DCIS and Chemo??

Perhaps she had Her2 +, which she then would have been offered Herceptin, even for DCIS. Herceptin is  not a chemo, but some folks think it is, so perhaps thats what she meant? Just a thought.,I agree with you on Beesie! she is a wealth of facts and knowledge!!

I'd put money on the fact that her friend didn't have DCIS.  Lots of women think they have DCIS when in fact they have IDC.  You see it on this board all the time.  Look around at the diagnosis lines and you'll see lots of women who say that their diagnosis is DCIS Stage I (or Stage II or Stage III or even Stage IV).  Or you'll see women who state their diagnosis to be DCIS but also note that they had positive nodes.  Or in posts you'll read where women say that they have "invasive DCIS".

Most women with IDC also have some DCIS.  That's what causes the confusion. For some reason, the term "DCIS" seems to stick out when doctors talk to patients or when women read their pathology reports.  "DCIS" does seem a lot clearer and easier to pick out than "invasive ductal carcinoma" or "infiltrating ductal carcinoma".  As a result a lot of women who have IDC (along with some DCIS) think that they have DCIS (or maybe "invasive DCIS").  Those are the DCIS women who get chemo.  

Sometimes when I come across a situation like this I say something but these days I usually don't bother because it's such a common mistake.  It would be nice if doctors took the responsibility of fully explaining a diagnosis and ensuring that the patient understood.  But that doesn't happen. 

I had DCIS and was diagnosed in Sept 2011.  Had a mastectomy on November 1 and reconstruction surgery.  The doctor took out six lymph nodes which came back clear.  I didn't need any chemo or radiation because of this and the doctor said I was 99.9% cured.  I don't understand why she would need Chemo.

I agree that when women misstate their diagnosis, it can lead to confusion.  I've seen it here a lot. But it's a sensitive issue. I used to always ask questions when there seemed to be a disconnect between a diagnosis (DCIS) and either the treatment (they had chemo) or the specifics of the diagnosis (positive nodes) or the stage (anything other than Stage 0). I don't do that as much these days.  Some women are glad to get the information and use it to talk to their doctors about their diagnosis but other women are not happy at all to be 'corrected'.  A few years ago I was blasted - both publicly on the board and in some really brutal PMs - because I questioned someone posting extensively in the DCIS forum about her diagnosis.  The individual said that she had DCIS and had been given chemo.  That didn't seem right so I asked some questions about the specifics of the diagnosis.  That did not go over well.  It turned out that I was right, however. The individual had DCIS - along with 4mm of high grade HER2+ invasive cancer.  That's a completely differently diagnosis than pure DCIS.  

These day sometimes I do ask the questions or try to explain, and I think it's great when others do the same. But I've been burned a few times so often I just shake my head and move on, saying nothing.  

Hi everyone, National Cancer Institute is using Herceptin for DCIS with HER2+ cancers.  Please see their article:

Phase III Randomized Study of Radiotherapy with Versus without Trastuzumab (Herceptin) in Women with HER2-Positive Ductal Carcinoma In Situ Who Underwent Lumpectomy (NSABP-B-43

This trial is specifically for DCIS and women HER2 positive.

Just wanted to share this most recent information with you on treatment studies for DCIS and HER2+ .  While I had invasive cancer, a good friend of mine did have DCIS and was treated with Herceptin as in this trial.

Thought this may make for some interesting reading.

Thanks, all!

Bevin, the clinical trial info is interesting.  There actually are a couple of Herceptin trials for DCIS patients. (I actually thought that there were 3 but right now I can't find any info on a third). One of the two is completed - but no results are available yet - and the other, the one that you mentioned, is still recruiting.  

The existance of a trial suggests that there may be some potential of benefit for women with HER2+ DCIS to take Herceptin, but it's the purpose of the trial to prove - or disprove - this theory. So until the trial is completed and the results are available, we really don't know what the outcome will be and whether or not it will lead to the broad use of Herceptin for women with DCIS. There are some women here who are participating in the trials, which is great.  However as of today, most women diagnosed with HER2+ DCIS do not and cannot get Herceptin. And at this point we don't even know whether Herceptin provides any benefit to DCIS patients. 

HER2+ DCIS is a very frustrating topic. I keep hoping that some large definitive study will come out, but so far, nothing.  HER2+ IDC is very different. It's well studied and very well understood that HER2+ invasive cancer is more aggressive than HER2- invasive cancer. Because of this it is often (usually, in fact) presumed that the same applies to DCIS. This often scares DCIS women who find out that their DCIS is HER2+. That's very frustrating. The simple fact is that at this point we don't know if HER2+ DCIS is more serious than HER2- DCIS. The few small studies that have been done on this are all over the map - some show that HER2+ is more aggressive than HER2- DCIS, most show that it's no more serious, some show that it's less serious. Additionally, at this point, even if we were to presume that HER2+ DCIS is more serious, there are no approved treatments to address this - Herceptin is not approved for women with DCIS.   

The most important fact for DCIS women to remember is that pure DCIS is a pre-invasive cancer and therefore it cannot develop into mets - and this is true whatever the grade, whatever the size, whatever the surgery, whether ER+/PR+ or ER-/PR-, whether HER2+ or HER2-.  

The other important fact for DCIS women to remember is that those diagnosed with DCIS have a long term survival rate (even after any recurrence) that is over 95% and generally in the range of 98% or 99%.

Info on the two clinical trials:

Radiation Therapy With or Without Trastuzumab in Treating Women With Ductal Carcinoma In Situ Who Have Undergone Lumpectomy  Currently recruiting. 

Estimated Enrollment: 2000
Study Start Date: November 2008
Estimated Primary Completion Date: March 2019 (Final data collection date for primary outcome measure)

OBJECTIVES: Primary  To determine the value of radiotherapy with vs without trastuzumab (Herceptin®) in preventing subsequent occurrence of ipsilateral breast cancer recurrence, ipsilateral skin cancer recurrence, or ipsilateral ductal carcinoma in situ (DCIS) in women with HER2-positive DCIS resected by lumpectomy.

OUTLINE: Patients are stratified according to menopausal status (pre- vs post-), plan for hormonal therapy (yes vs no), and nuclear grade (low or intermediate vs high). Patients are randomized to 1 of 2 treatment arms.

Arm I: Patients undergo standard whole breast irradiation (WBI) over 5-6 weeks.
Arm II: Patients receive trastuzumab (Herceptin®) IV over 30-90 minutes once in weeks 1 and 4. Patients also undergo WBI as in arm I.

http://clinicaltrials.gov/ct2/show/NCT00769379?term=DCIS+and+Herceptin&rank=2 

Neoadjuvant Herceptin for Ductal Carcinoma In Situ of the Breast  Study completed.

Enrollment: 69
Study Start Date: March 2005
Study Completion Date: November 2010
Primary Completion Date: November 2010 (Final data collection date for primary outcome measure)

Primary Objectives: To determine the effect of a single dose of Herceptin (trastuzumab) on the proliferation rate of Her-2/neu over-expressing ductal carcinoma in situ (DCIS)

To evaluate the effect of a single dose of Herceptin on the apoptotic index of Her-2/neu over-expressing ductal carcinoma in situ (DCIS)

Primary Outcome Measures: Absolute Change in Proliferation [ Time Frame: Before and after single dose of Herceptin, approximately 2 weeks before surgery for ductal carcinoma in situ (DCIS) ] [ Designated as safety issue: Yes ]
Comparison of proliferation rates of Her-2/neu overexpressing cells before and after treatment with Herceptin where absolute change defined as difference of increase/decrease. 

http://clinicaltrials.gov/ct2/show/study/NCT00496808?term=DCIS+and+Herceptin&rank=1&view=record 

Beesie - just sharing that you've been a blessing to me too (I had IDC in one breast and DCIS in teh other).  I always felt confused about dcis because like you say, you read some people's tag line and it says dcis with 4 positive nodes.  What???  You've educated me and reassured me.  Thank you!

There is always confusion with these terms. They should rename DCIS to something else. But I have found that many women have DCIS areas along with their Invasive Ductal Carcinoma. DCIS cells actually have all the cellular charactistics of malignant cells they just haven't broken through the basement membrane yet. They may progress to do this or not. I think they should include HER2 status for DCIS on the path report. Not all DCIS is the same or will behave the same.