ILC ER+ PR- HER/2 - treatment options

LAM2009
LAM2009 Member Posts: 31
edited June 2014 in ILC (Invasive Lobular Carcinoma)

My mom just underwent a double mastectomy for multifocal ILC of L breast yesterday.  I am a little confuled (actually alot confused) by all the Hormone Receptor tests and how to interpret them.  There were 0 nodes involved (a Sentinal biopsy was done) she was ER+ PR - and the HER/2 report said 1+ not overexpressed.  I believe this means that the HER?2 would be - if it is NOT overexpressed.  I am wondering the treatment course for anyone with a simular DX.  She had a general sergeon and I am finding it very difficult to get information.  Also, any thoughts on if an ONCOtype DX test would be useful.  Thanks.

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  • nash
    nash Member Posts: 2,600
    edited February 2009

    You're correct--your mom is HER2 negative.

    The Oncotype DX test is for node negative tumors that are ER+, so the PR- shouldn't make any difference. The test gives a recurrence score (in a low, intermediate or high range) that indicates how likely the cancer is to metastisize and how likely it is to respond to chemo. A low score indicates that the tumor is very sensitive to hormones, and is likely to respond better to hormone therapy than to chemo. A high score is the opposite--there is likely to be a high benefit from chemo. An intermediate score puts one in a grey area. Other prognostic factors like tumor size and grade, patient age, etc. are taken into consideration in all cases.

    You can read more about the test at www.oncotype.com (sorry I can't post live links with my browser). Your mom is the perfect candidate for it.

    Do you know the grade of your mom's tumor? Most classic ILC are a grade 1, and having the Oncotype done and receiving a low score would cement the decision to do hormone therapy rather than chemo.

    We have some girls with multifocal ILC tumors who are offered chemo b/c of the multifocal issue, so that is something to address with the onc. Has your mom seen an oncologist yet?

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  • gracejon
    gracejon Member Posts: 972
    edited February 2009

    This is pretty much what I had in 2004.I had a bilateral mastectomy.  I had 4 cycles of dose dense A/C and have been on an aromatase inhibitor since.  The breast center I go to does not grade ILC.  Your mom is a candidate for oncotype Dx testing and should be very helpful.  What does the surgeon suggest as treatment?

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  • LAM2009
    LAM2009 Member Posts: 31
    edited February 2009

    Nash and Gracejon

    Thank you so much for the reply.  We have not seen the Oncologist yet, I am hoping by the middle to next week to have an appointment.  Her surgeon does not handle any oncology stuff so will see another doctor who will follow her.  I was really hoping since the nodes were 0 and she opted for BM and was ER+ she would just need the hormone therapy and not Chemo.  I have requested an oncotype DX test on her. (I hope her surgeon with order this, I don't think it was ordered at the time of surgeory)  She has a very experienced surgeon who is known around our area for being great with breast issues.  However, he is closed mouthed about supplying information regarding any further treatment.  He did say that he thought Chemo probably was going to be the way to go since it was multifocal.  I am a little concerned and confused about the PR-, not sure how this relates to the ER+.  My mom is 62 and is just handleing getting throught the DM right now.  I am the one who has to research everything and ask all the question since her surgeon doesn't willingly provide any information.   Gracejon what do you mean by 4 cycles of dose dense A/C and aromatase inhibitor.  I am new to this DX we have never had anyone in our family go through anything like this.  I am an only child and my mom and dad depend on me to help make decesions for treatment.  My mom has not read ANYTHING about her DX.  I just want to make sure she is given the best course of treatment to there is no reacurrance.  Oh and I have four small children.  I never expected to go through anything like this with my mom until she was older and my children were grown.  It has been exhasting researching everthing and it can be so mind boggleing and confusing.  Thanks for the help and all the information.

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  • nash
    nash Member Posts: 2,600
    edited February 2009

    LAM, I feel for you. I am also an only child, have small children, and went through cancer with both of my parents (who unfortunately both died). My mom and I were on chemo together the last year of her life. It sucked. And having been on both sides of this, I have to say that it was much harder emotionally for me with my parents' cancers than with mine .I did all the research and asked all the questions, too. So I know where you are with this right now. Hang in there.

    Your mom, however, has a good prognosis with negative nodes, so don't start worrying about her dying. You were smart to ask the surgeon to order Oncotype for her. Odds are that the score will be low and that she can just do HT. 

    Ask the onc about the PR-. On this site, it says that being PR- drops the response to hormone therapy from 70% (for ER+/PR+) to about 33%. So that would translate into a poorer prognosis. But I know of other PR- women on this site whose oncs didn't seem too concerned about the receptor status. That's where I think the Oncotype will be especially handy in your mom's case.

    If she does have to do chemo, it is doable, and they have all sorts of anti-nausea drugs to help one through. But one step at a time. 

    You are a good daughter, and your mom is lucky to have you helping her.

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  • gracejon
    gracejon Member Posts: 972
    edited February 2009

    Hormone therapy after menopause for this positive ER+ is usually an aromatase inhibitor   The first choice is Arimidex but there are others.  I am on this med and my oncologist has never been too concerned about the PR negative part since they feel it is worthwhile with any part of the tumor being positive.  The A/C is chemo.  It stands for adriamycin and cytoxan and is used fairly frequently.  Also it has been around for years and years.  Dose dense is just a quicker course and the chemo is given every 2 weeks.  There is all sorts of recipes for different kinds of chemo and how often it is given.  If we took a survey I bet no one would say it was easy but most would say they expected chemo to be worse.  I was pretty surprised that I didn't feel bad and did work through it.  Your mom is very lucky to have you. 

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