DCIS Stage 0 ER/PR NEGATIVE Grade III

klposton51

I am so confused. Today I was told that, along with the DCIS Stage 0 breast cancer (microcalcifications found on mammogram, 5 cm), I have negative ER and negative PR receptors Grade III.  I started researching and don't find much information.  I do see "Triple Negative Breast Cancer."  Are these one and the same?  In other words, if I am ER & PR negative, does that mean I have Triple Negative?  My oncology doctors did not mention Triple Negative.  I am so worried because I see very bad things about triple negative.  They have me scheduled for a lumpectomy this Monday, March 13, 2017, followed by 20 rounds of radiation. Since my type won't respond to hormone therapy, that is not included.  I am wondering so many things.  Any advice is appreciated!

MinusTwo

klposton - Triple negative includes ER, PR, and HER2. If they have not tested for HER2 over expression, they definitely should. It's not standard for DCIS, but I wish I'd pushed more. There are a couple of really good treatments if your HER2+. Like you, I was ER/PR negative - so no hormone therapy. But because I was HER2+ there were additional avenues open. If you are HER2+, it might be beneficial to have neoadjuvant chemo - before surgery. I'd make sure to get an answer before you move ahead. In any case, if you're doing only a lumpectomy, radiation is normally required.

You should try to stay away from dr google. There is lots of outdated & bad information, and definitely some scare stories. You can read lots about TN on this site, or HER2+, and it is a much safer place.

MTwoman

Klposton51, I had DCIS which was triple negative. It actually meant that Tamox wouldn't be helpful to me, so I didn't have to do that after surgery. I also had multi-focal disease, which meant MX instead of LX (which was my first choice). At the present time in the US, Herceptin is only being used for HER2+ DCIS in trials, so is not an available option (someone will correct me if that has changed ).

I initially had a lx + SNB as we wanted to avoid a second surgery if we found any invasive cells. After a second opinion on my pathology, it was recommended that I have an mri as the architecture pattern of my DCIS is notorious for multi-focal presentation (and I was 38). There were 2 more areas of concern found in other quadrants and were subsequently found to also be DCIS. That meant mx for me, so another surgery. But in DCIS they do not recommend rads after mx, so after my reconstruction, I was finished and have been NED for 14 years.

DCIS is catching bc as early as you can. Please message me if you have any other questions. ((hugs))

BarredOwl

Hi klposton51:

Please do not hesitate to contact your team today to ask the following question: "Does my biopsy show apparently pure DCIS with no evidence of invasion?"

I also recommend that you obtain a copy of the complete pathology report from your biopsy for your review and records, and you can confirm it against what you are told.

Then, if your current diagnosis is apparently pure DCIS (based on minimally-invasive biopsy), then proceeding at this time with lumpectomy would be wholly appropriate. This is true regardless of receptor status.

BarredOwl

BarredOwl

DCIS is routinely tested for ER and PR status. DCIS is not routinely tested for HER2 status.

Regarding current HER2 testing practices in pure DCIS, in general, the National Comprehensive Cancer Network (NCCN) guidelines for Breast Cancer (Version 2.2016) do not recommend routine assessment of HER2 status for pure DCIS. This appears to reflect the current level of evidence regarding its value as a prognostic marker in pure DCIS, and that HER2-targeted treatments are not used in the pure DCIS setting (emphasis added):

"Although HER2 status is of prognostic significance in invasive cancer, its importance in DCIS has not been elucidated. To date, studies have either found unclear or weak evidence of HER2 status as a prognostic indicator in DCIS.[42-45] The NCCN Panel concluded that knowing the HER2 status of DCIS does not alter the management strategy and routinely should not be determined."

In accordance with current treatment guidelines, many patients with pure DCIS do not receive HER2 testing.

BarredOwl

BarredOwl

Hi MTWoman:

I write regarding systemic treatment of DCIS with drugs.

I agree with your comment that the use of HER2-targeted agents (such as trastuzumab (HERCEPTIN)) for pure DCIS is strictly investigational and is not used in current clinical practice. This is because clinical consensus guidelines for the treatment of pure DCIS from the American Society of Clinical Oncology (ASCO), National Comprehensive Cancer Network (NCCN), as well as Canadian (e.g., CCO) and European (ESMO) organizations, do NOT include such treatment, either prior to surgery ("neoadjuvant") or after surgery ("adjuvant").

Patients whose total pathology results (from all biopsies and surgeries) establish a definitive diagnosis of pure DCIS (pathologic Stage 0 disease) are never offered chemotherapy and/or HER2-targeted treatments under current treatment guidelines.

If the pure DCIS is either ER+ and/or PR+, then they may be offered endocrine therapy (e.g., tamoxifen or an aromatase inhibitor).

BarredOwl

MTwoman

Yes, thank you BarredOwl, I know. I was just responding to MinusTwo bringing up HER2 positivity and potential neoadjuvant treatment as a possibility. I was trying to let klposton know that, for DCIS, there really isn't a neoadjuvant option; even though she may see some women here have Herceptin on their tag line or may discuss having used it for DCIS. This was confusing to me when I first saw it here, but have since found out that they were part of clinical trials.

ElaineTherese

Hi!

If your tumor is purely DCIS, neither chemo nor targeted therapies like Herceptin or Perjeta make much sense. Chemo and targeted therapies are designed to address cancer cells in your bloodstream and/or lymph system. If your tumor isn't invasive, then cancer isn't in your bloodstream and/or lymph system.

After your operation, your lump may be deemed to have an invasive component. At that time, your doctors should test whether that component is triple negative or HER2+ and go from there.

Best wishes on a successful surgery!

LAstar

My DCIS was ER+/PR-. My oncologist told me that the hormone receptor status can change from positive to negative as the DCIS gets closer to changing to invasive. I don't have any references on this, and I probably have the terminology wrong, but it's an interesting concept if true.

MTwoman

LAstar, I remember you writing about this once before, but haven't been able to find anything on PubMed about it. I am really curious to read the supporting lit if you ever find the citation. They are certainly studying DCIS progression, and I've seen some really interesting things published in the last 6 months, but nothing on receptor status changing as the tumor progresses; only architecture types and how they change, which types are considered "end points", and the different characteristics that might make one have a higher likelihood of moving towards invasion.

MinusTwo

BarredOwl and MTWoman - thanks for your knowledgeable posts. I do understand they do not test DCIS for HER2+. Ergo, my BMX was done with no further treatment. I am ER/PR negative so there was nothing at all to follow up. Since I did have a recurrence before 2 years and it had morphed to IDC in a lymph node and was HER2+, I was just musing that I wish the docs WERE testing DCIS for HER2+. But since there is no recommended treatment even if tested, it would have been a crap shoot whether to do chemo or rads or whatever.

Beesie

MinusTwo, the issue is not that DCIS is not being tested for HER2 status.

The issue is that no one yet understands the significance of HER2 status for DCIS.

Therefore to suggest that someone with HER2+ DCIS should consider Herceptin and/or chemo might be suggesting treatments that are totally unnecessary and that may actually do more harm than good (since these treatments come with the risk of significant and possibly serious side effects).

It is well understood that HER2+ invasive cancer is more aggressive than HER2- invasive cancer. But the same is not known about DCIS. What is known about DCIS is that it is not the same as invasive cancer in many ways in terms of how it develops and progresses, and it doesn't always react the same way to various drugs and treatments. As a result, our knowledge and understanding about invasive cancer cannot be automatically applied to DCIS.

What is also known about DCIS is that a higher percentage of DCIS cases are found to be HER2+ as compared to the percent of invasive cancer that is HER2+. Why is this? No one yet knows. And what does it mean? No one yet knows.

Since most invasive ductal carcinoma (the most common form of invasive cancer) starts as DCIS, would we not expect more IDC to be HER2+, since so much DCIS is HER2+? We'd expect more of those HER2+ cases of DCIS to progress to become HER2+ IDC. So then how can it be that fewer cases of IDC are HER2+? No one yet knows.

There have been lots of studies done comparing the likelihood to progress of HER2+ DCIS vs. HER2- DCIS. The vast majority of those studies have found no difference between the aggressiveness of HER2+ DCIS and HER2- DCIS. A few studies have found HER2+ DCIS to be more aggressive and more likely to progress, but then another few studies have found HER2+ DCIS to be less aggressive and less likely to progress.

Here are a couple of the most recent studies, one with a finding that HER2+ DCIS may be morelikely to progress, and one with a finding that HER2+ DCIS is less likely to progress.

From 2015, HER2+ significantly less likely to be associated with recurrent invasive cancer: https://bmccancer.biomedcentral.com/articles/10.11...

From 2016, HER2+ associated with other factors (age, high grade, low ER/PR) that suggest the possibility of greater risk/likelihood to progress: http://onlinelibrary.wiley.com/doi/10.1111/tbj.127....

I wish we had the answers about HER2+ DCIS, but I've been following this stuff for 11 years and we appear to be no closer to the answer today than we were 11 years ago, despite a lot of researchers looking into this. Fortunately they are continuing to work, so hopefully the answers will come. But for now, I'd say it's certainly premature to suggest that HER2 status has any significance for DCIS or should drive the consideration of other/additional treatments.

MinusTwo

Thanks Beesie. Very thorough & detailed. i appreciate the info.

kae_md99

my DCIS in the left breast has a " small focus suspicious of microinvasion" per pathology... it was never tested for her2 status. but it is 100% er pr (+). i asked my MO if it is starting to invade will the taxotere and carboplatin prevent it from being more invasive while i get TCHP before surgery and she said yes. i cant feel the lump as it is tiny but i guess i will know more if the chemo attacked it after surgery...if it is her 2 (+) then hopefully the Perjeta and Herceptin will also take care of it.i will be in lupron once approved by insurance and will be on arimidex after my treatment.. DCIS really puzzles me as i thought it cannot spread. interestingly i have DCIS and IDC on the right beside each other and i wonder if my IDC started with a DCIS that became invasive.

Suzi_4

kloposton 51 i woz diagnosed with dcis high grade and i did had lumpectomy 3 weeks ago im er neg pr neg my doctor told me to start tamoxifen how are you going did you had rad thanks

Suzi_4

MT - women please im like you with same problem please i won if i can contact you o i give you my number thanks

klposton51

I ended up having three lumpectomies to get clear margins. Then I had 20 rounds of radiation. I had a six-month (from time of diagnosis) mammogram and it was clear. I still worry it will come back but I think we all do that. Thank you for asking! How are you doing

klposton51

Why would they start you on Tamoxifen if you are ER/PR Negative?

Suzi_4

I'm getting better I'm starting radiation 4 week and start on tamoxifen my doctor sad don't worry for yours pr- er- neg

pupmom

Suzi4, that makes NO sense. Tamoxifen is NOT given to people with ER- cancers.

MTwoman

I agree with PupMom. And I run away from Doctors who tell me "don't worry". It is YOUR health. The evidence on benefit of using Tamoxifen for ER/PR- dcis is NOT convincing. Please do rethink this, or seek another opinion.