DCIS - tested for Her2 status?

Mantra

I was never tested for HER2 status. My doctor told me they don't do that test on DCIS. But now I'm wondering, if they did do that test and my tumor was HER2 positive, would my treatment have been different? Has anyone had their DCIS tested for HER2 and if it was positive, are you on Herceptin?

Deirdre1

My DCIS was tested for HER2 status... In my case I made the request for the testing so that if the tissue disappeared in the pathologists vault I would already have tested the tissue... It isn't considered "routine" with DCIS yet but so many doc's are now checking for it that it will be in the near future IMO..  Mine was negative, but I have the peace of mind of knowing that test is done IF my tissue disappears (which is a possibility - I watched it happen several times with my family's cancers)...  Best, Deirdre

Hindsfeet

I don't quite understand the her2 gene? I'm not sure if it was tested when it was pure dcis. Does dcis develop the her2 after it becomes invasive or was it always her2? This time on my pathology it clearly states her2 ... 3+   Not just her2+ but 2  3+

I wasn't for sure what the 3+ of the her2+ meant until I got in the mail yesterday the whole of my recent pathology. MY NP sent me not only the complete report, but a page with pictures of the slides they took. It also included a graph measuring low, med and high. High of course is 3+ of the her2gene. I didn't know there was a 3+.

What confuses me is ... is this gene a genetic or a gene the cancer develops? Why do some women get it and others don't? Maybe they should have dcis checked for the her2 gene, and if women have it that might encourage them to do more than a lumpectomy.

Hindsfeet

HER-2/neu Abnormalities in Ductal Carcinoma In Situ (DCIS)

HER-2/neu protein overexpression was first reported in in situ breast cancer by van de Vijver et al. in 1988 and was associated with the comedocarcinoma variant [6]. As seen in Table 6, numerous subsequent studies confirmed this relationship between HER-2/neu protein immunoreactivity and the high-grade and comedo subtypes of DCIS as well as with other unfavorable prognostic factors [62-73]. HER-2/neu protein expression has been associated with DCIS extent [68, 73], negative staining for hormone receptor proteins [65, 67, 71], high cell proliferation rates [64, 67], DNA aneuploidy [65], p53 protein overexpression [64, 67, 71], and association with invasive disease [63]. Given the increased incidence of the diagnosis of DCIS on breast biopsies generated by the detection of small lesions on mammography, there has been significant recent interest in prognostic markers that could further subtype the disease and guide follow-up therapy. As seen in Table 6, HER-2/neu abnormalities appear to identify a particularly virulent form of DCIS featuring a tendency for a high nuclear grade and comedo-type necrosis. Further evaluation of the HER-2/neu status in these lesions appears warranted to confirm whether this marker can be clinically useful in stratifying patients into low-risk groups which may be followed conservatively and high-risk groups that may require extensive post-biopsy surgical procedures to prevent recurrence and to rule out invasive disease with an aggressive phenotype.

http://theoncologist.alphamedpress.org/content/3/4/237.full

Hindsfeet

I found the above article enlightening. The idea that perhaps the her2 protein, gene can be identified in high grade dcis, como type warrants more aggressive treatment than lower grades of dcis. If I knew this information when comptemplating a mx vs lumpectomy without further question I would have had a mx the first time around. I did not underdstand until yesterday exactly what the her2+ meant. I assumed all invasive cancers were the same. Not so! About 20% of bc invasive cancers have the her2+ mutated gene. That means 80% of cancer dx aren't quite as aggressive.

No cancer is a good cancer. But, those dx with her2+ prognosis isn't as favorable

Her2+ is a very aggressive mutated gene. The drug herepcin locks onto the her2+ receptors which is suppose to control the growth of this gene. But, herpecin can damage the heart. As I understand the oncologist has to monitor your heart while taking the drug.

So yes...from what I understand right now if I were again dx with dcis, high grade, como n type, I would demand they test for the her2+ gene. And, if dx with it, at least for me lumpectomy would be out of the question. I would do the blmx.

My question now about the her2+ is this inherited or just a gene gone aray? My surgeon insists I have genetic testing.

TheLadyGrey

I agree with you about insisting on testing for the presence of HER.  However, I read on another thread that the status in situ may change if it becomes invasive.  In other words, unlike ER/PR status, HER receptivity may be different for the in situ stage than it is the invasive stage.  It is my understanding that that is the reason that HER testing is not routinely done on DCIS -- it is considered meaningless at that in situ stage given it can morph.

Hopefully Beesie will wander by to clear up any confusion on the morphing thing. 

However, if the HER+ is an indicator of potential aggressiveness, it seems sensible to at least do the test with Grade 3.  Even though HER is lose/lose for me, I wish I knew what it was because if I am HER-, understanding that is not static, I wouldn't be second guessing my decision to have a mastectomy, although why I'm second guessing it is a mystery -- it is not like I really have a meaningful choice.

Thanks for that informative article.  I thought I had read everything out there on DCIS.  I seriously cannot believe (1) that I am actually going through this, and (2) I'm having having to research it myself rather than a medical professional telling me the significance of the various factors.  Mind boggling if you ask me. 

I wish I could shake this feeling that there is something vaguely patronizing and paternalistic about the "system" (and I use the word loosely) for communicating with and treating the BC patient.  All those women in the colorful brochures doctors keep handing me look overly cheerful given the circumstances. 

Mantra

Evebarry, I just wanted to let you know that I did have genetic testing and my BRCA 1 and 2 tests came back negative. However, I can't help but feel if my tumor was tested, it would have shown HER2 positive considering it was high grade and ER/PR - and lots of other not so nice stuff (even though it was all DCIS). Having a BMX made me feel safe . . . until I started thinking about the unknown HER2 status and wondering if it was HER2 positive would more treatment have been recommended even though it was DCIS.

My sister who is stage III is HER2 positive. She is having genetic testing done in November. It makes me wonder if there is some yet-to-be-discovered genetic gene that we both have that caused us both to have aggressive cancer.

EDITED TO ADD - yes, I too am hoping Beesie will drop by too!

Diagnosis: 7/10/2009, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-

Mantra

TheLadyGrey, I haven't read your posts before. Are you saying you are booked for having a bilateral mastectomy? If so and you have any questions, please feel free to PM me. I vacillated on having the "healthy breast" removed for an additional 6 months after the first mastectomy and finally decided it was the right decision for me.

Hindsfeet

Mantra, I am not sure the Braca genetic test is the same as the her2+ gene. I don't believe you inherit the her2+ gene. I thought that it is a mutation that happens in the more aggressive high grade tumors. I would like to go back and look at my previous pathology reports to see if there was anything on the her2 gene.

I've never had the her2+ explained until now...just thought it was a hormone receptor that came along with all invasive cancers. DCIS girls needs to understand the possibility of being dx with it and what it means.

I'm trying to decide right now if to get a blmx or just remove the one now infected breast...even knowing of the her2 gene problem. My reasoning is recovery time would be less in removing one breast and later on do the other.  

Graylady...perhaps the testing for the her2 on high grade dcis might be meaningless, but might not? It seems that in the article the DCIS has been tested for the her2 gene. When does it morph and what makes it morph? Is the morphing part what gives it the invasive component? Or does it happen right before it breaks forth from the ducts or afterwards? The DCIS como type multiplies out of control which is characteristic of the her2+ gene.

Mantra

No, the genetic testing shows if you are genetically programmed and at high risk of developing certain type of cancers.

The HER2 is an additional test on the tumor. I can only assume that because I was ER/PR negative with comedo necrosis etc etc plus my tumors were multi focal and in two quadrants, that it was likely HER2 positive.

It's been a while since I had my surgery but I sort of remember my surgeon saying something about a DCIS tumor does not just become invasive. It has to change genetically to be able to become invasive and able to survive outside of the milk duct. So the DCIS tumor and the invasive tumor could be completely different. One could be ER/PR negative while the other positive.

I knew ER/PR negative is aggressive and I thought it was the most aggressive type. I didn't know anything about HER2 positive until my sister's cancer diagnosis. Her cancer grew so quickly. It doubled in size in two weeks and was in 16 nodes. And she is someone who is checked every 6 months because of me and was given the all-clear only 6 months earlier. When the surgeon told us it was HER2 positive I started to research it and found out it's characteristics.

Deirdre1

Her2 isn't my speciality so I too am hoping that Beesie drops by - that said I believe that she feels HER2 testing isn't necessary for DCIS.. That may be a Canadian position as here in the states many doc's are doing the Her2 testing..  Eve... you can still have your old tissue tested so you can be a bit more careful about your decision.. Just call your bs and tell her you need your tissue tested for Her2..  They tend to turn their noses up because it isn't EXACTLY part of the protocol but I feel that if a test MIGHT BE part of the protocol in the next few years I ask for it and I do believe that HER2 will be part of the protocol for testing biopsied tissue with a DCIS dx in the near future...

The lady grey:  Your comment about "patronizing and paternalistic .." isn't lost of me.. I had the same feeling - AND when you are all done with your treatment and if you have a bad outcome there is this "well it was your decision" attitude that just isn't present with other cancer treatments IMO...  I get it.. and you are not wrong!  If I were to do this again and since my BRCA was negative and I wasn't HER2 + AND since I had a relatively small lesion I would have focussed on the one breast being removed and not both... It is an incredible loss - I know I say that a lot but it is so true I am not wanting anyone else to experience what I experienced!  The ps promised a look he couldn't/didn't deliver, the bs promised a cut that was minimul i t wasn't, the oncologist wasn't necessary at all IMO - nice guy but did nothing to reassure me or discourage me, etc. etc... and then you will read articles written by doc's that suggest (hell they right out state it) WOMEN are MAKING these decisions as if we aren't being encouraged by doctors.. it is very patronizing and honestly I think we are being used for more surgeries, more medical bills and more pharmacuticals... I am only now, 4 years later, coming out of anger.. that's why I always suggest that someone in this position puts a therapist on their list of professionals... they are a part of the medical community but at least their role is to help YOU hear yourself.  Good luck to you all and I hope all turns out better than my situation!!!  Best, Deirdre

Hindsfeet

Deidre, the reason I am presently so interested in understanding the her2+ is because I have the gene and the surgeon said it means that the cancer I have is very aggressive. My ignornance, but before this dx I had the perception that all invasive cancers were her+.  I'm dx with dcis and idc. I have no idea of the staging. I'm not sure they test the dcis in my breast for the idc for her2...perhaps both.

The question Mantra put forth should those dx with high grade dcis be tested for her2 gene. Deidre, if they can test for it then the grade 3 como type should be tested for her2. If it is positive there is no question to what type of surgery you should have. If I had any idea how serious the her2+ gene is...for sure I would had demanded my high como type dcis be tested. It is importance to know one way or another. if I had known, I might not be in the situation I'm in now. I took dcis lightly and now for me its a life threatening disease.

Here are the stats from my biopsy.

Moderately differentiated invasive ductal  carcinoma.

Ductal carcinoma in-stu, solid type with comedo necrosis, high nuclear grade

Microcalifications, present and associated with in-situ carcinoma

Estrogen Receptors ... positive

Percentage of positive cells 96%

Progesterone ...positive 29% ...

C-ERB 2 statue: positive 3+ (her2)

Proliferative Rate )MIF-167) High (21%)

Gross description

The specimen is received in formalin labeled "XXX right breast" and consists of eight dominant cores of figoadipose tissue up to 2 C

rn4babies

My MO and RO were pushing for me to participate in a HER2 clinical trial because I also had Grade 3 DCIS with comedo-necrosis. They would have sent for my slides and had them tested for the HER2 status. Had it been positive, I would have been eligible for the clinical trial and possibly placed in the randomized group to receive 2 doses of Herceptin. I declined because it would have delayed my Rads for another month. My employer is getting impatient for me to start my treatments for scheduling reasons. Now that I've read these posts, I think I would have like to have had it at least tested. I still could have declined the trial. My surgeon completely blew off the fact that it was an agressive Grade 3, my MO was VERY concerned about it.

TheLadyGrey

What's an MO?   Can't be modus operandi....

I know comedo necrosis, grade and ER/PR- can be indicative of more aggressive carcinomas.  HER2 status is new to me.

In my ongoing quest to scare myself to death thereby avoiding the UMX scheduled for Thursday, I re-read my pathology report and noticed this notation for the first time:  Proliferation Index (MIB-1):  30%.

Dr. Google is NO HELP! I can't find any source that lays out the scale.  Does anyone know what that means? 

I'm at the reminding myself to breath stage....

rn4babies

MO is medical oncologist.

Hindsfeet

Graylady, I'm not sure on this, but from what my surgeon said anything over 20+ is high. At least this is what I understood. Were both your breast infected with dcis cells? It is so easy to flip flop. I flipped flop a lot when first dx. And, from I'm read como necrosis is indicative of high proliferation, which is more likely to advance to a aggressive invasive cancer. Again, I would have the highgrade como n type tested for the her2 gene.

BTW... I had a mri less then a year ago...I do believe the present tumor existed then...it was hidden behind a scar. Even mammo's miss tumors and dcis. My second lumpectomy found one lesion, but the final patholgy report spotted high grade como throughout the breast tissue taken out which was about a quarter of the breast.

 I'm considering unless the upcoming mri shows differently right now only removing the infected right breast. Not that I'm not willing to do a blmx, but the recovery time for double is not duable. right now, Perhaps later. I'm spending a little more time trying to process all the information before making surgery decisions. So, I understand the pressure you feel as I'm feeling it right now. I feel as if I'm studying for a final. I don't want to follow the pipe pipper. I need to know what, how, why and all the risk factors.

You are going to do well because you are a thinker. Just make sure you make it very clear to your surgeon what you expect such as good cosmetic results, yes/no node removal, yes/no removal of nipple. Make sure it's written on the surgical concent form.

Deirdre1

Oh YES - try to keep the nipple WHENEVER possible!!!  That will help your brain adapt to the new shape of the breast better IMO... I wasn't able to find a local surgeon who could do that in 2007, but I would go half way around the world if I could do a "do over" and get my nipples in the deal!  You all have such a difficult decision - I'll be thinking about you all!!!  Take good care of yourselves!!!

hawaiik

My doctor also told me they do not test for Her 2 Nu  or BRCA for DCIS . I also asked about BRCA since my Grandma had breast cancer and my Mom had lung cancer( not the kind you get from smoking) she never smoked or lived with a smoker.My Uncle also has prostate cancer. I feel discriminated against since, my sister who now has a sister with breast cancer would "qualify" for genetic testing and I the one with the actual cancer does not because I do not have a 1st degree relative , mom or sis etc, that had breast or ovarian cancer. Weird. Does anyone else find this a little bit illogical?

Hindsfeet

hawaiik, in most cases dcis does not need to be tested for the her2 gene, but if the biopsy report shows high grade como necrosis then for sure I would demand it was tested for the her2 gene or find another doctor who will. That could be the determing factor if you need a mx rather than a simple lumpectomy.

mom3band1g

hawaiik - I was offered the BRACA testing.... 

Hindsfeet

hawaiik, me too. The bc surgeon and the oncologist I visited suggested the Brac test and again my new bc surgeon ask me to do a BRACA test. The surgeon said since my recurrences are so close together that she suspects a genetic link.