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Topic: Does progesterone negative bc respond to AI's?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Feb 16, 2008 02:36AM - edited Feb 17, 2008 02:21AM by Gitane

Gitane wrote:

Hi, I'm new here. This is my first post. I'm so glad to have found a place where I can share with others. I have been treated for pleomorphic lobular BC and am very worried. Aren't we all? Mine is progesterone negative. I recently read that a sub group analysis of the BIG-1-98 study showed that the level of progesterone receptor staining may affect the response to AI's. The tumors with no staining at all, like mine, don't respond well, if they respond at all. I believe the progesterone negative cases had a 21% relapse rate at 4.5 years out. Does anyone else know about this?

I would really love to get more information if anyone has it. Thanks to you all. I've learned so much reading what you have written.

I'm adding a way to get to the location of the information. What is much more interesting than this abstract are the "slides" that are available to go with the presentation. They contain graphs that show the difference in DFS between PgR + and PgR - . Quite a surprise to me that the difference is so great.

Central assessment of ER, PgR and HER2 in BIG 1-98 evaluating letrozole (L) compared to tamoxifen (T) as initial adjuvant endocrine therapy for postmenopausal women with hormone receptor-positive breast cancer. B. B. Rasmussen Abstract - No. 538    2007 ASCO Annual Meeting - Category: Breast Cancer--Local-Regional and Adjuvant Therapy - Adjuvant Therapy Log in to post a reply

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Feb 16, 2008 11:37AM snowyday wrote:

HI Gitane:  I would love to read that study it does sound interesting.  Are you triple negative?  I'm hormone negative and want to learn as much as possible about it. I wish I could answer your question, instead I'm asking for information, sorry. Pearl49

PN Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Feb 16, 2008 01:13PM Diana_B wrote:

Hi Gitane,

I don't know much about ILC, but I'm on AIs and I have a PR- tumour and it's responding to the AIs.

However, are you ER+? I did not respond to tamoxifen and I've heard that quite often that many PR- women don't metabolize it well.

Darya Originally diagnosed Feb. 06. Recurrence Nov. 2007 Dx 11/22/2007, IDC, Stage IV, Grade 3, 4/20 nodes, mets, ER+/PR-, HER2-
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Feb 17, 2008 12:34AM jenni__ca wrote:


here is an article discussing ER+ but PR- etc

i'm ER+, PR-, stage 3a, ILC, very large tumor

ILC, multifocal, 7+++cm, ER+, PR-, HER2-, 1/4 nodes, stage 3A ...16 years !!!!!! and counting....
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Feb 17, 2008 01:34AM otter wrote:

That article in BCO is not very encouraging.  Try this one instead.   it's a paper on response to tamoxifen and/or AI in postmenopausal women whose tumors are ER+ PR+ versus ER+ PR- :

Cancer 2006  106(12):2576-2582

The authors reported that postmenopausal women with node-negative ER+ PR+ tumors that were treated with tamoxifen for 2 yrs followed by crossover to AI had a 10-yr disease-free survival of 84.3% (compared with DFS of 82.2% with AI alone).

In contrast, women with node-negative ER+ PR- tumors did better on AI alone (no tamoxifen).  Their 10-yr DFS was 90.5%, compared with 88.2% in the crossover group that first had 2 yrs of tamoxifen.

Another paper for which I don't have the citation said that ER+ PR- tumors respond quite nicely to Arimidex (disease-free survival is longer on Arimidex than on other hormone blockers).  Armimidex may have been the AI used in the paper noted above. All I have is the abstract--our library web server is down tonight.  I think Arimidex is the only AI approved for first-line use in menopausal women with early-stage BC, isn't it?


Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Feb 17, 2008 02:22AM Gitane wrote:


I'm Estrogen Receptor Positive. I wish that meant that I would respond. It doesn't look good.


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Feb 17, 2008 11:50AM gracejon wrote:

I am ER+ and PR-.  I am 3 years out My ER+ was at 19%(can't figure out why they didn't just use 20%.  My second oncologist ,the only one I felt could impart his wisdom to me that I felt was believable, told me that the piece of tumor used to determine hormone receptivity may be more positive or less positive in another area.  His feeling was any positivity should be treated with hormone therapy.  I asked about this because of my low numbers.  If the biggest recurrence rate happens in the first 2.5 years, I have I think escaped that stat.  I have seen the articles about not being as successful but I remain adamant about doing everything I can so I do take an AI and he did convince me that this is worthwhile.  Convincing me is a tough job since I do have a HUGE problem believing what they tell me because of my experiences with reconstruction and breast surgeons.  I am a bit better with oncology since I do not believe they have led me astray as of yet.  It still does not make me any less apt to find studies that may have the opposite view as what they say and bring them to my followup appointments for discussion.  Thank goodness they can understand and put up with my ways.

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Feb 17, 2008 08:53PM Gitane wrote:


I feel as if I have found a kindred spirit. You don't believe it all, and neither do I. It does make me more stressed, I'm sure. I know I'm a pessimist, and that's not good for me. BUT... I need to know the truth, what's real. I don't want to just be cheered up. I don't want to have to fish for information, but I do have to all the time. Like you I continue to find out what I can and ask lots of questions.

What is hard for the doctors and the patients, I think, is that there is so much contradictory, or at least unsubstantiated information out there. Add to that dealing with a cancer that is less common, pleomorphic ILC that's progesterone negative in my case, and you really feel as if you know almost nothing. The tiny bit of research related to it is 10 to 20 years old and is being quoted still in pathology texts, oncology abstracts, etc. For the most part PILC patients are excluded from research studies so the patient population is kept pure for the ILC group.

That said, I didn't mean to go off on a tangent, I'm encouraged that AI's may work at all and I'm taking my Femara in hopes that it will help. I will live with these awful aching joints, the tiredness, etc. if it might help me live. No decision to make there. I hope you will post if you find out anything else. It is helpful to know that even a PgR negative might have a few positive receptors out there.

It sounds like your surgery and reconstruction did not go so well. That had to have been very tough for you. I hope you are doing better now. I am interested that you changed oncologists. The match is very important, I think, as he/she is the lifeline in many ways. Having someone who will really listen, take the time, and give sincere, honest, informed answers makes a huge difference in our coping with this. Even better would be someone who volunteers information. A rare breed as it takes more time for them, I guess.

I am really happy to have read your response. Thanks for writing to me. Congratulations on being 3 years out!


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Feb 17, 2008 09:21PM Gitane wrote:


Thanks for sharing this information. I am encouraged to see that PgR negative did so well using an AI. I honestly didn't expect to see this. These must be Stage 1 node neg. to have these stats. But, even that being true, it's good to know they responded. It was great to read this.


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