Almost Triple Negative

There are some weakly positive ER ladies (1% and up) here... hopefully one will be along shortly. 10% is fairly strong weakly positive, if you know what I mean. 

I am 3% positive and was told anything under 5% is considered negative. I would want to take something if I were at 10%.

Hi Annie,

I am not estrogen + but wanted to post because I share your diagnosis of finding a 9 CM tumor last October. What a wild ride we have both been on since then, huh?

Did you also have dense breast tissue that your tumor was hiding in?

People treat me like I knew but was avoiding it, or in denial, or somehow wanted it to grow that large. But due to my dense lumpy breast tissue It was simply hiding from breast exams, mammograms, etc.

I just wanted to reach out to another who found herself in the same boat.

I hope you are doing well.

10% ER+ cells, if that's what you're asking, Annie.

My MO wants me to be on Tamoxifen for five years once I am finished with chemo (1year).  I am <1% in a multi focal DCIS which she believes to be a cancer seperate from my IDC, even though I had a mastectomy and wil have 33 rads.  I think it's kind of strange but she believes it for the best.  I'll take if I can tolerate it.  It's a little outside of the box.

Annie - yes indeed I have side effects. However, I would rather them than the possible alternative, as i had a very agressive cancer 9 out of 9 on the "hoologanism scale" - don't know the right name - and very large tumour, and, 5 yrs later, am still being examined every 6 months or so by my breast surgeon for recurrence.

If you are PR- and Her2-, and you have 10% ER+. it seems that's a good thing as - and I might be wrong here - being triple negative gives you very few choices for treatment - I don't follow their threads but that's what little I've gleaned.

I have a friend who had a lumpectomey 15 years ago. Plus rads. But she could not tolerate tamoxifen - it made her very depressed so she stopped. she must have been ER+ to receive tamox. she developed bone mets 2 yrs ago. all I needed to know to stay on arimidex.

some people have no ses - especially the ones who are most active, it seems - they exercise the stiffness out. it was explained to me that chemo, rads and hormone therapy were all insurance, after my MX - and they are, because br is sneaky and who knows where some potential is lurking? I was/am happy to have it all. Nobody debated or questioned it, not me, my oncs, my br surgeon. 10% ER automatically = arimidex. For every poster who has ses, I wonder how many do not, or have minor ses, or - and this happens a lot - the ses do tend to come & go. That said, I did feel like I went from 60 to 80 in terms of stiffness in about 3-4 months.

but that has eased - much worse several yrs ago. Same with carpal tunnel - but i wore wrist braces for about a year, it went away. My hair is about 1/2 as thick as it used to be - just does not grow thick, but still grows very fast. I have a short, very choppy hair cut & use men's grooming clay to make it funky. I'd rather have peace of mind than a recurrence then kick myself round the block for not having done everything I could have.

There are threads with many suggestions for dealing with ses of aromatase inhibitors - many I've never even tried...

Wishing you the best

Annie, I finished rads on Feb. 22 and started tamoxifen on April 1. My MO wanted to give me plenty of time to recover from chemo and rads. He said if my ER percentage were higher he would have had me start the tamox sooner. I'm at 26% ER+.

Hey everyone! I am new here. I was relieved to find this message board. I just found out my cancer was less than 1% ER +. I am not sure my percentage of PR +. I asked my rad doctor today if this meant I almost have triple negative and she said yes. Now I am freaking out! I have started tamoxifen as my onc did not want me to wait until after radiation was over! I feel like there is something I am not being told. And the thought of almost having triple negative really scares me! Is anyone else in this boat???