceptin

3r) Onc  Herceptin only

4th)  appt was Today, and the Onc says Chemo & Herceptin

I am so overwhelmed, my radiation simulation appt was already scheduled for next week.

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Feb 2, 2012 10:55PM dancetrancer wrote:

Oh gosh, KCD, I sooooooooooooo feel your pain!!!!!!!!!!  I have two more onc appts next week.  2 oncs so far told me no, not enough research.  It really sucks to be in our position. I'm about to start radiation, too.  Had my simulation 9 days ago.  

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 3, 2012 10:10AM - edited Feb 3, 2012 10:13AM by Maja2213

Hi dancetrancer I wrote on your other post but will put my stats here to help your survey. 

1. Diagnosed Oct 2010, age 44. 

2. DCIS, 1.7 x .4 cm Grade 3.  ER +.    On top of the DCIS was an IDC of .4 cm.  Grade 3.  ER+ 80% but at low intensity.  PR+ 40% but also at low intensity.  Her 2+ at 3+.

3. My local MO recommended Herceptin after confirming Her 2 status with FISH.  At the time (Dec 2010) I think he said the latest San Antonio conference (which was happening that week) was now recommending some chemo with Herceptin. I could be a bit off on that info, there was a lot to take in at the time.  He also felt that my age had to be considered since I could potentially have 50 years in which a recurrence could occur.  Strongly recommended "chemo light" - Taxol and Herceptin and strongly recommended a second consult because of the low stage.

4. Had second opinion at Mass General Hospital.  That MO felt that ACTH would be way over the top.  TCH would be the "tried and true" method of treatment.  Suggested Taxol and Herceptin only to minimize side effects but results of studies using this treatment were not yet in.  Choice of any of those chemos would be up to me.

5. Chose Taxol and Herceptin. 12 weekly treatments, then nine months of Herceptin alone.

6. Started Tamoxifen.  Current plan is 2 years (I seem to be in menopause/chemopause) and then switch to an AI for an unknown number of years.  (The length of AI treatment recommendations seem to change monthly.)

7. Surgery was lumpectomy, so also had radiation.  The radiation oncologist indicated that even if I had a mx he would have wanted to radiate my lymph nodes in my underarm and up to my collarbone anyway because of the Her2 neu diagnosis.  He takes Her2 very seriously and said he wouldn't know for years how well Herceptin really works so he has to treat the patient as if there is no Herceptin.

8. My age (and 2 aunts with DCIS) also led the doctors to suggest I have the BRCA testing.  I had no mutations.

9. I can say I have had no recurrence, but, then again, it has only been one year and only five weeks since I ended Herceptin treatment.  I did have a mammogram which was fine.

Dx 10/1/2010, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Feb 3, 2012 11:00AM puce wrote:

Hmmm,

Diagnosed April 11. No radiation recommended for me at Beth Isreal in Boston. 1.8mm  (so stage 1c) with some DCIS in left side.  No nodes.  Had a double mastectomy for prevention.  Had neoadjuvent chemo 4 dose dense A/C every 2 weeks, 12 Taxol/Herceptin evdery week, no sign of tumor left by the time they did the mastectomy.  It completely melted.  DCIS still present (does not respond to chemo I was told).  Herceptin until September every 3 weeks. Will ask again why no radiation. The response I got first was that with the Mastectomy and chemo there would be no cancer left for sure???  I certainly keep my fingers and toes crossed.

Dx 4/29/2011, IDC, 1cm, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Feb 3, 2012 11:21AM dancetrancer wrote:

Maja - thanks for sharing the details of your story.  The radiation info is very, very interesting to me.  My rad onc first told me we'd have to radiate my nodes when she found out about the HER2, but when I told her I had had an SNB that was clear (she had forgotten...that did not instill my confidence in her, but oh well, she may have not had my chart with her when she called), she said we didn't have to radiate the nodes.  Very interesting indeed....

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 3, 2012 11:26AM dancetrancer wrote:

Puce - I'm confused...if your tumor is 1.8 mm, you would be a t1A, not a t1C.  Did you mean 1.8 cm??? 

Also, if you had a mastectomy with good margins, you most likely didn't need radiation.  The only reason I need it after my BMX is b/c I did not get good margins.   

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 3, 2012 12:22PM Maja2213 wrote:

I should add re the radiation.  My RO said he was glad I came to him with the opportunity to do radiation.  I do think if I had done bmx, my MO never even would have sent me to the RO because it wouldn't be standard treatment for stage 1a.  And with my care, the MO is sort of in charge for arranging things. My RO was originally trained in eastern Europe and then came to the US so maybe he sees things differently.

Dx 10/1/2010, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+

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