Topic: < 5 mm HER2+ IDC...why NOT chemo???

Forum: HER2+ (Positive) Breast Cancer — Testing, treatment, side effects, and more.

Posted on: Jan 27, 2012 08:57AM

Posted on: Jan 27, 2012 08:57AM

dancetrancer wrote:

I've read thread after thread and all of the info, opinions are running together in my head.  I've only had since yesterday to absorb all of this (was up til 1 a.m reading).  I know this is a controversial topic, but I want to hear why you WOULDN'T recommend chemo for < 5 mm of IDC her2+ (mine is 3 mm).

I had my tests run at Emory (I was there for a 3rd opinion on radiation).  They found the IDC (3 other facilities missed it, including UAB) and tested it for Her2.  Transferred my results to UAB.  Found out I was HER2+ yesterday.

UAB told me yesterday afternoon, lets cancel your radiation, meet with onc to discuss chemo next week.  Go ahead and rip your rads stickers off.  So I did.

Today they call me and say, nope, we talked to the onc and they said chemo isn't warranted with your small cancer.  Come back in to get the marks drawn back on, b/c we want to start rads ASAP next week, you are already behind schedule.

So, I've got a call into Emory to see what their onc says.  WTF.  I'm so sick and tired of sleepless nights, changing opinions, thinking I'm going to die if I don't do chemo (OK, I know that's overreacting, but you all know how it goes) and convincing myself to do it, then I hear, nope, you don't need it.  I could do without this emotional rollercoaster, thank you very much.  Now I'm afraid to NOT have chemo and am paranoid about recurrence.

HELP talk me down off the ledge please!  (LOL, just kidding, but d*mn!) 

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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Jan 27, 2012 09:01AM groovygirls wrote:

I thought with the HER2 that you would have chemo. Did you have onco type testing done? Perhaps this number is low then no chemo.

BMX with immediate recon 9/12/11. Onco score 9: no chemo! Dx 7/6/2011, IDC, 2cm, Stage IIB, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jan 27, 2012 09:03AM dancetrancer wrote:

Oncotype is irrelevant, supposedly when you have a small cancer my size, especially if it is HER2+.  My docs said it was too small to test for onco.

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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Jan 27, 2012 10:00AM - edited Jan 27, 2012 12:35PM by TheLadyGrey

My understanding is that the HER+ status renders the Oncotype irrelevant because it pops the number up over the chemo threshold regardless of any other factors.

My invasive component was 6 mm split between ER-PR-HER+ and ER+PR+HER- cancers. I haven't seen a similar pathology on the board. I just love being special.

My oncologist said there was no way to break down the percentage of each flavor of cancer. Obviously, the HER+ part was something less than 6 mm.

Personally, I am skeptical that the measuring is as precise as we are led to believe. Since cancers this small are only recently detectable, it stands to reason that measuring them may be problematic.

I suspect that the standard of care will ultimately be that chemo with Herceptin is appropriate regardless of size. My sense is that we have landed in an area in a state of flux.

If you haven't yet, read my thread and BlairK's thread on this forum. Blair's wife had a less than 5 mm cancer and she is doing the same regime I am - TCH x 4 plus Herceptin for a year. I'm not going to tell you it is "doable" today as I am in the depths of digestive distress, but I have no regrets.

It is a tough call - how old are you?

Surgery 10/9/2011 Mastectomy: Left; Reconstruction (left) Dx 11/1/2011, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 11/11/2011 Herceptin (trastuzumab) Chemotherapy 11/18/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 2/29/2012
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Jan 27, 2012 10:06AM dancetrancer wrote:

Thanks so much Lady Grey - I had made it part way through Blair's by 1 a.m. last night, and still need to get to yours -definitely will do. 

I am 43, premenopausal, so one would think that would up the concern, no? 

I've copied the MD Anderson study and am dropping it off at my Ro's office today, expressing my concerns and asking her to talk to one of UAB's other MO's.  Still waiting to hear back from the Emory MO.  

I'm really not very comfortable with the no chemo recommendation, based upon the little that I've read so far.  Thank you so much for chiming in!  

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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Jan 27, 2012 10:19AM cookiegal wrote:

dt, you are right on the borderline for chemo with that tumor size....this is not my expertise, but perhaps you are a candidate for herceptin alone...or a trial of some sort...I do know people who went no chemo with exactly that diagnosis....

You deserve a cookie!
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Jan 27, 2012 10:26AM 37antiques wrote:

Going by the NCCH guidelines, they recommend chemo only after 1 cm.  Less than that depends on if the tumor has unfavorable features if you should have 5 years of hormone therapy or not.  Did you go through chemo with the first dx in July?  Maybe that plays into it too.  Just the HER2 status won't determine chemo or not, it's everything.  But I would think if you opted for chemo, they would have to do it, however, if you just had chemo, they would advise against it.  I hope that helps some.

IDC DCIS & Mets Dx 2/27/2007, DCIS/IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 3, 0/1 nodes, mets, ER+/PR+, HER2-,
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Jan 27, 2012 10:27AM moonflwr912 wrote:

Just to chime in, I had a 1.6 cm tumor that is HR2+ and was told that chemo was recommended. And, because of family history, that is how I lean as well.  Just another opinion, ( and you will find a lot of them on these boards, LOL) Take care and much love.  Do what feels right for you, after you have done research!

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 12/7/2011 Mastectomy; Mastectomy (Right); Prophylactic mastectomy; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 1/16/2012 Reconstruction (Left) Targeted Therapy 2/15/2012 Herceptin (trastuzumab) Chemotherapy 2/15/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/12/2012 Reconstruction (Left): Tissue Expander Hormonal Therapy 8/19/2012 Arimidex (anastrozole) Surgery 9/9/2012 Reconstruction (Left) Surgery 8/13/2013 Reconstruction (Left): Tissue Expander Surgery 9/3/2013 Reconstruction (Left) Surgery 12/12/2013 Reconstruction (Left): Saline implant; Reconstruction (Right): Saline implant
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Jan 27, 2012 11:02AM - edited Jan 27, 2012 11:06AM by voraciousreader

Dancetrancer... Please make an appointment with an MO and discuss your risks and benefits. The RO should NOT be in the middle. You also need to know your ER status, whiile you wait check out the NCCN guidelines. IMHO, I think they will be updating it soon... While there are no trials presently for that small of tumors...there is retrospective analysis that seems to be movind towards supporting therapy. By all means, get several opinions... Or even have them present your case to a tumor board. Ultimately, it is going to be a tough call... Only you will know the right answer once you meet with several doctors. Good luck.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 27, 2012 11:41AM - edited Jan 27, 2012 11:48AM by AlaskaAngel

This is really a tough one for medical providers to deal with because it isn't based on exact science until they have data indicating whether or not Herceptin alone is adequate, or maybe Herceptin plus hormonal treatment.

As just one example, moonflwr912 and I had the same general risk regarding tumor characteristics and family, but my reaction was exactly the opposite to hers. Had Herceptin been available at all when I was diagnosed, I would have done Herceptin. As it was, I would have done the alternative that was available at that time (ovarian ablation + tamoxifen). Those who are able to take lots of time off from work to deal with prolonged chemo treatments and recovery have the "luxury" of preferring it, and those who don't, do not. Doctors are stuck in the middle between me and moonflwr912.

What the NCCN authorizes is generally what insurance companies will cover, and trastuzumab is pretty spendy, with all the support services required for being administered in a facility.

There are indications in both directions -- as Voraciousreader says, some retrospective analysis seems to be moving toward supportive therapy, and at the same time, new information tells us that the combination of trastuzumab and lapatinib that is being used without chemo for some patients prior to their surgery is showing particularly good effect. It is hard for providers (and patients!) to know which direction to take.


P.S. I really believe that given the differing preferences of those like moonflwr and I, the docs should lean toward supporting the patient's preferences and not try to influence the patient one way or the other. Part of what each of us has to deal with in terms of the results is the strength that comes from listening to our own inner voice.

Dx 12/3/2001, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+, Surgery 1/3/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/12/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 9/10/2002 Breast Hormonal Therapy 11/15/2002 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 27, 2012 11:51AM bluedasher wrote:

Antiques, you may be looking at an older version of the NCCN guidelines. (I'm assuming NCCH was a typo and you meant NCCN.) The 2011 version recommends chemo and Herceptin from 0.6-1.0 hormone+ HER2+ node negative. The 2009 version recommended it for that size only if it was moderate/poorly differentiated or had unfavorable features.

Kind of strangely, for hormone- HER2+ 0.6-1.0 cm node negative, the 2011 guide says consider chemo and herceptin which is the same as the 2009. 

dancetracer, there is controversy about the treatment of HER2+ less than 0.5 cm. There is an active thread on this at the moment titled How Large does Tumor gets Chemo and Herceptin. The authors of the MD Anderson study suggest that even those less than 0.5 cm should get chemo and Herceptin.

In 2008 when my cancer was diagnosed, the oncologist said chemo/Herceptin was optional because it was less than 1 cm.   I decided to have chemo partly because I felt uncomfortable with how accurate the measurement was. The vacuum assisted biopsy I'd had had removed a good sized chunk of my small tumor so how could they be that sure of the size. Maybe the tumor that now measured 0.9 had been slightly over 1 cm before biopsy. A millimeter just isn't that large. Then the MD Anderson study came out while I was in chemo and reinforced the decision I'd made. 

With my cautious engineer nature, if I was in your shoes, I think that I'd be asking myself how sure they are that the IDC was 0.3 cm of the whole 6 cm in tissue when the tissue had handled by 4 pathologists before it was noticed? 

Don't let them push you into making a snap decision. It is worth a few days to talk to a couple of oncologists and consider this. 

The whole world is a narrow bridge and the main thing is to not fear. Dx 9/2008, IDC, <1cm, Stage IB, Grade 2, 0/5 nodes, ER-/PR-, HER2+ Targeted Therapy Herceptin (trastuzumab) Surgery Lumpectomy: Left Radiation Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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