ER+ question

[Emelie]

Hi ladies,
I hope everyone had a wonderful Mothers Day! I was told by my onc. that I am ER+ 5% and she didn't think it made much difference if I did hormone tx or not? I was wondering what you all think about that, and if any of you have had to make the decision based on a low percentage too?
Appreciate any input as I really am not sure what to think.
Thank you for any suggestions,
Emelie

[Kim in CA]

Hi Emelie,

I am less than 10% estrogen + and have been on Femara since 2001. I was actually diagnosed as ER- innitially (because the percentage was so small), but when I had my recurrence in 2001, a specialist at UCSF said I should add Femara just to improve my odds.

Hope that helps! Kim in CA

[Barbara2]

My original path port showed my ER was "+1" on a scale of 1 to 3, with +3 being the most positive. At that time we didn't know a "percent" for my ER, but he wanted me to take an AI anyway, because he said even if you are weakly positive, it may make a difference, so he advised taking it.

[Emelie]

Thank you ladies for responding. I think I will give it a go. I was just not sure if other women have used the treatment with such a small percentage. I like the idea of "improving my odds" any way I can.

Thanks again, and have a great day!

[shelli]

I am also only ER-6 considered borderline and Docs aren't real sure what to do with us. The concensus of most I asked was to use A.I's because any benefit we could achieve is better than none at all. Some great people on this site suggested to me to have the original pathology retested at another lab to confirm results and then base decision on results. I am now in the process of doing just that. If it doesn't improve or drops I think I may just stop the Femara due to bad side effects. I was on Arimidex and the pain in
joints, stiffness, falling, lack of coordination/balance was awful. I'm also so
weak and fatigued. I feel almost worse than when I went through all the treatment prior. Had even developed cardiomyopathy from Herceptin X52 wks. Both of these drugs are causing the same problems equally so it is really affecting the quality of life for me. I feel like an old lady trying to even walk and am only 53. Also have osteoporosis. For me it seems like it has gotten progressively worse so I might even stop it for a month and see if everything improves. Also, Onco gave me Elevil for neuopathy so I will also try this first. My onco thinks it may be from the Taxol, but I disagree since I stopped it over a year ago. I also think it may be due to stopping my Herceptin of which I had steroids given (Decadron) with each infusion and it may have masked all this. When I finished Herceptin that is when
it all really worsened. I hope this is helpful. Good luck & keep me posted on what you decide to do!