How Significant is % Estrogen Receptor Positive

It's my understanding that the higher the percentage, the more the tumor receptors will respond to hormonal therapy. I was happy to hear that mine was strong ER+/PR+ because it meant that if I denied them "food" they wouldn't grow as easily.

I have been on Femara since June 2009, and haven't gained a pound from it. My joints have been slightly achy but that went away when I added fish oil supplements to my diet.

Good luck with your choice!

Laura,

It's great you are doing your research.  I just completed 8 rounds of chemo & I on Zometa & Femara now.  I hear from many metastatic ladies out there that Zometa is a great drug and on my 6 month scans after zometa; all my spine & other bone mets showed healed.  I just started Femara and I'm on Lupron to push me into menopause to eliminate more estrogen and because I did not want to take tamoxafin.  I feel more protected on this because I found so many women on the boards who either did not choose armotase inhibitors or who were not eligible for Zometa or other drugs that protect you against cancer and they are now stage IV with mets.  If you have the choice; protect your body.

Terri

Laura, I feel so much like you about the hormonals.  My tumor was ER 90% and HR 90% positive.  I just started taking Arimidex last Friday.  I'm so afraid that my quality of life is going to go down the hopper.  I did however, get thru Chemo and Radiation very well which surprized me.

I would sure love to hear from someone who did ok on Arimidex.

Good luck Laura. 

I had two tumors, one in each breast and one was 90% er+ neg for pr and her2 and the other was split between er+ and pr+ (can not remember the exact %'s) and her2 neg.  One tumor in each breast..how convenient..lol. Even though they say that chemo does not work as well on hormone + tumors as hormonals my big er+ ball disappeared completely after neo chemo.  I gained weight during chemo, from the steroids I'm sure, especially since they were the only thing that worked on my nausea.  Anyway I was set to take Tamox and then my test came back poor metabolizer. I opted for the ooph and Femara.  Between working a lot and recovering from all the crap I went through physically last year I have yet to start working out regularly and not only lost all of the chemo weight but have not gained one pound from the ooph or Femara. My hair is growing in as thick and curly as it was before and I do have some not exactly achyness but stiffness if I sit in one position too long.  Once I move around a little I am fine.  I am 37 and expected the worst but it has not panned out.  I don't know if I am typical but I don't think happy people usually post (and by that I mean happy with the tx). I am doing the Zometa as well because of bone loss from the treatments and how I felt the day after that infusion was way worse than any of the Femara side effects.  So far so good.  These are big decisions to make especially the surgical meno because I wanted a baby but my DH and I have started the adoption process so that will take care of it self too I guess.  Hope my story helps you all realize that there are those of us out there that are not "turning 90" from all this stuff.  I am still me and feel really good. I feel confident that I have done all I can and now it is out of my control . Best to you all. 

 Laura,

Diagnosed June 2006. My BC was 100% ER+ and 100%PR+. Subsequent tamoxifen lead to endometrial cancer for me. No test for metabolization or endometrial US scan were done one me - docs goofed and I turned out to be one of those unlucky few. So I ended up with an ooph and hyst a year later. I requested my gyn tack the bladder up to help prevent prolapse. I've had no issues with incontinence (sounds like you're worried about that since you're talking about the sling). I've done kegel exercises my whole adult life, which helps prevent bladder issues; my doc recommended that I start doing these when I was in my 20's. Anyway, I got tagged with a 2nd Dx of BC this last year. Went the BMx route (one prophylactic) and reconstruction to minimize risk of local recurrance. Went on a low fat diet that my onc said would give me as much protection as any antihormonal at this point of the game.

My ooph was 2 years ago; no bladder issues and I paddle for a dragon boat team - lots of core work and bending forward. I feel great. I requested that my bladder be tacked to keep it from prolapsing, but I didn't even know about the sling procedure. Are you concerned about incontinence? It's not always a given with this surgery.

Zometa? Isn't that for bone mets?

I've had friends on Arimidex for over 10 years; they have had little to no issue. Another friend had joint pain. Everyone is different. and you can't know until you go down the road. But if you choose to consider tamox, please take the metabolization test and also have a vaginal US.

Navygirl, a 30% ER+ means 70% ER- . Likewise  95%PR+ means 5% PR-; the ER and PR do not add up to 100% together; they are each treated as separate entities. Hope this helps.

Take care, Laura. Ask your doc about the oncotype test. If it is low score like mine was your 4th option could be ooph plus low fat diet/low body fat goal. See what your onc thinks about this path. But everyone here is correct - you don't want to do nothing, that's for sure! Be as aggressive as you can without compromising your quality of life so much that it's not worth it. You've just gotten done with chemo. It takes a toll but your energy will come back. My mom took 2 years to get back to normal [EXTREME HIGH ENERGY] after her BMx and many rounds of chemo and then she was a fiend again. That was 21 years ago and she will be 85 this year!!! She is my role model!

Charlestongirl, Zometa has shown in studies to PREVENT (woohoo) as well as treat bone mets and a lot of oncs have started to use it as a preventative.  Mine onc was resistant at first because I was not a higher stage but when my bone density started to suffer he was on board.  It is given ususally 2x a year as a bone met preventative and a lot of the ladies on these boards are getting it for this now.  I am technically getting it to increase bone density but the preventative aspect is a great plus.  Kind of a wonder drug in the BC world.

I had really researched, and looking at my background, personal history etc. it just didn't make sense to me, it didn't FEEL right, that I would be triple negative. So I asked to have it rerun. At first my oncologist, who was new at my clinic, thought I was nuts or grasping at straws (which I was), but he was so SHOCKED when the results came in that he took my case to the medical review board and they changed their policy. Now all tumors are reviewed by two pathologists. If they still come out triple negative, they are sent them to Mayo for confirmation. So I would suggest that ladies should ask what their clinic's protocol is!!!!!!! It changed my whole treatment plan, prognosis, everything. I still shudder when I think about it. Pure luck, divine intervention, or a combination of the two?

I'd have to dig through my papers to get to the (amended) path reports; but, from memory, whatever test they did at Mayo had anything over 10% as being estrogen positive, and I was at 25%. I didn't got those results until after two sessions of chemo; but being positive and being able to take Als meant that instead of having to do 8 rounds of chemo, I 'only' had to do 4. Also the Al's reduced my risk of reoccurance by 40%, whereas the chemo was 20%. So being estrogen positive is a BIG DEAL!!! I didn't have an oncotype because, when I started chemo, we thought I was negative. I'm sure they would have advised it anyway due to the size and grade of the tumor.  I ALWAYS tell everyone in any medical situation to find out as much as they can and be their own advocate!!!!

I would make sure you get Zometa-as the Head of Sloan Kettering said in a recent interview- it's the biggest discovery in breastcancer research. It cuts chance of bone mets by 37% and works well in ER pos women.

The more er pos you are the better you should respond to hormonals-with that said you need to get the tamoxfin metabolizer test and see how well you will metabolize tamoxfin. If your not an extensive metabolizer then doing the oomph and femara would probably be your best bet.

Laura, your thinking is not stupid at all.  I'd be thinking the same way.  Tamoxifen continues to be the protocol for premenopausal women, unless they have more advanced cancers, then their doctors seem to want to put them into early menopause so they can take AIs like femara.  Chances are that tamoxifen can push you into menopause while you're on it and it's much better to go into menopause slowly, and still keep whatever benefit ovaries can continue to give your bones, cardio system, brain, and of course skin and sex life!  These are all very important considerations for quality of life and feeling good about oneself.  I think oncologists don't really consider all this as much as other doctors would, their focus is more on reducing cancer risk.

As you can see, I'm very anti ooph!

I had an oopherectomy at the same time as my initial mastectomy. I am very grateful that I did because although it obviously tipped me into menopause I feel I struck a blow against my 100% ER+ cancer at an early stage - rather then waiting 8 months to finish chemo and rads before I could start taking the pills.

I am also very pleased to be post meopausal so that I can take Arimidex which is outstripping Tamoxifen in efficacy. I take bisphosphonates to prevent against osteoporosis  - which is now proving to be a very useful thing because studies are showing that bisphosphonates can help prevent recurrence. So - I did the ooph + Arimidex combination and have absolutely no regrets. I feel it was the most aggressive way I could proceed to tackle this cancer - and I never do anything in half measures! Good luck.

Devine - I was 100% ER+ and less than 10% PR+ grade 3.  This puts me in the Luminal B group.  Is it still not clear how this group will respond to hormonal therapy, however they respond very well to chemo.  Most of my cancer was gone after neoadjuvant chemo.

devine yes they can two separate things

thanks for that but I still don't understand how my tumour is highest hormone receptor positive and high grade 3. Do they correspond???

luminal b tumors typically are very high ER but low PR. They are always grade 3

Devine that's great on ur path results.  Chemo is hard but I had no other options and have been NED now for almost 2 years.