DCIS with hormone negative receptor

Shelia, I had the same dx that you have DCIS, grade 3, ER-/PR-. I opted for a bilat mast. One reason being the hormone status along w/ family history. I have had my exchange surgery 9/9 so I'm on the downward slope of tx. My BS had my tissues retested from my mast to double check the hormone status, I haven't heard back any results. Fine w/ me because I don't really want to take Tamoxifen. I had no node involement either.

I think DCIS that is hormone neg is alittle unusual. I asked the same question on here about a 2mos ago, look under DCIS that is er-/pr-. Good Luck

There is another school of thought that the hormone testing for DCIS isn't all that reliable. SharonCorrea, who had her stuff sent off to Hopkins, talked with the Oncs there and they weren't too taken with hormone testing on DCIS, instead considering it all to be hormone positive no matter what the testing showed.

However, what I think about women and bilaterals is that if a gal even considers it then she's good to go. So I think you've made the right decision for yourself, but if you're having doubts you should hesitate, not because of the hormone status of the DCIS but because you're wondering if it's right for you.

Hi Shelia,

This topic is of interest to me too, having only just recieved my path report yesterday following mastectomy 4 months ago. I'm also er/pr -

I looked up the question on the John Hopkins Hospital 'Ask The Expert' forum and found this...(I hope it's okay to copy/paste from another site!)

Qu33n, yes, the reason it shouldn't be done (or at least, the reason the results shouldn't be given to patients) is that it's meaningless, at least for now, based on current medical knowledge. 

While the nature of HER2+ invasive cancer is known (at least to some extent), there is conflicting information about what HER+ status means to DCIS.  Some studies suggest that HER2+ status doesn't impact DCIS progression or aggressiveness, some studies suggest that HER2+ status means that the DCIS may be more aggressive and more likely to become invasive and some studies suggest that HER2+ status means that the DCIS may be less aggressive and less likely to become invasive. None of these studies have been large enough to be conclusive.  The only thing that is known is that DCIS is about it's twice as likely to be HER2+ than invasive cancer. 

A second reason why HER2+ status is meaningless is because it doesn't impact treatment.  Herceptin, which is the drug used to treat women with invasive cancer that is HER2+, isn't approved for women who have DCIS.  There are studies underway on Herceptin with DCIS women, but I believe these are recent studies, which would suggest that it could be years before any results become available.

Lots of women who have HER2+ DCIS worry about this, and so I appreciated seeing the comment from Lillie Hockney at Johns Hopkins.  Providing HER2 status on a DCIS pathology report does nothing but create a potential area for confusion and concern.   On the other hand, I do think that there is a reason to test DCIS tissue samples, at least for those of us who went through teaching or research hospitals.  It would be good if more was understood about HER2 status and DCIS and the only way to find this out is by testing the removed breast tissue and correlating HER2 status with other pathology factors, with the likelihood for microinvasion, with the longterm recurrence rate, etc.  Without having the HER2 information on file, none of this can be done.  So hopefully all of our samples are tested, but there really is no reason, at this time, to provide the HER2 status information to the patient.

Beesie,

Thanks for the info. on HER+; I was tested for that (DCIS) and was wondering about that and unable to find much info. on it.

Sheila,

I wanted a lumpectomy, at first.  I had it done twice and both were unsuccessful getting clear margins.  My mastectomy was the right decision in that the CA was throught my breast.

I did not get a double mastectomy, and wonder at times, if I did the right thing.  I guess there are pros and cons to both choices.  BC does not run in my family and I was told my chance of getting BC in good breast is 2% more than other women.  I just had my MRI and all things were clear!

Good luck to you! Keep us posted.

JMJ

I had a double mastectomy.  I was dx with DCIS, but decided to have gene testing.  Ended up being BRCA1+.  By that time, I had met with my BS, the onc, PS and had 2nd opinions.  Even if I wasn't BRCA1+ I was still leaning toward getting the double mast.  I am VERY HAPPY with my decision. 

Go with what you feel is best for YOU!

GOOD LUCK!!!!!!!!

Shelia - I was diagnosed with high grade DCIS back in March. The biopsy showed that it was intermediate cancer, receptors negative. Then the lumpectomy showed comedo necrosis. Since the margins were not clean and there was another area of suspicious calcifications, I decided on a mastectomy on my right breast. Another factor was I am very small and my tissue is dense.

The oncologist told me that because of the mastectomy and my negative receptors, no further treatment (radiation, chemo or tamoxifin) was needed. I had the mastectomy with an expander at the end of April. Just yesterday, I had the expander removed and a saline implant put in.
I can say flat out that there is a lot of information out there and you don't know what to believe. What helped me a great deal were these 3 books:
- Dr. Susan Love's Breast Book - extremely informative.
- The Breast Reconstruction Guidebook by Kathy Steligo - She basically takes you through the expander/implant process as well as tram flap and diep methods.
- The Breast Cancer Survivor's Fitness Plan by Carolyn Kaelin - Covers diet and exercise.

Also, this month on September 22-24, 2009, there will a conference on the Diagnosis and Management of Ductal Carcinoma In Situ (DCIS) in Bethesda, Maryland. This site has the info:

http://consensus.nih.gov/2009/dcis.htm

The conference is sponsored by the NIH and registration is free. You don't have to actually attend the conference because it will be broadcast on the web. You can also request the conference reports by clicking on Can't Attend? on the left side of the web site I mentioned.

Best of luck with your treatment. The long term prognosis for DCIS is very good.

Hello ladies- I have read all of your posts from a few years ago and have learned today that I have DCIS, grade 3 and am hormone receptor negative. I have 3 young daughters and am terrified for them. While awaiting BRCA results, I am wondering if most ER-/PR- are BRCA+. Would you mind sharing if you find that to be the case? I have foundresearch that as much as 97% BRCA1 are hormone receptor negative, but I am unable to find what % of ER-/PR- are BRCA+. Thank you.