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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Chemo for DCIS ?

Topic: Chemo for DCIS ?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Mar 15, 2008 12:39PM

ijl wrote:

Britbaby menioned that she was offered chemo for DCIS to prevent a recurrence. I've never heard anyone being offered chemo for DCIS , ven with a miroinvasion. I know in my case it was not even mentioned.

So I wonder whether anyone else was offered chemo and whether it was based on any studies for prevention of the recurrence.  

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Mar 15, 2008 12:57PM PSK07 wrote:

Inna -

Chemo is only for invasive cancers. DCIS is non-invasive, so chemo isn't offered or needed. If you have DCIS with a micro-invasion, you are moved up to Stage 1 and chemo may or may not be called for. All depends, is what I understand.

IIRC, Britbaby had a micro-invasion + DCIS.

Going along with this is tamoxifen is the only hormonal treatment approved for DCIS patients.

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Mar 15, 2008 01:09PM ijl wrote:

I did have a microinvasion, but none of oncologists mentioned chemo. No could I find in any literature a suggestion to treat DCIS with a microinvasion with one. That's why I was surprised to see that someone was actually offered chemo for this and wanted to find out more

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Mar 15, 2008 01:34PM PSK07 wrote:

Wow, just wow. I know there's testing they can do - Oncotype - that will help with the chemo decision. I wish I knew an answer. :(

Beesie's the pro, maybe she'll have the answer.

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Mar 16, 2008 05:35AM, edited Mar 16, 2008 05:36AM by Beesie

Chemo is absolutely not required for DCIS alone. 

For those who have a true microinvasion, with the exception of Britbaby's case, I've never heard of chemo being given.  Technically, a microinvasion - T1Mic - is 1mm or less.  Still, most doctors consider 2mm and 3mm IDC tumors to be microinvasions and treat them as microinvasions.  I don't think I've heard of anyone with a tumor less than 4mm being given chemo.  Certainly the accepted treatment guidelines don't suggest chemo for any tumor that is T1a (5mm or less) and only suggest chemo for tumors that are T1b (5mm to 1cm) under certain conditions.  

Here are the guidelines for chemo from NCCN:  

No Adjuvant Therapy when there is no lymph node involvement, for

  • Tumor less than or equal to 0.5cm
  • Microinvasion
  • Tumor 0.6cm to 1.0cm, well-differentiated 

Adjuvant Hormone Therapy with or without chemotherapy when there is no lymph node involvement and the tumor is ER+, for

  • Tumor 0.6cm to 1.0cm, moderately or poorly differentiated or with unfavorable features

Consider chemotherapy when there is no lymph node involvement and the tumor is ER-, for

  • Tumor 0.6cm to 1.0cm, moderately or poorly differentiated or with unfavorable features

Once you get into tumors that are 1cm or greater, the guidelines get even more complicated.  But even for tumors of this size, if the conditions are favorable and the tumor is ER+ (and therefore hormone therapy can be given), chemo is not always recommended.

Over the 2+ years that I've been coming here, there have been quite a few women who've come to the DCIS forum and said that they were given chemo for DCIS or for DCIS with a microinvasion.  However upon going back to look at their pathology report, most women usually report back that in fact there was a larger invasive component than they thought.  Often women just pick up the term "DCIS" from their pathology report and miss the "invasive" or "infiltrating" component.  Alternately, it could be that chemo was prescribed after a recurrence that included IDC.

Anyone interested in the NCCN guidelines can find them here:

http://www.nccn.org/patients/patient_gls.asp 

Click on "Breast Cancer" under "Treatment Guidelines for Patients".  These guidelines were just updated a few months ago and are used by most major cancer organizations and hospitals.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 16, 2008 07:09AM, edited Mar 16, 2008 07:11AM by roseg

The whole thing with britbaby was confusing.

The latest that I read on her daughter post (mimi?) indicated she started with DCIS but was found on full surgery to be Stage I.

It's pretty common here for ladies to miss the notion that a more serious invasive diagnosis trumps DCIS.  

Chemo is not a riskless treatment. To offer it to someone who was only found to have DCIS would be overtreatment, which can be just as serious as undertreatment!

Of course, every so-many women someone comes along who only had DCIS and then turns up Stage IV in a couple of years. That can happen. Luckily for most the chances are very low.

The DCIS thread has plenty to contend with because so many women who ONLY have DCIS come and are all freaked out. I for one prefer those who've had an invasive dx to post on those boards so that it doesn't become confusing to newbies. 

Rose

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Mar 16, 2008 08:21AM ijl wrote:

Thanks for the replies. As Beesie said chemo is usually not prescribed for DCIS and microinvasion with clean nodes.  I was hoping britbaby would respond here to exaplin more about her diagnosis so the rest of us can benefit. I think it is OK to hear about more "severe" cases of DCIS. We just want to make sure we understand what was the exact daignosis. This suggestion of chemo combined with exact percentage of recurrence was a bit unusual and I wanted to learn more about it.

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Mar 16, 2008 08:27AM PSK07 wrote:

Argh - agree w/ rose, but now I'm simply curious. So at what point does it become Invasive w/DCIS rather than the reverse?  When is a micro-invasion simply invasive? 

(I'm not worried about risk, just had my 6 month post-dx mammo and all was clear, just curious. I didn't realize how much that meant until the tech said all-clear, you can go, and I let out a such a breath!)  

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Mar 16, 2008 08:31AM, edited Mar 16, 2008 08:32AM by ijl

Pam,

I know what you mean about mammo. I had my 6 months last february and they by mistake ordered a diagnostic one. This was for my "original" breast as I had a mastectomy. Since it was  diagnostic , they told me the results right there. They told me that the next time, I would have to wait a few days. It will be sooo hard. 

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Mar 16, 2008 09:39AM sccruiser wrote:

Inna,
You might want to discuss the issue of waiting extra days for the results of your next mammo. I know every breast center is different. For me, I go to my medical clinic for my mammo. The radiologist told me personally that any woman who comes in for follow up mammos after bc diagnosis & tx, will be given the results right then for at least the next 3 years! I was delighted. All I had to do when I made my appt was to inform the receptionist that I wanted it scheduled when the radiologist was in the dept and available to read it immediately. After checking with her supervisor (of course she couldn't take my word for it) she made the appt. This has happened for the past 2 years, and it has relieved much of my worry every year.

Hope you can arrange that for yourself. No one who is at risk should have to wait.

good luck,

grace

One must still have chaos in oneself to give birth to a dancing star

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Mar 16, 2008 09:51AM PSK07 wrote:

My imaging center has radiologists on staff and present during their open hours. Each mammo is read immediately by the doctor, so there's no waiting.  I don't know if that's part of it all being digital, but it is a wonderful thing.  When i had the initial dx last summer, the radiologist brought me right back to the screens and showed me the area of concern.

Such a difference from my first mammo 7 years ago.

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Mar 16, 2008 09:56AM roseg wrote:

Where I go if you ask they'll schedule your mammo for a time when the Radiologist is there and the tech runs your films over right then.  It's not a final reading but at least you leave with a preliminary opinion. I still hold my breath for the "all clear" letter.

Nobody where I go mentioned they'd only do that for 3 years. I'm going to keep requesting the appointment time when the Radiologist is there until they tell me no, and then I"m going to complain!

Rose

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Mar 16, 2008 10:15AM, edited Mar 16, 2008 10:17AM by Beesie

Pam, officially I believe that anything over 1mm of IDC is considered IDC rather than DCIS with a microinvasion.  But if you have a couple of separate 1mm microinvasions, most docs will still say that you had DCIS with a microinvasion.  And I know that some women who've had 2mm or 3mm IDC tumors in with their DCIS have also been told that they have DCIS with a microinvasion.

In the end, the problem is pretty much one of naming convention only.  In all other ways, it doesn't really matter, for a couple of reasons. 

  • First is that any amount of IDC, even the tiniest microinvasion, changes one's status from Stage 0 to Stage 1. You are only Stage 0 if you are Tis (in situ), N0, M0.   Stage 1 begins with T1mic (microinvasion), N0, M0.  So whether it's 1mm of IDC or 4mm of IDC (or 1.9cm of IDC, for that matter), it's all Stage 1.  It's true that many of us who have DCIS with a microinvasion consider ourselves DCIS patients, but officially we are all Stage 1. 
  • Second is that the treatment of T1mic (1mm or less) and the treatment of T1a (greater than 1mm but not more than 5mm) is almost always the same, particularly if the T1a tumor is mixed in with a lot of DCIS (rather than a distinct T1a tumor on it's own, which might be treated differently).  So whether it's called DCIS with a microinvasion or a T1a tumor usually wouldn't make any difference.

Frankly, I think the main time when this becomes relevant is when someone has a microinvasion but doesn't mention it and says that they have DCIS.  Most of the time that doesn't matter, but when you start talking about lymph node invasion or distance recurrences and mets, it makes all the difference in the world.   Lymph node invasion, distance recurrence and mets cannot come from pure DCIS.  One of three things has to have happened:  1) The original pathology was DCIS along with a microinvasion (or a greater amount) of invasive cancer; 2) There was a recurrence after the original bout of DCIS and the recurrence came in the form or IDC or included a microinvasion; or 3) There was a microinvasion in the original pathology that was never found and this microinvasion had already moved into the lymphatic or vascular system.  This one's the scariest, of course, since you have no warning, but the likelihood is very very low.

I agree with Rose.  I think that newly diagnosed DCIS women are worried enough when they come here.  Someone with invasive cancer may have something very valuable to add to a discussion, but it really helps if the difference in diagnosis is noted.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 22, 2008 07:36PM crazydaisy wrote:

I do agree that it would be good to hear from people who's original DX was DCIS but upon further investigation that may have changed. I think that is the main question with DCIS, how and when does it become invasive. I know this moves you along the ladder but I for one am interested in hearing from those who's DCIS progressed. When and how long before it developed furthur. It is possible or otherwise we would not be doing what we're doing now. So it is important to know and hear about it for our own sake.

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Mar 23, 2008 04:20AM Beesie wrote:

Viv,

I have the feeling that the answer that you are looking for isn't an answer that's really available. I don't think that DCIS becomes invasive in a way that can be monitored.  In most cases, if the DCIS is removed while it's still pure DCIS, then the cancer cells have never had the chance to move outside of the milk ducts and the DCIS will never progress and turn into anything more serious.  That's what happens in about 85% of cases of DCIS.  But there are two situations in which an original diagnosis of DCIS can turn into something more serious. Both of these are pretty straightforward. Either: 

1) A microinvasion is found in with the DCIS and cancer cells from that microinvasion have already started to spread into other parts of the breast or into the body by the time the DCIS is removed.  In this case, which is quite rare, it's possible to get a distance recurrence (outside of the breast) "directly" from the DCIS, except of course that the actual cause of the distance recurrence was the IDC microinvasion, not the DCIS.  To my post above, anyone who has DCIS w/ a microinvasion is diagnosed as Stage 1, not DCIS Stage 0 so it should be understood from the start that this is a possibility.  Britbaby's situation is an example of this.  Usually in these situations, the distant mets is not discovered until a few years later.

2) While the diagnosis was pure DCIS, all of the DCIS cells were not removed during surgery or killed off by post-surgery radiation and some time after the original surgery, there is a recurrence.  In 50% of cases of DCIS recurrence, the recurrence will come in the form of IDC.  This means that those remaining DCIS cells had the time to progress to become IDC (i.e. they broke through the milk duct)during the time they were left undiscovered in the breast.  At this point, the recurrence would be staged as IDC.

The other situation, which I suspect may be what you are thinking about (I'm just guessing here), is when someone is diagnosed with both DCIS and IDC together. It could be that DCIS was all that was found during the original biopsy, so initially it's thought that the diagnosis is DCIS.  But as soon as all the affected breast tissue is removed (via excisional biopsy, lumpectomy or mastectomy), it's clear that IDC is present as well.  In these types of cases, the original diagnosis of DCIS was preliminary only; it was never the actual or final diagnosis.  The only diagnosis that counts for any of us is the diagnosis made after the final surgery and any other necessary tests (of lymph nodes and for mets).  So in this case, the diagnosis was never really DCIS and in fact once the official diagnosis is made, the DCIS is pretty much considered to be incidental - it's the IDC that's treated.  In all likelihood a situation like this would have started with DCIS that then turned into IDC, but since the cancer isn't found until the IDC is present, there is no way to know how long the DCIS was there before the cancer cells broke through the milk ducts.

I hope this explanation helped and didn't simply add to the confusion.   Undecided

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 23, 2008 04:36AM crazydaisy wrote:

Beesie, thanks......you do have a way with words to help explain things. It does make perfect sense and verifies what I have read. For me waiting for the final path from the mast, this question has still been on my mind, as you can probably tell? HA, well.....always wondering.

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Mar 23, 2008 04:48AM ADK wrote:

Just to tell you my story - I was originally dxed with IDC after a lumpectomy.  I had a second surgery and there was no IDC present at the time of the second lumpectomy - only DCIS.  I guess I had a micro invasion that was completely removed with the first surgery.  I did not have chemo - it wasn't really offered to me. 

Anne

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Mar 23, 2008 04:59AM crazydaisy wrote:

Adk......so does that put your Dx at IDC or DCIS?

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Mar 23, 2008 10:55AM, edited Mar 23, 2008 10:56AM by Beesie

Viv, I'm curious to see what Anne's doctors told her, but with any amount of IDC, whether it's found in either the biopsy or lumpectomy/mastectomy, the diagnosis has to be IDC.  Sometimes this isn't explained well. 

In my case, I had about 7cm - 9cm of DCIS (it's hard to add it up exactly because it was in two areas and I had two excisions) and only 1mm of IDC, but I'm Stage 1 (T1mic, N0, MX).

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 23, 2008 11:45AM Marian wrote:

Beesie, I have always wondered, if at final surgery there is a microinvasion and therefore no longer Stage 0 why is it not just Stage 1.  It would be like me saying my biopsy said IDC Stage II and then at final pathology finding Stage IV..  the ICD Stage II no longer has a place in the dx.  Yet you continue to reference yourself as DCIS rather than ICD Stage 1 - so that must not be so with DCIS?  This is all so confussing and I think this is the only time where it doesn't immediately become a new dx and therefore a new treatment??

Best

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Mar 23, 2008 02:48PM ijl wrote:

I was told I am a stage 1a just like Beesie. I had 2mm of IDC and 6cm of DCIS, so since it was predominantly 97% DCIS. I think of myself as DCIS and all my doctors refer to is as such.

I guess the difference is at the origin of the BC. A lot of IDC does not start with DCIS or some tumors have a bit of DCIS but are predominately IDC, hence they are refered to as IDC.

In this case the predominant mass is DCIS with a miniscule part of it that underwent transformation to IDC.

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Mar 24, 2008 04:09AM Beesie wrote:

Marian,

Technically you're right.  I had a microinvasion, so I'm Stage I. 

If you look at articles and websites that talk about breast cancer staging, many just leave it at that.  Stage 0 is in situ (Tis, N0, M0) and Stage I is any amount of invasive cancer up to 2cm (T1, N0, M0).  So someone with a microinvasion of IDC is Stage I.  But other articles and websites are more specific and break the "T" in Stage I down into subgroups.  These are:

  • T1mic: Microinvasion 0.1 cm or less in greatest dimension
    T1a: Tumor more than 0.1 but not more than 0.5 cm in greatest dimension
    T1b: Tumor more than 0.5 cm but not more than 1.0 cm in greatest dimension
    T1c: Tumor more than 1.0 cm but not more than 2.0 cm in greatest dimension

Personally I find value in this more detailed breakdown because there is a big difference between having a microinvasion and having a 2cm invasive tumor.  The treatment will be quite different.  And that gets to the crux of why my doctors and I think of myself more as being a DCIS patient than an IDC patient, even through I'm officially Stage I.   With the exception of the need to check my lymph nodes, my treatment is identical to that of a DCIS patient, despite the fact that I had the microinvasion.  That's why I feel more comfortable in a DCIS environment than an IDC environment.  I am being treated as though I had DCIS.

For someone who has only a microinvasion of IDC, once the nodes have been checked and found to be clean, the IDC in effect becomes incidental to the rest of the treatment.  The microinvasion is removed along with all the DCIS and never needs to be considered in the treatment plan (except from an awareness standpoint, with regard to the slight risk of distant recurrence).  On the other hand, for women who have larger amounts of IDC (0.5cm or more) together with any amount of DCIS, it's the DCIS that becomes incidental, with their treatment plan being based on the amount of IDC that they have. 

The example that you raise is different, since someone who thinks they are Stage II at the time of the biopsy but then discovers that they are Stage IV when they have their surgery, will be treated as Stage IV.  An early stage example that would be similar to this is someone who thinks they are DCIS Stage 0 at the time of the biopsy, but then 0.7cm of IDC is found during their surgery.  They not only will officially be Stage I, but their treatment will be based on being Stage I rather than DCIS.

Hope that clarifies.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 24, 2008 04:53AM Marian wrote:

I think so thanks.. it is more that you are right on the fence and so are treated with a bit more caution (lymph node check) but you really haven't stepped over to the other side.. I can see that..

Best

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Mar 24, 2008 12:26PM, edited Apr 16, 2008 02:22AM by Liz08

This Post was deleted by Liz08.

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes

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Mar 24, 2008 12:44PM crazydaisy wrote:

Liz.......I just had a RB MX for DCIS grade 3 comedo necrosis, don't know HER2 status on mine or even if I will. Do they normally test for that when you have a MX? I am still waiting for final pathology from surgery. I am interested to hear about what your docs have to say and what you decide. Hope you get some answers.

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Mar 24, 2008 01:06PM PSK07 wrote:

HER2 status is meaningless for pure DCIS. They shouldn't even test for it.

If I read what Beesie has written correctly, 1mm of microinvasion shouldn't result in chemo.  If they got all of the invasive stuff, and it is only 1mm or less, and have good margins, lumpectomy + rads may be sufficient.

With pure DCIS, only tamoxifen is approved. If you're ER-/PR-, you can't even have that.

Rads are doable. Yeah, I took 6 weeks off work and my skin looked nasty, but they're done and I've recovered just fine. The rads mean that if there is a recurrence or a new primary I have to have a mastectomy, but I figure that if something else came up I'd have a mx, rads or not.

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Mar 25, 2008 03:52AM ijl wrote:

Liz,

Have they checked your lymp nodes during lumpectomy ? Perhaps doing that and proving them clear would take a question of chemo of the table.

Is your oncologist experienced with BC and DCIS ?

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Mar 25, 2008 04:14AM ADK wrote:

Hi all,

I hadn't been back to this thread, so I didn't see the question that was poised to me - I was told I was stage 1b, so my dx was IDC.  I did have a SNB that was clear with the second excision, so that is most likely why I had no chemo offered to me.

Anne

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Mar 25, 2008 04:41AM larousse wrote:

Liz,

Like Inna asked, is he really experience with DCIS? Find out if he has ever delt with a case similar to yours before or just many dcis cases. Testf or HER2, isn't common practice for DCIS. Maybe he is more used to deal with invasive BC cases.

If I were you, I would drill that onc with all the questions to determine exactly why he thinks that chemo is appropriate for your situation, and the other 2 for why they recommand rads only. Don't be afraid of calling them. An older friend of mine was in the same situation, she was Stage 1, clear nodes, opted for rads instead of chemo, because the doc who recommanded her rads had a better argument, but age was a factor for her, she was 70 at the time (still going strong by the way).

Your dcis and micro-invasion is out, you had clear nodes, the next treatment isn't a rush, take your time, don't rush into a treatment you aren't sure about.

Best

Dx 12/31/2007, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+
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Mar 25, 2008 06:08AM, edited Mar 26, 2008 09:23AM by Liz08

This Post was deleted by Liz08.

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes

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Mar 25, 2008 10:28AM, edited Mar 25, 2008 10:34AM by mimi1030

Hello There,

This is Britbaby's daughter.  My mom is not currently posting as we have lost a lot of sisters on the mets board in the past 3 months and it is very distressing sometimes to come in here when you have stage 4 cancer yourself, so she is taking a break. 

I didn't see this post until now, but would like to follow up and some of the discussion.  Firstly, there is nothing confusing about my mom's case.  I have copies of the path reports for my mom, if you like I can post it here for you to see.  I feel sometimes that people think we are leaving out info on my mom's details as it is almost impossible for the out come to have been what it is.  I can't explain it myself, I just know it is what it is and nothing can be done to change it, nor can we grapple with the why's and how's of it happening.  We just have to try to deal with it and fight it head on.  We can't sit here and analyze why, because we will spend precious time on something that really can't be answered.  There is no hx of BC in our family. 

But, after my mom's lumpectomy showed DCIS Stage 0, Grade 1, 2.5cm with dirty margins, the doctor said it would be best if she go to a cancer center to have this either reexsized or consider Mastectomy.  My mom being that she has always been aggressive with everything in her life, and the fact she has spent many years in the medical profession, decided for her a Mastectomy was in order.

We transferred her to the UCSF Cancer Center near my home in San Francisco for consultation of Mastectomy.  The mastectomy was performed along with node removal.  Path came back with 1cm margin of DCIS with .5mm Microinvasion (IDC), nodes clean, margins clear, Stage 1, Grade 1, Her2+++.  We were told because of the Her2 Status, she is highly her2, that her tissue would be reviewed by the tumor board at UCSF to discuss further treatment.  In 2004 Herceptin was not approved for use in early stage cancers.  So, they hummed and arred over chemo in her case.  3 oncs were present on the tumor board all experts in Her2 receptor BC.  2 out of the 3 agreed she should do chemo.  She was put on 4 rounds of A/C.  She was cleared by BS that she was cured and had less than a 2% chance of a reoccurance.  She said my mom would, and I quote "Have more chance of dying of something else than this breast cancer, you are all clear"

She underwent reconstruction after the expander was filled, the first 3 recons with impants failed.  After a year of surgeries to fix the implants she decided to do the TRAM.  Big mistake.  Failed TRAM left her in pain near her abdominal scar, up to the new left breast.  In Sept 2005, she had full body bone scan, all clear....In November 2006 she had full body CAT scan...all clear.  She also had liver ultrasound...all clear.  She was getting yearly mammo's on good side...all clear.

After 2 years of annoying pain from the TRAM site, she had complained enough and contacted her BS about who else she could see there to find out what is wrong with TRAM site.  BS randomly decided to do full body PET scan, seems she suspected something we didn't.  The PET scan in Sept 07 revealed widespread and extensive mets to the liver and bones.  She was not having symptoms of the mets not from the bones or the liver, however her liver enzymes were high.  This is why. 

So, with all that said this is what my mom's case is.  The doctors at UCSF were flawed when they saw the PET results.  Do we blame the mets on not getting herceptin?  We will never know.  It is not that we didn't do enough for her in the beginning, we did all we could do at that time to reduce the chances.  My mom is an aggressive woman, and she is a single parent with 3 girls, we are from the United Kingdom and our mom is the only family we have here in the US.  So, with that my mom knew in her heart she had to do and endure what she had to to survive for her kids. 

Yes, my mom's case is an unusual one.  We figured 2%, no biggy.  But, 2% is still 2%....it still means 2% will get a reoccurance, and unfortunately you never know if you are going to be in the 2% club.  There is no test to tell you that.  For my mom she was in the 2% group.  I hope I have been able to clarify the details as best I can for you all.  This is her story, nothing has been missed.  I have read the pathology report 50 times and this is what it says.  I have been the primary medical decision maker in my mom's care for 4 years.  I too have spent 10 years in medicine so I know what to expect, I know what works and I know exactly what I we are dealing with.  I know we did everything we could to prevent it coming back at that time. 

To date, mom is doing great....treatment is working.  She is now on Herceptin and it has wiped out all but 2 tiny spots in liver, bones are healing, we expect her April PET scan will give us NED.  I have changed her diet, she is exercising and she never felt better.   Oncologist was astonished at the 360 turnaround in her mets on last scan.  The pain she has from her TRAM is still there but thanks to a poster in here, it could very well be Trunkal and abdominal Lymphadema, we will get her evaluated for this, many TRAM flap women have this.

If there is anything else I can answer, I am not sure what people want to know about my mom's case.  But I have been at every appointment, surgery, consultation and I know more about my mom's cancer than my mother knows.  So, I can answer any questions you may have further. 

I have kept myself to the metsters board as it seems that my presence in the other boards is not appropriate.  Anytime you need to ask me anything, you can PM me or come see me over in the mets area as anyone is always welcome there.  There are many women there that have had chemo with only a microinvasion so in the world of mets you hear alot of stories that are shocking, that is why we stick to our area, because no one else ever really wants to her your story.

I hope this isn't too long but felt the need to speak for mom as she is not here herself.  Although I will tell her to read this thread if she wants to add anything.

Take Care everyone,

Michelle

My mom was dx 8/2004 DCIS with 4mm of IDC, Stage 1, 0 Nodes, Grade 1, Her2+++ cancer. Left side mastectomy with 4 rounds A/C. 9/2007 Mets to Liver and Bones. 2/28/10 craniotomy confirm brain mets 3/1/10 begun Tykerb 3/15/10 WBR and Xeloda.

Dx 9/29/2007, IDC, <1cm, Stage IV, Grade 1, 0/1 nodes, ER-/PR-, HER2+Surgery 11/12/2004 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left); Reconstruction: TRAM flap (Left)Chemotherapy 11/14/2004 Adriamycin, Taxol, XelodaTargeted Therapy 01/23/2010 TykerbRadiation Therapy 02/09/2010 External

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