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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Nov 2, 2013 09:16AM dancetrancer wrote:

slg76, chemo with Herceptin is controversial for these very small tumors (< 6 mm) - so you will likely find varying opinions on whether it should be done or not. I will say since she is on the larger end of the small tumor scale, she may find more docs recommending chemo/Herceptin than not in her case.

Lumpectomy vs mastecomy has no bearing on whether chemo is needed or not. Chemo is done just in case any small cancer cells have already escaped into the bloodstream - so it makes no difference if you've done an MX or LX. If they have moved into the bloodstream already, the cat is already out of the bag, per se. Unfortunately, there is no way to know if that has happened or not - thus the reason chemo is given preventatively - to kill an possible escapees before they have a chance to grow.

If she does LX she will of course have to to radiation. If MX, she has a better chance of not needing rads. I did, but that was only b/c I had close margins after MX, which isn't all that common.

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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Nov 13, 2013 02:16PM swearp wrote:

Its a long time without any update from me. I hope everyone is doing excellent.

I might have pointed out before but still here is my update:

1) Back to work for past 2 months.

2) Had MX in July and my reconstruction surgery (Implants) is scheduled in Jan 2014

3) Had consulted Dr Valero from MD anderson and he does not recommend any tamoxifen or chemo, My MO at Stanford does not recommend anything either.

4) Last month I had mammogram for right breast which came out to be normal.

6) Every 6 months Mammo and MRI alternatively which I believe is pretty standard.

Again I wish everyone very a healthy life.

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Nov 13, 2013 04:08PM dancetrancer wrote:

Thanks for the well-wishes swearp - wishing the same to you and everyone else! I'm continuing to do well. 2 years still NED as of September 2011 (did BMX, chemo with Herceptin, rads, now Tamoxifen).

I'm still working on my reconstruction as I had to wait 1 year post rads, and I will need several more fat graftings to soften this hard rock on my chest. But I have had one surgery in July and am now seeing some softening starting. Yay!

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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Nov 19, 2013 01:01PM montana8000 wrote:

Congratulations Dancetrancer on continuing to do well! And to everyone else for being here as well. Though none of us obviously wants to be part of a cancer forum I know…Very grateful yesterday had my one year post diagnosis mammogram and zero issues. Am so happy!! And so very grateful!!!! 3 more Herceptin treatments and hopefully this will be it. I don't regret my decision at all to do chemo, rads and Herceptin. I have some issues (cholesterol, blood sugar,weight ) now that am trying to deal with with diet and exercise, so we'll see. They're not horrible yet, but will tip the scales to horrible, if I don't nip this in the bud by getting this extra weight off in the near future. I can't remember if I mentioned this before, but I really believe Ubiquinol is helping my heart during the Herceptin. Will continue it as long as I can buy the supplements. Ask your doctor if it's right for you. My echoes are so far looking good. Ubiquinol is the important part of coQ10. I take 200mg per day of pure Ubiquinol, not Ubiquinone. You can google it for more info, but here's a quick link: ubiquinol.org/ubiquinol-vs-coq... I wish everyone the absolute best!!!!

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Nov 21, 2013 02:08PM hopeful123 wrote:

Hello everyone. Great to see everyone doing fine. I had my 3 month check up last week and things look good up to now. I am nearly 2 years out (my IDC was 8 mm, did BMX, and chemo ACTH).

Dx 1/2012, IDC, Stage IA, Grade 3, ER+/PR-, HER2+
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Nov 24, 2013 09:47AM dancetrancer wrote:

So glad to hear you ladies are doing well! Here is some interesting info a good friend here passed on to me (thanks VR!). Dr. Slamon was involved in writing an up-to-date paper on HER2+ treatment. In it, he suggests chemo with Herceptin be considered for even the smallest tumors, including t1a. I cannot access the full article, but for those who can, I will include the link. I will also include the snippet that applies to us.

http://www.uptodate.com/contents/adjuvant-medical-therapy-for-her2-positive-breast-cancer?source=outline_link&view=text&anchor=H15#H15

"TREATMENT OVERVIEW — We recommend adjuvant chemotherapy plus HER2-directed treatment for all women with HER2-positive, node-positive breast cancer and for women with HER2-positive, node-negative tumors >1 cm in size. We also suggest adjuvant chemotherapy plus HER2-directed therapy in women with HER2-positive breast cancers smaller than 1.0 cm (ie, T1a or T1b) with no nodal involvement."

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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Nov 28, 2013 09:19PM rosamond wrote:

Thanks, dancetrancer. It's interesting, the careful choice of words do reflect the non-consensual nature of chemo for t1a..."suggest" as opposed to "recommend." Chemo was not suggested to me with my 3mm and 1.6mm tumors, nor was it recommended, reflecting the current state of affairs. Take my Tamoxifen every day and hope for the best! On a positive note, I have had no real SEs to speak of with Tamoxifen, and I have worked to reduce my recurrence risk since diagnosis by losing 25 lbs and working out several days a week to metabolize estrogen, as well as mindful, cancer-fighting eating and stress reduction. My 3 month oncology check-up is this week, and hopeful it will be uneventful!

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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Nov 29, 2013 01:52PM dancetrancer wrote:

Rosamond, I agree. And wow congrats on the weight loss and exercise plan - woohoo! Best wishes for your onco appt. :)

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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Dec 10, 2013 05:07PM Toastiecat wrote:

I'm (hopefully) enrolling in this trial for a Her2 vaccine, so I thought I'd share it here in case anyone is interested:

clinicaltrials.gov/show/NCT005...

rtonj.blogspot.com Dx 7/23/2012, DCIS, 6cm+ Dx 7/23/2012, IDC, <1cm, Stage IA, Grade 3, 0/8 nodes, ER-/PR-, HER2+ Surgery 8/1/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 9/20/2012 Herceptin (trastuzumab) Chemotherapy 9/20/2012 Taxol (paclitaxel) Surgery 12/16/2012 Reconstruction (left): Tissue expander placement Radiation Therapy 1/1/2013 Breast Surgery 6/1/2013 Reconstruction (left); Reconstruction (right) Surgery 7/2/2013 Reconstruction (left) Surgery 8/2/2013 Reconstruction (left)
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Dec 21, 2013 09:04AM rosamond wrote:

Just an update...all clear at 3 month onc check-up. Next up, repeat MRI on other breast next month to check for stability.

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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