100 percent ER/PR positive

heathermcd

I met with my oncologist today and asked to check what percent hormone receptor positive I am. He told me that I am 100 percent ER/PR and HER+++ . I didn't even know I was PR+ at all. Anyway, I'm wondering if there are any risks/benefits to being SO highly hormone positive and what, if any, treatments are usually done to deal with the PR status? Does Tamoxifen work for PR as well? Thanks in advance ladies!!

Letlet

Hi Heather, I am ER-/PR positive and my onc wants me to take Tamoxifen anyway when I am done with Herceptin because I am PR positive. Hope this helps.

bdavis

Hi ... I am 98% ER+ PR+ HER2 neg... and was told that ER/PR + is good... I will not only take Tamoxifen but will also prob have my ovaries removed... And once I am post-menaposal, it should improve even more.

Your 100% means your cancer needed estrogen and progesterone to grow... so eliminating them as best as possible is a great defense... and the drugs they have are highly effective (from what I'm told)

XmasDx

Heather I'm 100% estrogen/100% progesterone positive as well.

Since I had been taking 50-100mg of compounded progesterone prior to my dx, I asked my surgeon about whether that could have caused the area to grow, or what affect it had.

What she told me was the progesterone's role has not been studied nearly as much as estrogen's role in tumor growth.  

So I'm not sure there is an answer about PR+ status, but I know for sure that we obviously cannot have prog cream or any other form of added prog or estrogen for the rest of our lives!

heathermcd

Bdavis - just curious, do you mind disclosing how old you are? My oncologist has recommended that I have my ovaries removed but I am having a hard time with it. I am only 27 and I'm trying to weigh the risks and benefits of an ooph right now. I know I'll be taking Tamox for atleast 5 years - my onc thinks it will be more like 10 for me.



Good to know that the Tamox works well with the PR status as well. Its unfortunate that PR + has not been studied more, but hopefully I'm able to keep it out of my system as much as possible.

Beeb75

Hi there,

My core biopsy showed 100%ER+, 100%PR+, Her-. Interestingly, after surgery, the pathology was 90%ER+, 99%PR+, HER-. Either way, both surgeons I spoke with said that was very good. These cancers have a better prognosis overall and they respond very well to hormone therapy (tamoxifen, etc.) I am doing chemo too, but my onc says my greatest benefit will come from hormonal treatment.

I keep pushing my oncologist about the PR receptors too but haven't gotten a satisfactory answer. It doesn't seem like anyone takes any medicine that particularly targets those receptors. I have read that PR receptors usually mean the ER receptors are functioning and that's why hormonal therapy works better and prognosis is better. (But no guarantees, of course! As my onc likes to say.)

In terms of an ooph -- it hasn't come up too much with my oncologist. There is also a way to "medically" shut down your ovaries using a drug called Lupron. I think it's a shot you get every 3 months. The good thing about it is, it's reversible. If you stay healthy and eventually want to have a baby with your own eggs in 5 or 10 years, the apparatus will be there.

I think that (Lupron) is what I will do if my doc suggests ovarian shutdown -- at least until I've solved the kid dilemma. I'm 35, engaged, and my fiance and I froze eggs and embryos immediately after diagnosis. You might also want to consider egg freezing, if it's still possible (chemo could interfere and tamox definitely would) but certainly before going through with an ooph!

Best of luck with your decisions! 

bdavis

Hi Heather... You are in a tough situation... I am 48 and was nearly menapause anyway... So, I will do chemo and start hormone therapy and THEN have my ovaries removed so I don't just get slammed with menapause.  I think if I were 27 and had our percentages, I might delay the ovaries removal for a couple of years... but keep in mind that Tamox will creep you toward menapause regardless... the down side is, if you also take out your ovaries at your age, you could later have osteoporosis issues (more than me), and of course it all will interfere with child bearing. I agree with Beeb that maybe you should consider freezing some eggs. I assume you have done chemo, so I'd ask your onc first.

Beeb75

For freezing eggs, look into Fertile Hope, which can guide you to resources and possibly get you discounts. I used them. Or, PM me and I can get you info from my good friend who is a fertility doctor.

heathermcd

Thanks for the advice. My husband and I actually met with a fertility specialist prior to starting chemo (which is when they suggested we do the harvest). We decided not to do the freezing mainly because neither of us were 100% sure we wanted kids and felt that freezing them would make us feel like we "had" to have kids. Either way, i'm not as much worried about having children as I am the side effects from having my ovaries removed (such as bone loss, heart problems, decreased life expectancy). It seems to be a fine line between quality of life and reduced risk of mets. Now that I know i'm 100% ER+ I feel like it might be a smart move to have them taken....

Leah_S

Heather, the problems of early menopause at your age are not minimal. You might want to go with the Lupron to minimize your isk now. It's not only about fertility, it's your overall general health that can be affected. You might want to speak to docs in other specialties about pros and cons before making a final decision (cardiologist, orthopedist, etc.).

Best of luck.

Leah

joyce1419

How do you know what % estrogen or progesterone + you are.

I did not see that on either path report.  Was it on your path or info from doctor?

thanks.

bdavis

It should be on your pathology report.

CrazyKitties

I am almost the same ER PR as you. I did very badly on tamoxifen, so I got my first Lupron shot a month ago, and it was better than tamox!!!No weight gain, no "let's jump off the bridge, oh wait, let's not!"I really am shocked at how well I am doing on it!!! I am a complete smartass again and everything!!! I hope you consider it.

CrazyKitties

I just realized----you are 27? By NO MEANS should you have your ovaries removed, NO WAY!!! If you take tamox and have no serious side effects, then TAKE IT. DO NOT remove your ovaries---in 5 years, some new treatment will come out even if you have a re-occurence.

CrazyKitties

Ok, I have ADHD, so please forgive me! You must have gone thru chemo for HER2+ status, and I see that you had extensive radiation. The chemo and radiation are what killed off any stray HER2 breast cancer cells. Those are the ones that are most worriesome for you. It is my opinion that taking lupron shots to put you into menopause perhaps temporarily is better than having your ovaries removed. Your hormones aren't really the issue right now, it's the HER2. In fact, hormones aren't our enemy; we need them. I did not have chemo so the chance that 1 stray cell is floating around in my body is a little different than yours. My stupid bc likes to grow on estrogen, like yours. However, the hell you went thru with chemo and radiation actually puts you in a safer place right now than you realize. Chemo for HER2 SUCKS!!!And the radiation you have gone thru has done it's job, I'm sure! What I am trying to say is, SLOW DOWN. You are fine right now. Lupron often works only temporarily in young women, which is good. RELAX. Don't rush to have your ovaries removed, when you can get a shot that's not permanent!

 My love to you! You are so young and brave, and I wish you the best!

heathermcd

Crazykitties- Thank you for your thoughts and information. Its good to get as much information as possible regarding this HUGE decision. I'm pretty sure that i'm going to wait to get the ooph until i'm much older. I'm just not ready for it yet. I'm planning on doing the Lupron until they won't let me anymore...at least that will reduce my estrogen for a period of time. I'm really wanting to do everything I can, but there is only so much that can be done before I just have to stop and let life take its course. Thank you again for your advice! Best of luck to you!

jacee

Ladies...regarding PR status and not being able to find info on why we don't take something to block progesterone. I asked my endocrinologist that question...he said "If you block estrogen, you are blocking progesterone". That progesterone is a by product of estrogen being made. It's the only explanation I've ever heard. I'm 97% and 90%.

Mountains1day

Hi Ladies, I often wonder if I am doing the right thing by not having my ovaries out (onc and gyno both recommend) but I have been standing my ground.  I have researched information that supports keeping them for all your life and the fact they have functions such as helping our bones stay strong, heart health and longevity, not to mention I'm afraid of another surgery.  However, I was also strongly ER/PR positive, 50 years young at the time of diagnosis and not near menopause.  So, I chose to shut down ovarian function w/Zolodex and go on a AI.  What would be the benefit of removing ovaries at this point?  Would one need to worry about the ovaries later when Zolodex and AI therapy stops?  Thanks for any thoughts from the wise and wonderful ladies on this board.

Thatgirl

Are your ovaries really shut down or just producing very little estrogen?

ErinS

I agree with the poster who said to avoid having your ovaries removed. I'm confused as I have never heard this as an option for a 27-year-old, even with dismal core biopsy results. Keep taking the Tamox for now, and get a second opinion! Best of luck.

duckyb1

Hey ladies, I brought this up to my kids the other night........I do not want to go on Femara becaue of the SE, so I said "I have a tumor being fed by Estrogen er+,.  I am friggin 76, so tell me I'm still producing Estrogen?............Now if I am, would having my ovaries removed stop all Estrogen, thereby eliminating the need for a hormone (femara) since there is not longer a source of Estrogen producing ovaries.............their gone?.............

Of course they looked at me like I was nuts, but I'll do anything to avoid taking that friggin pill.  I would consider the Rads (even though that could be nasty too), but I do not want that pill...Has anyone ever heard of an "old goat" like me taking drastic measures like that to avoid the damn hormone...................thanks

sesohio

duckyb1, estrogen is also produced by adrenal glands and fat, helped by aromatase, which is an enzyme. So, per my surgeon, Femara reduces estrogen-fed cancer cells by blocking the enzyme that helps the adrenal glands make estrogen. BTW, I have been on it for a couple of months (I'm 57) with no side effects whatsoever.

37antiques

Hi ladies,

I was 37, and had a total hysterectomy.  I am not taking anything at all, because I no longer produce hormones.  I went into menopause, but the hot flashes were controlled by effexor.  I don't have to worry about side effects or a possible cervical or ovarian cancer that way.. Easy Peasy!

Renee51

I also had a total hysterectomy about 5 years ago because I had endometriosis. My GYN put me on estradiol. I told her I was afraid of breast cancer. she assured me this was very low risk. I took myself off of it at about age 50, one year ago. Now I have DCIS, scheduled for surgery next friday... Apparently my hormone receptors were 100%. Trying to get my head around all this. I meet with oncologist at the end of this week. I hope I have some better idea of what I can expect regarding medications, etc. I have a medical background, but this is definitely out of my scope of practice. So thankful, we have the experts to go to. 

HomeMom

From what I understand, the % of ER and PR is just from the sample they took, not necessarily the entire tumor's make up

wintersocks

homemom

Wow, is that right that the rest of the tumour might be triple neg or pr positive? - mine was 8/8 er+ too. Isn't that a bit worrying? I mean for the drugs they give us?  We might be on the wrong ones??   

HomeMom

No wintersocks - it doesn't mean that you have a chance to be negative in other areas of the tumor, it just can vary a little bit from sample to sample is my understanding.

Anonymous

I didn't see the % of ER/PR + on my path report either.  I just recently got my report from genomic oncotype score -- but that was only on the biopsy prior to bilat mastectomy. Has anyone heard that the one-size-fits-all chemo cocktail Adriamycin & Cytoxin doesn't benefit women with ER/PR + cancers, as well as neg ER/PR women?  I've found more often it is a question of what your oncologist thinks....

  

Cammychris

I have a question I am going for surgery on the 15th for double MX I am still waiting on HER2 results had to be sent out for additional testing but so far I know that my ER+ (85% strong) and PR- is this anything to be worried about?  I am trying to educate myself and have as few unknowns as possible. 

HomeMom

I had my last period last June but my MO said that Chemo will force me through menopause. I don't believe I will be taking Taxoflen (sp) but the other alternative.

Devine16

Hi I am 8/8 for both hormones also and 0% staining for her2. I am currently going through chemotherapy at min and am having a really hard deal. My grade was 2 on core biopsy but was 3 after surgery however someone told me this can be simply a difference of opinion. Can a strongly hormone positive cancer be grade 3. Anyone help at all.