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Topic: ER-/PR- Treatment & Recurrence Risk

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

Posted on: Dec 29, 2011 03:50PM

CarolSS wrote:

Hi - I am ER-/PR- (Estrogen/Progesternoe Receptor negative). I have been reading and rather than being hormone driven, receptor neg. DCIS cell growth has an uncertain etiology. The literature indicates that recurrence of DCIS or invasive is significantly higher in ER-/PR-. So my first question is whether anyone knows the literature on this and if the majority of people with receptor negative DCIS have recurrence (i.e., are we at significant risk of recurrence regardless of other risk factors such as grade, size, necrosis and clean margins)?  Up until now I thought my risk of recurrence was relatively low given my risk factors (<1cm, intermediate, clean margins, and single cell/focal necrosis, not multifocal) plus I am doing rads. But now I am concerned that the the neg. receptors trump the other risk factors putting me at much higher risk - but how much I don't know.

Also - since hormone therapy is of no use in people who are receptor neg., is there anything else to consider?  I have not seen a MO because I was told there was nothing else I could do, however, now I am very concerned about recurrence and there isn't anything else to do. I do realize I can't change or control that I am receptor neg. so worry won't help, however I want to be realistic about my risk moving forward from treatment (although I will be followed every 6 mos. regardless).

 BTW - I am positive for HER2. Also my path report says "Normal duct epithelial cells adjacent to the carcinoma are positive for Estrogen and Progesterone Receptors". Not sure how this plays into things.

Appreciate any input and experiences of others with ER-/PR-.

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Dec 29, 2011 07:46PM cycle-path wrote:

Carol, although I don't know a lot about hormone-negative BC, I do know that the Cancer Math calculator takes hormone status into account. You might go over and play around with it to see what difference it makes according to its calculations. 

Has your MO suggested Herceptin? Once again I have no real knowledge about this myself except that it's used on HER2+ tumors. But maybe only for invasive cancers...? 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE.

Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Dec 29, 2011 08:45PM Beesie wrote:

My first question is whether anyone knows the literature on this and if the majority of people with receptor negative DCIS have recurrence (i.e., are we at significant risk of recurrence regardless of other risk factors such as grade, size, necrosis and clean margins)?

The answer is a big fat "NO", the majority of people with DCIS who are ER-/PR- do not have a recurrence. Smile  

Reading this board, you might think that recurrences are very common. They aren't. The numbers vary but I believe on average the recurrence rate after a lumpectomy for DCIS (usually accompanied by radiation) is in the range of 8% - 12%.  The recurrence rate for those who have ER-/PR- DCIS might be higher but even at that, the majority of ER-/PR- women do not have a recurrence.

As for HER2 status, while it is known that HER2+ invasive cancer is more aggressive than HER2- invasive cancer, there is no such definitive understanding of how HER2 status affects those with DCIS.  Herceptin, which is the drug used to treat HER2+ invasive cancer, is not approved for those who have DCIS (although there are 3 clinical trials underway).

Here is a recent article that summarizes much of the DCIS research on this topic: Biological Markers in DCIS and Risk of Breast Recurrence: A Systematic Review  http://www.jcancer.org/v02p0232.htm

About ER-/PR- status, it says:

"We identified 16 studies (2,470 total patients) that evaluated the relationship between ER expression and risk of local recurrence (Table 9). Four of these studies revealed an association between ER-negative DCIS and risk of local recurrence."  This means that 12 studies did not find that ER- DCIS is more likely to recur than ER+ DCIS.  Of the studies that did find a higher recurrence rate, 3 seem to have results that may be muddied by other issues (a majority of many patients with close margins, lumpectomy without radiation).  Here is a summary of one study that is a bit cleaner:

"In the third study that found a relationship between ER-negative DCIS and risk of local recurrence, Roka et al evaluated 132 patients with DCIS treated with breast-conserving surgery without (n=33) or with whole-breast radiotherapy (n=99) and found that patients with ER-negative DCIS were more likely than those with ER-positive DCIS to have a local recurrence (12.2% vs. 3.7%, Table 9) [23]. This study provides clinically useful information in that it gives an absolute difference between the rates of local recurrence in patients with ER-negative and ER-positive DCIS treated with surgery and radiotherapy: about 8.5%.


About HER2 status, this article says:

"We identified 15 (2,365 total patients) studies that evaluated the relationship between HER2 expression and local recurrence in DCIS. Eleven of these studies revealed no significant correlation between HER2 and disease recurrence. "  The results here are a bit too complicated and varied to summarize however I will say that in a couple of the studies, the combination of ER- and HER2+ was determined to be associated with a greater recurrence risk.  One of these studies did not have statistically significant results; the other did but this was a study where the patients were not treated with radiation.

Lots of data; no clear results.  But overall, back to the question, most women with DCIS do not have a recurrence, whatever their hormone status.  Personally if there was one factor that I would be focussed on, it would be margin size.  The larger the margins, the lower the recurrence rate - and I believe that is true whatever the hormone status.  

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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Jan 6, 2012 02:11PM CarolSS wrote:

Bessie - Thanks so much for the very helpful information on ER-/PR-. It is so easy to lose prespective reading discussion boards and the literature esp when you are stressed out to begin with and worried about everything. I think it is always a good thing to remind people on the boards that posts don't typically represent what happens to the majority of people.

 I spoke with my RO on Monday and she helped me gain perspective on the receptor negative issues. I plan to see a MO to help better understand and be sure nothing was missed as far as treatment. I only have 2 more of my 30 rads and am very glad I did full breast rads plus boosts given the pattern DCIS can sometimes take in the breast. And the rads have not been bad at all - over before you know it.

Bessie - the time you take to help women on these boards is to be commended - you give of your time to help others going through one of the most difficult times in their lives and you have made a difference in people's lives through your help and knowledge. Thank-you so much for being here for us.


Dx 10/13/2011, DCIS, <1cm, Stage 0, Grade 2, ER-/PR-