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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 28, 2012 04:58PM whippetlover wrote:

Hi dancetrancer. You are most welcome. There are lots of issues with validity in many of the studies as there are such small numbers of women diagnosed with < 1cm her2+ breast ca. I always look carefully at the nos of women and the length of the follow up. The retrospective study that I included in my first post is quite longitudinal and you will notice that after a few years the her2+ women's recurrence rate did flatline. Getting through those first years without recurrence is critical for us her2+'s. You are doing very careful research and whatever your decision is, it must be yours alone so that you are at peace with it. Kindest wishes.

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Jan 28, 2012 05:00PM - edited Jan 28, 2012 05:01PM by dancetrancer

Thanks Sue - I have seen that one.  I am looking for ones that separate out T1A from T1b, so that is why I was so excited to see the most recent study I posted - even though I recognize the small sample size makes it hard to draw conclusions from, as Beesie had pointed out in the other study and whippet lover just pointed as well. 

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 28, 2012 07:04PM dancetrancer wrote:

This is for whoever it was said Herceptin only decreases your risk by 5%:

"Even if none were to occur, a 50% reduction in risk of disease recurrence achieved by adjuvant trastuzumab would still lead to an absolute benefit in the range of 4% to 5%. For many women and their physicians, this benefit would justify the use of adjuvant trastuzumab." 

Source:  www.hemonctoday.com/article.as... 

This apparently is the confusion:  absolute vs relative risk.  If risk with < 1 mm tumors is say 8 to 23% over 5 years, then a 50% reduction would decrease your absolute risk by 4 to ~ 11%.  I think this is where the 5% number probably came from.  

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 28, 2012 08:24PM AlaskaAngel wrote:

One of the difficulties to keep in mind in considering the differences between T1a and T1b henceforward is that what until very, very recently were the T1c's are now redefined for any study result purposes (given that it takes time to advertise, enroll, administer the therapy being studied, and then evaluate the data)  So the groups you are seeing listed as T1a and T1b in the NCCN guidelines are not the the same populations of T1a and T1b that would be showing results in current completed studies.

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 28, 2012 09:40PM Bev_22 wrote:

I'm sorry you have all the confusion on the right treatment.  Iam from Alabama and have tx at UAB also.  Ihave ER+  PR+  Her2+  IDC and ILC.  I am now taking Herceptin.  Only two infusions so far.

I would like to talk to you sometime.

Beverly

Bev Dx 11/21/2011, IDC, 4cm, Stage IIIB, Grade 3, ER+/PR+, HER2+
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Jan 28, 2012 09:54PM Beesie wrote:

AA,  your statement is confusing to me.  Are you saying that the definitions of T1a, T1b and T1c have changed?  

dancertrainer, I looked at the data from the "Systemic Adjuvant Treatment of T1a and T1b N0M0 HER2+ Breast Carcinomas; an AERIO/UNICANCER Study."  Of the 12 recurrences among the 112 patients, 3 were in the T1a group (36 patients; 8.3% recurrence rate) and 9 were in the T1b group (76 patients; 11.8% recurrence rate).  As with the other study that we've been discussing, the issue is sample size - the T1a group was simply too small to generate a significant difference. Even if only 1 in the T1a group (2.8% recurrence) and 11 in the T1b group (14.5% recurrence) has recurred, the results would not be statistically significant at the 95% level.  So the only way that the T1a group could have had statistically significantly less recurrence than the T1b group was if there were no recurrences at all in the T1a group.  So much for that!  And how misleading of the authors of the study to state that "Interestingly, there were no differences in the risk of recurrence between T1a and T1b." 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 28, 2012 10:24PM rozem wrote:

hi there

just a quick note  i have read 2 or 3 cases twhere tiny tumors  - less than 5mm with no chemo or herceptin that progressed

not to scare you but they are very aggressive tumors so maybe get another opinion

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Jan 28, 2012 10:49PM - edited Jan 28, 2012 11:03PM by AlaskaAngel

Beesie, the change is very recent. There are only T1a and T1b now, with T1c now basically T1a, and T1b are the node positives.

http://www.nccn.com/files/cancer-guidelines/breast/index.html#/26/

and

http://www.nccn.com/files/cancer-guidelines/breast/index.html#/76/zoomed

One will have to figure out whether the study populations were from before the change or after, to know which T1a's and T1b's are being studied and reported upon.

A.A.

P.S. Again, thank you for you contributions.

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 28, 2012 11:23PM - edited Jan 28, 2012 11:23PM by Beesie

AA, I believe you are confusing tumor size (the "T" in TNM staging) with Stage. Stage I was changed; tumor sizing didn't change. T1a tumors are 5mm or smaller, T1b tumors are >5mm to 1cm, T1c tumors are >1cm to 2cm.  That hasn't changed.

This is the same confusion that we had in the other HER2+ small tumor thread.  Here's what I wrote there:

There is confusion between tumor sizes T1a, T1b and T1c and staging.

  • When discussing invasive cancer, the tumor size is only one element in the staging and in fact a T1 tumor (whether "a", "b", or "c") can be any stage except Stage 0. For example a T1a tumor, which is a tumor that is 5mm or less in size, can be Stage IA up to Stage IV. What determines the rest of the staging is the nodal status and the presence of mets.
  • About 18 months ago Stage I was divided into Stage IA and Stage IB. The difference between Stage IA and IB is not the tumor size - any T1 tumor can be either Stage IA or Stage IB (or Stage II, etc.). The difference is that Stage IB includes micromets. Until January 2010 (the changes were made mid-year in 2010 but were backdated to the start of 2010), micromets was considered the same as macromets and automatically moved the patient to Stage II. However a review of research showed that the presence of micromets (a nodal involvement of >0.2 mm and/or >200 cells but none >2.0 mm) had only a 1% impact on mortality and as such, the decision was made to move those with micromets from Stage IIA into a newly created Stage IB.

So there is no impact to the research studies that are looking at T1a and T1b tumors.

Just wanted to provide clarification for others who are reading this.  

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 29, 2012 12:01AM - edited Jan 29, 2012 02:49AM by AlaskaAngel

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 29, 2012 06:19AM TheLadyGrey wrote:

Dancetrancer, one factor that was material to my decision was that it was evident to me on the face of the report that the pathologist did not like what he saw AT ALL. I have no way of knowing whether my two page report was typical in presentation but I do know it was liberally sprinkled with terms like "unfavorable outcome" -- got to love the euphemisms, right?

By happenstance, I met with the pathologist who did my biopsy report (concluded DCIS, but that is another story). He showed me many slides of different stages, grades and characteristics, so when I read the final report, I had a visual to go along with the words. Being able picture the cancer cells bursting through and the proliferation patterns made the cancer real in a way nothing else has. That was going on in my every own body - how DARE it!!!

Time permitting, consider meeting with or at least talking to the pathologist. I'm convinced each cancer has a distinct personality that is not necessarily reflected in the report. I believe there is an intuitive element to medicine that is lost when the patient and doctor don't interact.

I know you are in a tough spot. There is a certain amount of relief when a decision is made at which point, as one very wise poster said to me, your ONLY job is to show up. You don't have to be cheerful, brave or noble - tired, irritable, constipated and pissed off are just fine.

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 29, 2012 07:04AM dancetrancer wrote:

Beesie, thanks for reviewing the staging and sizing info again...I had read it once, but reading it again I think it is finally sinking in.  Confusing stuff!!!  And oh, yes, I realized after I got over my excitement at that study that the old sample size issue was yes, still an issue.  The greyness, I believe, is never going to become any clearer, no matter how much I search for studies.  I'm a stubborn one...it's hard for my brain to accept "we really don't know" when I'm making a life/death type of decision.  I wish I could listen to my "gut" better...too analytical for my own good. Tongue out

Beverly, I've replied to your PM.

LadyGrey, I have the initial path report, which is pretty non-emotional - just describes the tumor as "infiltrating mammary carcinoma with ductal and lobular features, nottingham grade II (tubules 3, nuclei 3, mitoses 1), 3.0 mm in maximum dimension (microscopic measurement)"   So pretty plain-jane there...yeah...if I had comments like yours it definitely would sway me!  I would love to talk to the pathologist, but at this point, I'm having a hard enough time getting the nurse to call me back.  Ugggh!   I haven't been able to get my hands on the HER2 report...will be requesting that tomorrow.  Thank you 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 29, 2012 08:38AM geewhiz wrote:

Hi Dancetrancer,

You are in my neck of the woods. I go to Emory...are you seeing O'Regan or Zelnak? I believe I was told her2 gets chemo...period, prior to my pathology results.

I am not a chemo fan....those stats suck given what it does to our bodies. BUT, her2 is scary scary stuff. I wish we understood it more. 

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Jan 29, 2012 10:46AM - edited Jan 30, 2012 08:07PM by dancetrancer

This Post was deleted by dancetrancer.
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 10:57AM Layla2525 wrote:

Did they send the stuff to pathology or do any node biopsy? I was told if the bc gets in the nodes,then it gets on the freeway(that being your lymph gland system which runs and cleans blood/tissue all over your body) so to speak and the patient should do chemo; But if the nodes are not positive then the bc car(the invasive cells) never got on the freeway to leave town(which is the breast) so you dont need chemo. Are the drs gonna explain it all to you? As far as I understand the HER is a protein on the bc that makes it aggressive which if it is taken out and not invasive or spreading then the drs may feel the chemo would do you more harm than good. They have to weigh the benefits vs risk and then consult their legal division to avoid lawsuits so I am sure they all have adopted a policy. In our area,most surgeons  belong to the area's surgeon organization and generally follow a certain protocol for "standard of care".

bmx w/TE on 2/13/12,exchange to Mentor high profile 600cc gel implants on 08/30/12,07/01/2013,new Natrelle 45 gel,replaced Mentors due to capsule. Dx 12/19/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jan 29, 2012 11:04AM dancetrancer wrote:

Layla, I'm 0/3 nodes.  Unfortunately, HER2+ has a sneaky way of bypassing the nodes and going straight to it's destination elsewhere in the body.  Actually, any invasive cancer can do this (small risk), but it is my understanding that HER2+ is much more aggressive with a greater risk for distant metastasis than other cancers.  Someone please correct me if I'm wrong.  

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 12:14PM suzieq60 wrote:

Dancetrancer - interesting the mitosis is only 1 - that could be a factor in making a decision. If you had 4 path reviews, I wonder if that is accurate. Mine was 3 - it is the rate the cells divide.

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 12:18PM dancetrancer wrote:

I have no clue susieq58.  All I know is that is what makes mine Grade 2, not 3.  (there's a formula for adding up the 3 scores and getting the grade)

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 12:31PM suzieq60 wrote:

I scored the highest in each one. Still, it is something for you to ask the oncologists about.

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 01:09PM dancetrancer wrote:

Here's a video of of a breast cancer conference from June 2011 you all might find interesting.  You have to register to see it (free).  A panel of experts talks about how they would treat a 5 mm, node negative, HER2+, ER negative patient who is < 60 years old (at around 8 min 50 sec (or slide 4) of Module 1).  

http://www.researchtopractice.com/ASCOBreast11/Video

Of course this isn't my exact case since mine is smaller and ER+ (which are both more positive features), but it is very interesting to listen to, plus, they talk about other case variations.  I'm still processing what they had to say.  It seems like many of the docs would consider treating if around 5 mm, but most emphasize "it's a conversation with the patient" and some say if she were ER+ it is a more difficult decision, b/c  they know Tamox is going to help..so how much more help would chemo be?

When asked about a 3 or 4 mm patient, one doc said it is difficult to know what is the right cut-off.  She went on to say that with the 5 mm, some pathologists might tell her it was actually 6 mm, so since this patient is so close to the cut-off, she'd advise chemo/hercep.  She never directly answered the 3 to 4 mm question...dang! 

Dr. Winer (of Dana Farber) states: 

"I think it is a challenging situation. For the patient with a t1A/bordering B ER negative cancer, it is reasonable to consider treatment, but it is by no means something that one always has to do. It is a conversation with the patient. I think for the patient with microinvasive disease, or the patient who has a 2 mm cancer, I think we are treating ourselves and not the patient by administering therapy."  

Interesting.  This is making me question chemo/Hercep a bit for my case, but the jury is still out in my mind. Undecided  Hope this helps someone else in the future 'cause this is a tough, tough decision.  

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 02:28PM whippetlover wrote:

dancetrainer,

The issue of proliferation is an important one. My tumor (5x5x8mm) was also grade 2 with exactly the same make up as yours- ie mitotic count of 1. I had one oncologist tell me that the her2+ trumps this and another say that although it is her2+ it is not dividing rapidly so chemo would not have been of great assistance. I did not have chemo or herceptin. I am 7.5 years out with no recurrence so I tend to agree with the latter onc. I did have rads and 2 years of tamoxifen + 1 year of arimidex for a weakly er+ tumor. I would definitely ask your onc about the benefit of chemo with a mitotic score of 1.

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Jan 29, 2012 02:44PM whippetlover wrote:

dancetrainer

As an addendum to my last post the following analysis is of note:

http://annonc.oxfordjournals.org/content/early/2010/06/19/annonc.mdq304.full

Apologies if you have already read it! Once you wade through all of the comparative studies cited, many of which have small sample sizes, the discussion at the end is of interest as it identifies the proliferation index as the strongest factor in recurrence for all T1a/b tumors.

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Jan 29, 2012 03:13PM dancetrancer wrote:

Hmmmm...that indeed is something to discuss with the doc.  Thank you to both of you for calling my attention to it.  Here is what the article says:

Available data do not clearly show a substantial difference in the risk of relapse between pT1a and pT1b HER2-positive tumors. Current data rather suggest tumor biology (proliferation and grade) than shear tumor size to be a more relevant predictor for the risk assessment in these small HER2-positive tumors. The authors suggest that these factors should be included in addition to tumor size in decision making and that adjuvant treatment may also be considered in patients with HER2-positive tumors <6 mm when factors such as increased Ki-67 and/or poor nuclear grade suggest aggressive tumor biology.  

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 03:20PM suzieq60 wrote:

dancetrancer - did you get a KI-67 number? They don't seem to report that over here.

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 05:59PM - edited Jan 29, 2012 06:02PM by Maja2213

Hopefully I can answer all that you asked. First of all, my Oncotype number -- are you sitting down? -- 75! We ran it while waiting for the FISH results otherwise being Her2+ we wouldn't have bothered. Even though I was something like 70% ER+, it was only at a +1 intensity or only weakly so. The Oncotype test looks at the effectiveness of Tamoxifen and because my cells were weakly responsive to estrogen, for their purposes I actually slid down into the ER- range. My MO was shocked and even pointed out that only 10 years ago I wouldn't have been offered chemo at all due to my tumor size and there I was reading that without any chemo, I would have a 34% recurrence rate on a 4 mm tumor that had been sitting like a cherry on a grade 3 DCIS.

Dana Farber's Dr. Winer (as I was told) had just completed a three year recruitment (in Oct 2010) for a study on stage 1 her2 positives where they received taxol and herceptin once a week for 12 weeks. Taxol, unlike Taxotere, must be given weekly because it has a shorter half life. At the end of 12 weeks, I was switched, as per the study (which I was not part of) to Herceptin every 3 weeks for 9 more months.

Taxol was not horrible for me. I listened to my nurse about drinking a gallon of fluids per day. I took anti nausea pills and never once had nausea. My hair starting falling out on day 15 though I kept my eyelashes and brows til 3 weeks after taxol ended. My nurse was most worried about neuropathy but almost a year later and I seem fine. I had treatments on Fridays and could've gone to an office job on most Mondays but had lost my job a few months before the diagnosis so I was home anyway.

Herceptin was easier although I did get pretty tired near the end. It stays in your system a long time and so really builds up by the end. It is not chemo per se, so my hair grew in just fine while on it. I felt bloated a lot and had a mild runny nose all year. My fingernails still are dry and splitting but I don't know if that is the Herceptin or Tamoxifen.

For small tumors, my hospital generally does surgery first, then chemo, then start tamoxifen while you recover, and then radiation about 3 to 4 weeks after chemo. I've been told there is something about taxanes that you have to wait at least 3 weeks to start radiation because you'll burn more easily. I did not badly at all and I am naturally pale, pale pale.

And yes Herceptin continued during radiation. Tamoxifen made for some wonderful soaking hot flashes during the weeks of radiation when you are told to keep dry. I know many places delay tamoxifen until after radiation, mine does not. My RO also told me he was very concerned about radiating my under arm and upper chest lymph nodes because of the Her2+. He thinks herceptin is great but from a radiation standpoint, cannot trust it to do its job alone. I see you went for BMX while I had a lumpectomy so I find it interesting you'll have radiation but possibly no chemo or Herceptin? A lot of dcis and stage 1 people that do a BMX avoid radiation.



Hope this helps.
Dx 10/1/2010, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Jan 29, 2012 06:23PM dancetrancer wrote:

susie, no, no Ki-67 number on my path report.

Maja, that is incredibly helpful - thank you soooooooooo much for all of the details!  If I end up doing chemo, I am definitely going to ask if I can have this "lighter" chemo approach of Taxol with Herceptin.  So, no "C" (Carboplatin or Cytoxan)?  

Regarding radiation, that is for a completely different reason, separate from the 3 mm IDC issue.  It is b/c I had close margins of DCIS after my MX (< 1 mm from the anterior margin and posterior margin).  It's controversial, so had to get multiple opinions...which is what actually led to them just now finding the small IDC b/c they did their own path review.   

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 07:13PM bluedasher wrote:

It seems that all the less than 1 cm node negative studies have fairly small HER2+ populations (100 or less) and some of them have relatively short follow-up. As little as 2 years in one case. The Beth Israel study that whippetlover posted showed charts 10 years out but its median follow-up was 3.5 years. With varying follow-up times and very small samples in a population expected to have lower events, there is a lot of statistical variation.

The Research to Treatment video was very interesting. 

Dr. Martine Piccart-Gebhart made a comment that I'd like to point out on the 0.5 cm case they discussed. She said that another pathologist might look at the tissue and say it was 0.6 cm. As an engineer, when I'm given a number, the first question is about how it was measured? What is the accuracy. We get these numbers from path reports and are making a treatment decision based on a fairly small measurement difference. Look at a cm and the mm divisions of it on a ruler. To make the measurement, the pathologist has to decide where the cells went from DCIS inside the duct to IDC outside the duct and where they go from cancer cells to normal cells. The pathologist isn't measuring a tidy ball, it may be irregular as cancer growth often is. 

I think that measurement uncertainty producing a fairly arbitrary boundary between T1a and T1b tumors could be one reason that some of the studies don't see a significant difference (or even much of a non-statistically significant difference) between T1a and T1b recurrence.

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 29, 2012 07:31PM dancetrancer wrote:

Bluedasher, the measurement accuracy comment that doctor made caught my attention, too.  And, my husband, who is also an engineer, had some questions about how absolutely accurate that measurement might be...it gives one pause, for sure...so much of this is unknown.  

So, that, in combination with the dearth of good research on our specific population, is why there are so many different medical opinions on what to do with T1A tumors, I think.  No one really knows.  

Time to check my gut and see if intuition is kicking in yet.

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 07:34PM suzieq60 wrote:

Good point bluedasher as my tumour was elongated - stated as 11mm but was actually 11 x 6 x 7. My DH loves maths so he calculated how big a circle that would be and it was only 5mm in diameter. The surgeon said they go with the largest measurement.

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 08:20PM fluffqueen01 wrote:

maj...taxol can also be given every three weeks.I had either as an option but both oncs said that they feel the weekly dose is much easier on the system and keeps an even dose in the body. It definately was far easier than I had anticipated and prepared for. We had almost exact side effects. I kept my nails iced and they were great, except now that I receive dose dense herceptin, they have gotten much thinner and splitting some. I still ice them, and have three more herceptins to go.

My hair is growing in but slowly and thin on the top. I am hoping it is the fault of herceptin, so that it will grow more quickly when it isdone. I drank tons of water also...well assuming you can count iced tea, I can't give it up.

My ki-67 was in my path. It said 15, borderline. Figures...right in the middle.

My mitotic score was also a 1, with the nuclear a 2 and architectural a 3, so I staged at a 2, but barely. I am t1b, and honestly, when I have had that conversation with my onc, he said he wouldn't change my treatment recommendation, but mine was bigger than yours. I was 1cmx1cmx.8 at the greatest point. Of that 25% was multifocal LCIS.

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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