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 08:59AM - edited Apr 24, 2014 05:29AM by dancetrancer

Posted on: Jan 31, 2012 08:59AM - edited Apr 24, 2014 05:29AM 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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Oct 13, 2021 06:09PM - edited Oct 13, 2021 06:13PM by rosamond

Just wanted to give an update after a long time away. 8 years out. Had my annual 3D mammogram and check up today on my remaining natural breast. All fine. Started annual u/s at 6 month mark, annually, 6 months ago as level C density.

Never had chemo, nor herceptin but took tamoxifen religiously for 5 years. Keep my weight reasonable and work on my fitness.

The last 8 years have been joyful and sad and surprising. Since my cancer was removed, I got separated and divorced, met my soulmate and remarried, and then I lost him to brain cancer. My daughter developed an eating disorder but is doing well now. My father died after a lengthy journey with dementia, my sister developed a serious but manageable illness, and my mother was recently diagnosed with slow growing lymphoma. I had terrible debt and didn't make enough money. I have a fabulous job now and no debt, and I've traveled to Brazil, Paris, Amsterdam, Stockholm, Toronto, Miami, and more. I inherited some assets from my late husband. I am dating. I had kidney stone issues, vertigo, costochondritis, and plantar fasciitis. I am happily dating someone and renovating my home. Looking forward to retirement in a few years! I am so very grateful for the opportunity to experience all of it.

And I am so very appreciative to have had such a great checkup today of all days, World Metastatic BC Day.

May you all be well and thrive.

Rosamond, my Calico cat, was a breast cancer survivor for 8 years. >^.^ Dx 6/10/2013, DCIS, 5cm, Grade 2, ER+/PR+ Dx 8/1/2013, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/6/2013 Lymph node removal; Lymph node removal (Right): Sentinel Surgery 8/13/2013 Mastectomy; Mastectomy (Right); Reconstruction (Right): Silicone implant Hormonal Therapy 9/3/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/2/2014 Reconstruction (Left); Reconstruction (Right)

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