Luminal B IDC on Hormonal Therapy - Worried

I don't think it's particularly in luminal B IDC but to add to this discussion about effectiveness of Tamoxifen Ive read that decreasing breast density was an indication of better prognosis.

I just found this http://www.breastcancer.org/research-news/20121217-5 "Of all the women diagnosed with luminal B breast cancer, women treated with tamoxifen had worse outcomes than women treated with Femara no matter if they had ductal or lobular breast cancer."

Some other articles:
http://breast-cancer-research.com/content/13/6/221 - possible ways to target luminal b
http://www.sciencedaily.com/releases/2009/06/090623215852.htm - GF signaling pathway in luminal B
http://medicine.missouri.edu/imed/docs/gr_102810_kardinal.pdf - suggests AI instead

I think it is important to understand that AIs may be more effective for treating Luminal B cancer, but that doesn't mean that Tamoxifen is ineffective.  Only slightly less than AIs.  

There are so many things you can do to reduce the risk of recurrence that have been well researched and validated as effective - exercise, nutrition, weight loss, Vitamin D.  Unfortunately "natural" supplements and foods don't have the research behind them.  Personally, if I was pre-meno, I would stay on Tamoxifen and make sure I got losts of excercise, ate healthy food, stayed at a healthy weight and made sure that my Vit D stayed at 70+.  Reducing stress and living life to it's fullest would also be high on my list.  Doing well with the first four.  Working on the latter two.

Thanks for starting this topic - I hadn't heard anything about this before.  I'm Luminal B (very low ER+, PR-, Oncotype score 42 but no ki67 tested).  I started on Tamoxifen but gave it up because of SEs, then tried Aromasin, gave that up after 2 months because of the pain. After a second try of Tamoxifen I gave up on all meds and am now simply hoping.  I'm going to have to do some more research.

doxie,

Great suggestions, thank you.  My MO seemed to think that I'd tolerate Aromasin better than Arimidex, and hasn't offered either Arimidex or Femara now that I've stopped.  The joint pain was so bad that I was struggling to walk, and sleeping required medication.  OTCs weren't touching it, and I cannot live on Rx pain meds. We talked extensively; my MO acknowledges that these meds only have about a 45% compliance rate because of the SEs, and while she didn't give me permission to quit, supports my decision.  As you point out, I understand the increased risk for recurrence given my Oncotype score; I'm trying to see the 77% chance of non-recurrence, rather than the 23% chance of recurrence.  :-)  Even my MO noted that those who take AIs have recurrence.  I think I've made my peace with whatever the outcome will be.

I think this thread is another reason why people's ages should be included alongside their cancer characteristics.  Hard to tell if a women is post or pre menopausal on this thread, so difficult to determine those who might be in a similar situation to my wife.  The study posted above talks only about post menopausal women.  I always thought tamoxifen was only given to premenopausal women.  I am obviously misinformed.  Some posters have suggested they stopped using tamoxifen.  Was this on the advice of their OMs?  Are these ladies pre or post menopausal?  Be nice to know.

While you cannot use these boards to diagnose, it is still a very useful tool to be educated when you get to see your OM.  Not knowing all posters ages and / or menopausal status makes it difficult to get the complete picture of status, and draw comparisons.  If these boards are to assist people in coping with the disease, then I think posters age or menopausal status is a valuable piece of information that is currently omitted.

As for me, even though my wife is a nurse, I find that I pretty much advocate for her when we see the doctors or OM.  I've educated myself enough to be a pain in the ass for my wife's OM.  If I had a dime for the number of times her OM has said "that's a very good question".  Since my wife is due to begin her tamoxifen regime on Monday, I am now quite concerned about this luminal B and potential for tamoxifen ineffectiveness.  We don't get to see the OM for another 3 months.  I'm thinking I should request a special meeting to discuss this particular subject.

My wife is high ER + 90% low PR + 10, which I understand is deemed negative.  Based on this alone, and without any ki67 testing, her OM has characterized my wife as having luminal B cancer.  I am a little concerned with how she arrived at this conclusion, but I am also concerned about the dearth of information around the subject of tamoxifen effectiveness for luminal B or even PR negative cancers.

Would appreciate anyone's feedback in this matter.

Are their premenopausal ladies on this forum who's OMs have taken the off tamoxifen because their OMs believe it to be inneffective?

If I find out more from our OM, online, or whatever, then I will post my findings.

Tony