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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Jul 15, 2012 11:07AM weety wrote:

The "C" in TCH is Carboplatin which is also pretty harsh. 

Dx 7/17/2009, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR-, HER2+ Surgery 4/19/2010 Prophylactic ovary removal Surgery 4/10/2013 Prophylactic mastectomy: Right Hormonal Therapy Femara (letrozole) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left
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Jul 16, 2012 11:34AM Lmont79 wrote:

When we met with Dr. Slamon and asked about TH instead of TCH he also, like Md Anderson, said the data from Dana Farber wasn't concluded yet and so it was unknown if TH would have enough synergy for the Herception. I did have a very highly respected medical onc tell me however, that she would recommend the TH instead of TCH because she felt that the info Dana Farber had so far looked promising. Also, however, drift way, it is worth noting that my invasive spots were 1.65mm and .8mm which is significantly smaller than yours....not sure if that was reason for the one m.o recommending TH? I am leaving this am to go to MD Anderson to see a m.o and that is on my long list of questions...will let you know if they have any more current info on that. I fly home Thursday

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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Jul 16, 2012 02:11PM dancetrancer wrote:

lmont - thanks for the update and safe travels. Smile
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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Jul 16, 2012 04:48PM hopeful123 wrote:

Lmont- good luck with you visit. I will be in the 8th floor getting number 5 infusion of Taxol tomorrow:) Do let us know what they tell you. It would be very interesting to see the opinion at MDA.

Dx 1/2012, IDC, Stage IA, Grade 3, ER+/PR-, HER2+
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Jul 18, 2012 02:08AM - edited Jul 18, 2012 06:08AM by Driftway

dance and laprofessor - how did you decide on TCH? Here in the east they feel that dose dense AC-TH and of course TH are better tolerated and recommended for the grey area sub 1 cm.
Did the 3-6% risk of permanent alopecia of taxotere get trumped by the approx 1-4% risk of cardiac on acth?
Lmont - thanks for asking Slamon my very question on TH, and his answer is what I thought, it's too early to recommend.

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Jul 18, 2012 09:56PM dancetrancer wrote:

driftway - TCH was recommended to me b/c I had rads BEFORE chemo (this is unusual, long story), and you can get something called radiation recall when you do chemo after rads (flare-up of rads burn).  Rads recall is worse with ACTH than TCH.

Even if I didn't have that issue, I would have chosen TCH over ACTH b/c of the heart issue.  Yes, I was very fearful of the permanent hair loss risk with Taxotere, BUT, I used cold caps to save my hair - so that took that risk away.   

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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Jul 23, 2012 09:50AM jpmercy wrote:

Hi there just came across this I am 32 dx at 30. Had 2 mm micro invasion same as you tons of oncs said do nothing and one said tch I landed on doing the th I felt I had BMX and I was comfortable with the research thus far with th I even considered h alone but my onc really said whats the point if your going to do it do it right. Anyway I found the th very doable I used cold caps did t lose my hair and had intestinal diareah problems and a sour stomach throughout and was tired but I worked a d raised my 8 month old baby thud 12 weeks. So it s definatly less toxic. I think it comes down to your comfort level I was scared of the long term effects muscle aches bone issues and things associated with the tch I found for me th was the happy medium and with BMX I felt I was doing what I needed too! Hope this helps like everythi g In bc it's a personal decision as to how much or how little treatment to persue pm me if you would like!

Jennifer 7/27/10 DCIS 3cm Grade 3 w/ 2mm IDC found after BMX 9/10 ER/PR+ HER2 neu +++ Surgery 9/3/2010 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Targeted Therapy 10/12/2010 Herceptin (trastuzumab) Chemotherapy 10/12/2010 Taxol (paclitaxel)
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Jul 25, 2012 01:04PM Jinkala wrote:

I'm not sure I quite fit the criteria.  My IDC was only 3.5mm but because of the Paget's, it is considered as involving the skin so it is classified as a t4b instead of a t1a.

My Oncologist said that the size was irrelevent when it comes to a grade 3 Her2+ tumor and she wants me to start the TCH as soon as possible (within the next two weeks).  She also would have been willing to put me on Herceptin only or even refuse both but she was pretty persuasive in explaining the benefits and risks of the options.  She said there were other options but felt this was the safest one that was still agressive enough.

I also have the added complication of being type 2 Diabetic so we will have to manage that as best we can as well. 

I'm in the US, age 47, dx this year, Grade 3 3.5mm t4b IDC, ER/PR- HER2+ - Recommendation TCH 6 treatments 3 weeks apart, Herceptin for a year 3 weeks apart.  I will probably be starting in a week or two.  (I'm still in the appointment setting up phase for all the scans and tests.) 

Age: 47 Diagnosed Type 2 Diabetes May 2012 Dx 3/22/2012, Paget's Dx 4/2012, DCIS Dx 6/26/2012, IDC, <1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2+ Surgery 6/26/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left Targeted Therapy 8/10/2012 Herceptin (trastuzumab) Chemotherapy 8/10/2012 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jul 25, 2012 04:28PM chachamom wrote:

Hello, Jinkala! Sorry you have been inducted to the club no one wants to join. It sounds like you are in good hands.

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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Jul 26, 2012 08:55AM dancetrancer wrote:

Welcome Jinkala!  I believe you are in the right place, even though the staging is different.  If you had only had the Pagets, would they have still recommended chemo?  If not, then it appears it is the 3.5 mm Her2+ IDC that is driving the chemo decision.

Sorry to hear about the diabetes, that could make it more challenging.  I developed prediabetes from the steroids.  We are hoping it goes away in time (and of course watching my diet/exercise).  Hope all goes well for you!!!   Keep us posted!  

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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