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

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 27, 2012 09:57AM

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! 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 29, 2012 08:38PM fluffqueen01 wrote:

Also, the dose dense herceptin side effects have bothered me more than anything. They started it at a 30 minute infusion and lengthened it to 90 minutes which helped. He also said I could come in once a week and get it since I tolerated that well during chemo, but I just couldn't start going there weekly for 9 more months, so I have just stuck it out. I have some queasiness off and onfor a couple days after infusion, some intestinal issues, and am really tired. Not sleepy, just worn out.

Dancetrancer, you will get an echo every three months to monitor your LVEF, as herceptin can case issues. Mine started at 60-65, dropped to 50-55 and has held. Still normal, but on the low end.

The only neuropathy I think I might have is that my hands get cold easily. While on chemo, my hands and feet were like ice and my husband would put two hot water bottles in bed at my feet at night...so that I wouldn't stick my freezing toes on him! I had, and still have some joint pain, but it is mild and probably tamoxifen related now.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jan 29, 2012 08:47PM suzieq60 wrote:

fluffqueen - once you finish herceptin your hair growth will accelerate - mine did.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jan 29, 2012 10:38PM fluffqueen01 wrote:

susie...Yahoo!!!!!

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jan 30, 2012 12:59AM suzieq60 wrote:

It is good, but I now have a mass of curls that I can't control - didn't have them before.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jan 30, 2012 08:10AM - edited Jan 30, 2012 08:13AM by Maja2213

Dancetrancer - I definitley had no "C" drugs.  Looks like Fluffqueen had the same treatment as me, so you can see it is being used out there.  As of Dec 2010 (things change so quickly in the BC treatment world) it was still a rather new idea to do Taxol and Herceptin only.  I was offered TCH also if I felt more comfortable going with something "tried and true." 

Fluffqueen01 - Yeah I was trying to get so much info in - taxol can be given every 3 weeks like you say.  Its just more even and a lower dose each time (hopefully leading to less bad reactions and less neuropathy) to do it once a week.  I know I was told that taxotere on the other hand, works differently on the cells so even though it is related to taxol, it is usually the one given with other chemo drugs in the three week cycles.  As for your hair, I hope it's herceptin because you'll be done soon.  It could, however, be the tamoxifen.  I don't know when you finished taxol, but I had very thick and curly hair (only a bit wavy before) 7 months after last taxol.  The last area to fill in was at the temples and my part (when I can find it in the curls) starts at least an inch further back than it used to.

And the curls -- I had wavy hair before so it would hold a curl if I rolled it damp.  Now, well, my MO calls me Shirley Temple.  Some people have told me the curls will grow out and I'll have my old hair back but it has been growing in for 10 months now and is as curly as ever.  It's easier to take care of.  

  

Dx 10/1/2010, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Jan 30, 2012 08:37AM - edited Jan 30, 2012 08:38AM by dancetrancer

Maja - I looked up the Dana Farber trial with Dr. Winer to learn more about it.  I also did some "googling" of Dr. Winer and found an interview with him where he shares his thoughts about treatment options for < 1 cm node-negative HER2+ women.  I know that he as well as many others I've read about feel no treatment at all (except Tamox if ER+) is usually advisable for < 5 mm, but since I am pretty anxious about recurrence, I'm still leaning towards the chemo side of tx, albeit a "softer, gentler, chemo"...if I am able to find a local doc who agrees.  

Medscape: Although the criteria for use of adjuvant trastuzumab in high-risk HER-2-positive diseases are well defined, many clinicians struggle with whether to give trastuzumab to lower risk patients, such as those with small hormone receptor-positive tumors who may not require cytotoxic chemotherapy. What has been your approach to such patients, and how can we develop "softer and safer regimens," as described by Dr. Martine Piccart at ASCO 2006?

Dr. Winer: This is a difficult issue, and I think that it's one with which many clinicians have struggled. It's unclear what to do for patients who have relatively low-risk disease, such as subcentimeter node-negative tumors with either positive or negative hormone receptors, or hormone receptor-positive node-negative tumors of 2 cm or less. The NSABP, Intergroup, and HERA trials did not include any patients with tumors less than 1 cm, and the Intergroup trial only included patients with estrogen receptor-positive, node-negative tumors if they were greater than 2 cm. The NSABP study included node-positive patients only. The concern with regard to trastuzumab treatment is that rare, but serious side effects, such as cardiotoxicity, can be associated with it. Generally speaking, I have been cautious about giving trastuzumab to this low-risk group, and I think that it requires an in-depth discussion with the patient. I won't say that I absolutely haven't done it, but by no means do I believe that it's the standard of care at the moment. These are the clinical settings for which we need data on kinder and gentler regimens, such trastuzumab monotherapy, trastuzumab in combination with hormonal therapy, or trastuzumab in combination with single-agent non-anthracycline-based therapy, such as single-agent paclitaxel. There is, of course, the non-anthracycline-containing regimen evaluated in BCIRG 006.[3] Although the docetaxel, carboplatin, trastuzumab (TCH) regimen represents an alternative to anthracycline-containing regimens, TCH is also associated with fairly significant toxicity and is not a regimen that I would tend to suggest for a low-risk patient population.
 

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 30, 2012 09:43AM bluedasher wrote:

Send some of those curls my way please! I had natural curly hair pre-chemo and it came back very straight. It's hard knowing what to do with straight hair when you've always had curly and vice versa. I liked that I could wear my curly hair very short and it would go into something that looked like a "style" with a quick brushing. Other than that I have no complaints about the returned hair. It grows now at normal rate (Herceptin did seem to slow it down some or perhaps it just takes a while to get going at full speed after chemo) and if anything I seem to have less gray than before.

Back on topic, for <1cm or even all Stage I, a "kinder and gentler regimen" makes a lot of sense to me. It would be a better trade off of risk vs gain for tumors where recurrence risk was lower. Maybe Herceptin alone or with Taxol or maybe the 4 cycle Taxol or Taxotere with Cytoxan.

For someone like DanceTracer, if it was just Herceptin, it might not be necessary to wait to start rads since they do rads and Herceptin at the same time.

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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Jan 30, 2012 10:11AM dancetrancer wrote:

BlueDasher, thanks for thinking of that idea of Herceptin only with concurrent rads.  I wonder, though - will insurance pay if Herceptin is not given with chemo as is the standard of care?  

Not that it matters for me, though.  I just received an email from Emory.  No chemo/Herceptin recommended.  I was told the onc was too busy to talk to me, let alone the staff.  They said she said I was told no chemo previously during a lengthy conversation (I talked to her for about 5 minutes on the phone previously, but this was BEFORE my HER2 results were back, and I was told the recommendation may change if Her2 came back positive.  I have not talked to her since my results came back positive Thursday).  They told me I am in good hands with UAB.  I fear I have alienated them by asking too many questions and/or asking for results of my tests too much. Frown  Obviously, I am a "problem" patient.  

Ready to just give up and do what I'm told. I don't have time to delay my treatment with rads any longer (you know how it takes many weeks to get all of your paperwork to a new doc, actually get an appt, etc.).  Maybe this is a sign that I don't need it, and I should just roll with it.  I can't regret a decision in the future if I never had a choice. 

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 30, 2012 11:52AM Maja2213 wrote:

I can add one thing that my MO said that may make you feel better about no chemo.  With such a small tumor it is hard to do all of the testing necessary.  You run out of tumor (which is why most trials are done on larger tumors.)  Her 2 neu is on the outside of the cells.  DCIS is usually (I think he said usually) strongly Her2 positive.  Sometimes if the small tumor is next to the DCIS (my tumor was like a cherry on top of a DCIS) the tumor may test as being Her2 positive but its actually reading the DCIS Her2.  It is really hard to test small tumors accurately and you said you had 4 path reviews plus a FISH.   You probably have run out of tumor.  You probably will be far more responsive to hormone therapy than me, you have less breast tissue for a recurrence, and radiation really does a good job cleaning things up.  I believe the newest studies suggest radiation is even more effective than they thought.  Good luck.

Dx 10/1/2010, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Jan 30, 2012 11:57AM dancetrancer wrote:

Thanks for the additional information and encouragement Maja.  

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 30, 2012 12:28PM - edited Jan 30, 2012 12:31PM by AlaskaAngel

Doctors are still very much caught in the middle on this question because the research hasn't been done. We want definite answers and there still are none either way. The information we have now to work with is not balanced, because most of it is about the results of trials using chemotherapy. One can read five, ten or more articles about the value of chemotherapy and psychologically since there are so few in comparison about no chemotherapy for it that the impression one has becomes overwhelmingly in favor of more therapy because certainty feels better than uncertainty.

The only new info we have is that the use of neoadjuvant trastuzumab, and neoadjuvant trastuzumab and lapatinib, are showing good results as single therapy for HER2 positive patients. The trial for use of trastuzumab alone for patients who are the most likely to be postmenopausal (over age 70) is in progress but it will be a while before we have info from it, and even then it would be about postmenopausal use.

In terms of insurance coverage for trastuzumab, there are others who have done trastuzumab alone in this situation and it would make sense to make inquiry about that rather than working on pure assumption. Doctors offer the standard of care, which is uncertain here, and some patients have had to refuse the chemotherapy in order to get authorization for the trastuzumab alone.

The advantage at this point in time for someone with early stage bc would be primarily one of time, in that a diagnosis of very early stage bc may allow more of a window of time for more definite information to develop and for newer treatment regimens to be offered. It also has to be said that doing the maximum treatment at this point has its minor disadvantages, as well as no absolute garantee that it will work. Perspective is very individual as to what choice makes real sense. At the time I was diagnosed, the alternative of trastuzumab was not available to me with or without chemotherapy because the trials had not been completed (although had I known about it, I probably could have received it "off-label").

I firmly believe that in this situation, patients should be encouraged to do what they feel comfortable with doing, in either direction. And I believe that is what doctors are trying to offer. They offer standard of care, usually chemotherapy plus trastuzumab. If it is refused, they recognize that trastuzumab at the very least has some activity, and can be combined with other medications.

A.A.

Dx 12/3/2001, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 1/2/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/11/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 9/9/2002 Breast Hormonal Therapy 11/14/2002 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 30, 2012 02:33PM suzieq60 wrote:

dancetrancer - how do you know if that doctor even has your new results?

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jan 30, 2012 02:58PM SusanHG wrote:

dancetrancer-not sure if this was brought up or not, but since it has been a few months since your surgery, is it too late for chemo? isn't there a window of opportunity?  I have been thinking a lot about your situation and just wondering if this was discussed.

Surgery 1/19/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 1/20/2011, IDC, <1cm, Stage IA, Grade 2, 0/6 nodes, ER-/PR-, HER2- Surgery 3/14/2011 Lumpectomy: Left Radiation Therapy 4/14/2011 Breast, Lymph nodes
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Jan 30, 2012 03:17PM dancetrancer wrote:

susieq, I don't.  I wrote back to the nurse and told her I had not spoken to the doctor since hearing my Her2+ results.  No response.   I'm tired of trying.

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 30, 2012 03:19PM dancetrancer wrote:

SusanHG, that is a question I don't have an answer to yet.  I officially get to meet with my local onc (not the one who is 3 hours away and originally ordered the test) on Thursday.  It is one of my questions. 

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 30, 2012 05:52PM - edited Jan 30, 2012 05:54PM by Sugar77

Hi, I recall my onc telling me the window was up to 12 weeks from surgery for chemo. My surgery was Sept. 25th and I started chemo on Dec. 7th. I saw the medical onc for the first time on Nov. 30th and he stressed I had to start right away in a week's time. Maybe with Herceptin the window is different, I'm not sure.  Glad to hear you've got that on your list dancetrancer.  All the best.

Surgery 9/24/2009 Lumpectomy: Right Dx 10/27/2009, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 12/6/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 12/5/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/26/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 30, 2012 10:10PM fluffqueen01 wrote:

Regarding hair....I had fairly thin, fine, straight hair before chemo. You can see it in the picture. I was hoping so badly for curls, but no.....the back and sides have some wave but are generally straight. The thickness doesn't feel too bad, but on the top scalp, it is very thin and stick straight. So bummed I didnt get curls.

Dancetrancer...the taxol/herceptin combo is fairly common in Europe, I believe. Taxol is also a recommended chemo for metastized BC. It is a little off label this way. I try to tell everyone with small turmors to ask about it as it was very manageable.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jan 31, 2012 06:18AM dancetrancer wrote:

Thanks fluffqueen.  Sounds like we have identical hair types...poker straight all my life, thin and fine.  Bummer you didn't get some curls, b/c if you are like me, you have always wished for just a bit more volume!  

Thanks for the additional info on Taxol.  That would be my first choice if I am given a choice.  BTW, I did an informal "survey" of my own on the T1a ladies (only those 5 mm or under)  I have found on bc.org here (by looking through this post and several other related posts).  I only went back a few years, and I know this has no statistical significance b/c those who get treated are indeed more likely to come and post here, but for what it's worth:

  • 4 had no treatment and recurred with METS (initial dx ranging from 2004 to 2010)
  • 3 had no treatment and have not recurred yet (one dx 2007, two dx 2010)
  • 10 have had treatment or are currently undergoing tx, no recurrence yet (ranging 2008 to 2011) 

Just so happens that 4 recurrences with METS/17 total cases = ~ 23% recurrence rate.  Completely unscientific, I know, but interesting...how it matches one of the studies mentioned

 Of the treated group:

  • 4 had taxol plus Herceptin
  • 3 had TCH 
  • 1 refused chemo but doc agreed to Herceptin only
  • 1 had AC-TH
  • 1 is still deciding on what kind of chemo (two onc's recommended it)

I wonder if the reason I am getting no's on further treatment is because I am going to big NCI centers, and they strictly follow the NCCN guidelines, rarely varying to do anything "off-label" b/c there is no evidence for it yet.  Just a guess on my part.  

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 06:51AM voraciousreader wrote:

Dancetrancer...I am SO impressed with your leaving no stone unturned in your effort to find an answer!  Perhaps you would like to change your name to "VoraciousReader II."  Kiss 

I also want to remind you once again, if it makes you feel any better, unfortunately, there are many women who, for one reason or another, fall into the abysmal "gray area" for treating their tumors.  Many women with ER+ tumors who have intermediate OncotypeDX scores are in the "gray area."  People who have rare tumors, like mine, where there is little research on treatment, fall into the "gray area."  It's really a tough call to make when there isn't crystal clear evidence guiding you....I wish you and all the other sisters who fall into THE.GRAY.AREA...well.  I really think what it all comes down to is how risk adverse you are, and how well your general health is.  I also think you need not only to trust yourself, but find an MO's whose judgement you trust and guides you. That will, IMHO, bring you out of the "gray area." 

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 31, 2012 06:53AM - edited Jan 31, 2012 06:55AM by Liz08

Dancetrancer-

with cancer it's never black or white & our pathelogy falls into a gray area since there haven't been many studies done on "microinvasive Her2+++" tumors like ours. But the few studies that have been done give us a favorable diagnosis, so that's definitely good news as far as cancer concerned.  We all have a unique pathelogy so my advice, seek out at least 3 opinions from highly respected oncologists, even if you have to travel long distances.   Not all her2+++ tumors are warranted Herceptin especially tiny ones (less than 5mm) & if you're node negative.  When I got diagnosed in 2007, my IDC was "less than 1mm in its greated dimension". I got many consults, including one from DR. Winer (From Dana Farber in Boston) & he too agreed no chemo & no herceptin.  Another forum you should visit is one the I helped start, it's called "Microinvasive DCIS that is her2+++". You can also look up the forum under my name since I've posted there many times.  For some reason my browser won't let me copy & paste the link. The cancer world is complicated & unlike any other world you have experienced but you WILL get through it just like the rest of us did.  Hang in there & reach out when you need to.

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes
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Jan 31, 2012 07:31AM dancetrancer wrote:

Thanks so much voraciousreader!!!  I am honored you would consider me to be VR#2! SmileSmileSmile  And again, thank you for the empathy regarding the plight of those of us "in the grey".  I never thought I'd have such anger towards a color in my life!  LOL!!!

Lizzy, thank you for your response, and yes, I have perused that forum.  I did find some t1A's posting over there, which was very helpful.   From my understanding Tmic is defined as a tumor 1 mm or less.  As it gets a bit bigger, it gets a bit "greyer" as to the risk, albeit my risk with a 3 mm is still not terribly high, and is definitely less than someone with a larger tumor.   I know that the guidelines show that < 5 mm do not require chemo/Herceptin...it's just unnerving when I see at least 10 members here who have indeed had it recommended and proceeded with treatment.  Thank you so much for the encouragement!!! 

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 07:38AM voraciousreader wrote:

Actually, before being diagnosed with cancer, I wasn't fond of gray.  But now I like the color gray...I welcome growing old and gray!Kiss
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 31, 2012 07:46AM LilliM wrote:

Hi Dancer:
It's Lilli from FGP. I've been following your threads here. It's been a major learning experience. So appreciate the research you and the other members have done.

What I find puzzling is why the docs at Emory ran the HER2/neu in the first place when they knew in advance, in the event it came back positive, they wouldn't alter your treatment plan?

I think your observation about the NCI Centers strictly following NCCN guidelines is a good one. It was the first thought that occurred to me yesterday after hearing your onc at Emory sent you back to UAB telling you NO Herceptin/chemo.

The fact that other ladies with your Dx have received treatment should be encouraging though. Apparently, there are docs willing to Rx off-label. It may just be a matter of finding one.
Lilli

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Jan 31, 2012 07:50AM Dejaboo wrote:

This is a great thread.

I hate the Grey area.

You can add me to your Stats as one that did not have treatment ( I like Numbers) DX in 2008. 

T1a, Not Microinvasive - but close 1.2mm, Her2+ Grade1. No treatment Ned almost 4 years later

statistics are just a group of numbers looking for an argument Dx 3/7/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2+
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Jan 31, 2012 08:15AM - edited Jan 31, 2012 08:16AM by dancetrancer

Ah, ha, ha, ha VR, I LOVE IT!  So true!!! 

Lilli - great to see you here - that is SOOOOO my question!!!  I posed it to the nurse who is the "go between" (aka guard) between me and the doc, but she did not return my email.  It is unbelievably frustrating, and I don't think I will ever get an answer back from them.  Maybe it's done just so they have it for research numbers.  If so, hmmmm...will my insurance be billed for that?  Oh, I've become so cynical.  Really everyone, I'm not a nasty, vindictive person by nature.  This whole cancer experience has morphed me into someone I really don't like somedays. However, I know it is not the core of who I am.  The stress is just bringing out the worst in me. 

Dejaboo - you've been added, and I started another thread to gather stats like ours - hopefully it will help other future patients suffering to make this same agonizing decision.  Thank you for letting me know!!!  And YAAAAAAAAAY for NED! 

calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+ 

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 11:24AM Kim137 wrote:

I was diagnosed with multifocal, grade 3 DCIS. I had BMX. The sentinel node had micro-metastasis, but other nodes were negative. Although the original pathologist did not locate the invasion, it is "understood" that there is a small invasive component. I am also Her2 positive (+++). I am receiving 8 Dose dense chemo treatments, 1 year of Herceptin and 6 weeks of radiation. My RO consulted with Emory on that decision. Although rads is rarely needed for micro-invasive DCIS and mastectomy, my tumor was aggressive and they felt warrants rads. I was devastated to go from a "Stage 0, needing no further treatment" to a Stage 1b and we're throwing everything we have plus the kitchen sink at it!! I was 31 at the time of diagnoses and I feel that has played a huge part in my treatment plan.

DCIS w/ micro invasion. Micro mets found in sentinel node. Dx 9/9/2011, DCIS, 6cm+, Stage IB, Grade 3, 1/16 nodes, ER+/PR-, HER2+ Surgery 9/9/2011 Lumpectomy: Right Surgery 9/30/2011 Lymph node removal: Right, Sentinel Surgery 10/13/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/17/2011 AC + T (Taxol) Targeted Therapy 1/5/2012 Herceptin (trastuzumab) Surgery 4/25/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Hormonal Therapy 5/3/2012
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Jan 31, 2012 11:36AM dancetrancer wrote:

Kim, your case is really unique.  Don't you love being special? Tongue out (sarcasm, of course,...I completely understand!)  How did they know you were HER2+?  Were they able to test the micrometastasis in the nodes?  I assume they are radiating your nodes?  Wow, you have been through it.  Thank you for sharing your story. 
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 02:17PM dancetrancer wrote:

Thought you all might be interested in a podcast where one of the authors from the MD Anderson study is interviewed:

www3.mdanderson.org/streams/Au... 

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 03:02PM TheLadyGrey wrote:

Dancetrancer, here is a previously posted summary of what my oncologist said at our initial consultation - maybe something here will be helpful.

1.  HER2+ is dispositive.  You have it, you get adjuvant therapy.  She didn't out and out say that (see below) but that was my takeaway.  I raised the 1-5, 5-10 mm treatment issue, throwing around numbers on the distinction, secretly hoping to trick her later by pointing out the 6mm couldn't possibly be 6mm of HER+, and, therefore, I was on the lower end such that chemo is unwarrented. "Yes," she said, "that was our study." Well shit -- that was my the centerpiece of my argument.  Unlikely that I can use it to successfully undermine her recommendation. 

2.  My tumor is scattershot -- the ER/PR+/HER2- bits are laid back, pot smoking, sunset loving, Bruce fans who might get around to checking out the surrounding territory someday, while the ER-PR-HER2+ bits are weaponizing to take over hostile contiguous countries.  We didn't talk about the DCIS.  

3.  Breast cancers are like that -- a bit of this, a bit of that.  The pathology reports reflect the distinct characteristics that amount to action items. My pathologist communicated that he didn't like the weaponizing bits AT ALL by phrasing things a certain way -- I'm a student of words and I had to agree as the word choice and level of detail struck me as odd (seeing as how I have SO MUCH experience with pathology reports.)  "Why are there so many 'negative, unfavorable, suboptimal, FISH Panel prognosis: unfavorable" comments?  She knows the pathologist and said he was making it clear he doesn't like the look of it.  

4. My invasive component is 6 mm, some of which is the laid back bit and some of which is that weaponizing kind.  Both kinds were added together to reach the 6 mm number, although I don't think it is nearly that simple.  There is no way to break that down to what percentage is what, and if there was she wouldn't trust it and would recommend adjuvant therapy because of the HER2+.  (You will start to see a theme here.)

5.  With my profile, my risk of recurrence is 15-20%.  In general, the risk of recurrence is 10-15%.  I'm not sure why mine was pegged higher.  

6.   Adjuvant treatment reduces my risk of recurrence to zero (seriuosly, she said that). The chemo dials down the reactivity such that the Herceptin can kill the cells.   

7.  She recommends TC (Carboplatin), 4 infusions every three weeks, and Herceptin 1x/week for six weeks then monthly to complete one year. Because Herceptin is an antibody protein, she likes to get the blood level up quickly hence the 1x/week for 6 weeks regimen -- don't you just love the way I said that like I know what it means?  I hadn't seen the 1x/week for six weeks protocol before.  

8.  Neulasta is given the day after each TCH infusion.  Bone pain is generally felt only after the first one and can be handled with Advil. No mention of Claritin and I forgot to ask. Overweight women are more likely to experience bone pain. 

9.  Side effects:  

a.  Nausea is licked.  If drug A doesn't work, drug B will.  Drugs are taken on a preventative basis. 

b.  The short treatment period puts my risk of neuropathy, eye problems, and finger/toe problems at zero.  

c.  Fatigue:  week one, 75%, week two 85%, week three 90%/normal, then back down with the next treatment.  The best antidote is to exercise -- I think exercise cures pretty much everything so no need to sell me.  

d.  Cold caps work.  Like for real.  They have a cold cap "Angel" who spreads the word and and helps women use them properly.  

10.  I need not be concerned about cardiac issues.  The statistics are international so the level of care is uneven, and overweight women are more likely to experience a decrease in function which rights itself when treatment is over.  

11.  The ER+ bits, she placed at 3-4 mm (do the math -- I'm down to 2-3 mm of HER+, added to together), but size didn't really matter as her recommendations would be the same:  Tamoxifin for two years then the one that starts with an A for three, reducing my 5% risk of recurrence to zero.  That treatment will also reduce the risk of a new cancer on my right breast.

12.  I asked whether the TCH would wipe out any cancer that is my right breast.  She did answer me, but I have no idea what she said.  

13.  Oncotype scores are for ER+ borderline cases where chemo is a question mark, but HER2+ calls for adjuvant therapy (remember that theme?) so scoring isn't relevant.

14.  Cytoxan is not FDA approved for TCH and there isn't much SE difference between it and carboplatin.  I'm skeptical about that, but I think that adherence to protocol in the absence of a compelling reason to deviate is one of the prices paid for being treated by a national name.  

15.  It is acceptable to wait 84 days after surgery to begin treatment.  I have no idea why they came up with that totally random number.  

16.  Lymphovascular invasion didn't matter to her as the tumor is HER2+ so adjuvant therapy is appropriate in any event (that theme again....)

17.  The weaponizing HER+ part of the cancer is ER/PR- so hormonal therapy is not helpful.   

18.  There have not been any trials for Herceptin only.  She said that after Herceptin was approved, the researchers at MD Anderson went back to study the outcome in small HER2+ tumors that did not receive adjuvant therapy and were shocked at the high rate of recurrence.  It had already been established that treating women with HER2+ tumors greater than 1 cm with chemo plus Herceptin resulted in markedly lower rates of recurrence, so that protocol was adopted for smaller tumors where adjuvant therapy is recommended. WIth chemo + Herceptin, the risk of recurrence with small HER2+ tumors dropped from 10-15% to near zero. 

Don't know how to fix the text so it is all plain -- I'm not trying to emphasize or deemphasize the last few items! 

 

 

Surgery 10/10/2011 Mastectomy: Left; Reconstruction (left) Dx 11/1/2011, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 11/12/2011 Herceptin (trastuzumab) Chemotherapy 11/19/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 3/1/2012
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Jan 31, 2012 03:30PM dancetrancer wrote:

TheLadyGrey wrote:
"Dancetrancer, here is a previously posted summary of what my oncologist said at our initial consultation - maybe something here will be helpful.
1. HER2+ is dispositive. You have it, you get adjuvant therapy. She didn't out and out say that (see below) but that was my takeaway. I raised the 1-5, 5-10 mm treatment issue, throwing around numbers on the distinction, secretly hoping to trick her later by pointing out the 6mm couldn't possibly be 6mm of HER+, and, therefore, I was on the lower end such that chemo is unwarrented. "Yes," she said, "that was our study." Well shit -- that was my the centerpiece of my argument. Unlikely that I can use it to successfully undermine her recommendation."

So she was one of MD Anderson authors?  And she basically said, in so many words, I don't care how big it is, if it's HER2+, we recommend treating it?  I think that is what you are saying here, but I want to make sure.  That's basically what the author said in the quoted article above that I posted.  

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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