ER+/PR- HER2- anybody else?

maymom05

I was diagnosed with IDC ER+PR-Her2- on 10/10/08.  My tumor was 1.1cm and no nodal involvement.  Anybody else with same hormone receptor status?  I am wondering what types of treatment others had.  I've read that my type (ER+/PR-) has a worse prognosis than ER+/PR+ and that my type is more at risk for bony mets.  I'd love to hear from others with ER+/PR- Her2- breast cancer!  

otter

maymom, I'm on that list.

When my first onco gave me the results of receptor testing on my tumor, I asked about the significance of the ER+ PR-.  I had read that being ER+ but PR- meant there was a higher risk of recurrence, and the tumor was likely to be more "aggressive".  But, my onco #1 said the specifics of the ER/PR stuff didn't matter, as long as one or the other was positive.  IMHO, he was wrong.  In fact, when he called me a month later with my Oncotype DX results, he said one reason why he was recommending chemo was because my tumor was PR-.

If you look into the details of the formula used by Genomic Health when they calculate Oncotype DX recurrence scores, ER and PR are both "negative" factors.  That is, having ER and/or PR in the tumor results in a lower Oncotype recurrence score.  Absence of either ER or PR (or both) produces a higher Oncotype score.

The good news is that the same characteristics that make ER+ PR- tumors more "aggressive" probably make them more responsive to chemotherapy.  Also, several studies have shown that aromatase inhibitors work at least as well against ER+ PR- tumors as they do against ER+ PR+ tumors.

I had 4 rounds of Taxotere & Cytoxan last spring, and I've been on Arimidex since then.  BTW, I started a thread about this same issue last year, over on the "Hormonal therapy" forum.  I'll see if I can find it.

otter 

Sukiann

Yes, that's me too although my grade is a 2. I asked my oncologist about this and he said that there wasn't a huge difference.  We would get the same treatment (tamoxifan or another drug) to stop the feeding of the cancer.  It is also more favorable to be her2 negative so focus on that.  I didn't hear that we are more at risk for bony mets.  I'll check it out and ask my oncologist.  Anyone else know?

33skidoo

I don't know if we are  more at risk for bony mets, but I sure got them.  The good news is that if one does get mets, it's far better to get them in bones than elsewhere.  Lots of women with bone only mets live pretty normal lives.  Don't be freaked out by my smallish tumor size, lots of women with large tumors don't get mets; unfortunately, some women with small tumors do.  Also, my tumor was grade 3.

ginagina

Hi ya - this is me too. I was given a choice of TC every 3 weeks for 12 weeks or CMF weekly for 26 weeks...the outcome/survivability %wise was virtually the same. I've no idea what bony mets are, but I guess I need to find out!

Sukiann

gpd, where you give chemo because of a high oncotype number?  I have about the same dx and they are telling me maybe no chemo?  BTW, bony mets is when the cancer has spread to the bones.

Maryiz

33skidoo, how do you manage your bone mets?  Are you in pain often and what do you take?  I am reluctant to take Zometa for bone mets because of the ONJ.  I just know I couldn't bear that on top of everything else.  Thanks for any help.  Maryiz

33skidoo

I had let my spinal met go too long and got an unstable back fracture that I had surgery for.  The back fx DID hurt, mostly because it was seriously impinging on my spinal cord.  The surgery fixed it right up.  Then I had the spinal mets radiated.  I take hydrocodone and/or flexeril (muscle relaxant) for my back when it hurts, which is usually at the end of the day and at night.  I only get an occasional twinge with the pelvic met, for which I usually take motrin or a hydrocodone.  My bones mets are treated systematically only and are stable. I do take zometa and believe it helps.  I was advised to get any dental work done BEFORE going on the zometa, and to scrupulously maintain my teeth.  I go to the dentist every 4 months or so (it's convenient since his office is in the office complex where I work).  I've heard that the risk of ONJ is low unless invasive dental work like extractions or implants is done.  I've had no problem with the zometa.

Maryiz

33skidoo, thank you for the lengthy explanation.  I didn't have much pain relief with the hydrocodone, but will ask about flexeril.  I will do some more research on the Zometa, maybe I can take a smaller dose.  Thank you.  Maryiz

33skidoo

Maryiz, I think the reason the flexeril works for me is that my back gets all kinked up.  It does nothing for the pelvic met.  If hydrocodone doesn't work, try something else.  Good luck with that!  I take zometa every other month and may reduce the frequency further.  There is apparently an ongoing study regarding the frequency of zometa.  I've heard that a number of other people take it less often than monthly.

np312

my mom's tumor was not tested for PR receptor status - she is ER+ and Her2 - . Doctor said PR status didn't matter. Should i push them to do PR test or it's not worth it anymore - she will finish her chemo on April 17th - she got 4 AC and 12 weekly Taxol. She will also get radiation adn then will start Arimidex.

auriga

Count me in as another PR negative. My doctor also said PR status is not important, however I wonder. He was expecting my oncotype score to be low, it came back as a 26. I have to wonder how much of that score was driven by the PR status.

ginagina

Sukiann: I dont know my oncotype score.  However, I've got a family history of both breast/ovarian cancer (but negative BRCA1/2) so I decided not take any chances. I am totally curious about the score now given how much it comes up on this site, so it will on the agenda the next time I see him.

mumito

I also share the same dx had chemo before the rad/mod/mast.One large tumour was already in my lympnodes under the armpit. But I had a excellent response to the chemo I was lucky.So far no sign of mets anywhere. I also did rads and am on daily tamoxefin.I am planning to remove the second breast this summer for less worry and a more balanced look.

Sukiann

gpd your oncologist probably will tell you that you don't need the oncotype test. This test is used for people that are in the grey area  - they are stage 1 with no lymph node involvement, hormonal receptive and her2 negative.  Just what we all are here on this thread.  Since you have the family history you and your oncologist decided to do the chemo.  The oncotype test is used to make a decision to do chemo or not.  The score determines the recurrence rate and from that the specialists will decide chemo or not.  You have already made that decision so this test doesn't matter for you because you decided that your risk based on family history was too much.  Hope I explained this right!

ginagina

Sukiann: Exactly. I totally get it and my onco basically said the same thing. Ahhh, but there is an analyst deep inside me that keeps popping up every once in a while and is just curious about these things. What's the score? Is it high or low? Obviously, it wouldn't dictate what type of chemo treatment to do, but the pedistrian in me wants to know!

Sukiann

ginagina, yes I can understand your curiosity!  If the test is expensive they probably won't order it.  Might not even though it may be relatively inexpensive (might be a control issue!).  Now I'M wondering what your score is!!! 

DV8Q

I am in the club too! I just finished 4x of AC and will start my Taxol on friday 4x. My oncotype was 16 but for my age and tumor aggression my cancer team decided that score was not an indicator to change treatment. I read an article that related to our status and it also says that er+/pr- are more agressive it is at http://jnci.oxfordjournals.org/cgi/content/abstract/97/17/1254 I really wish i knew  how to post a link ...cut and past doesnt work in my browser

Sukiann

I just got my path report from my surgeon.  Surgery was friday 3/13 and all went well.  I am still er+/pr- grade 2 and HER2- but my tumor is 2.5 cm (a little bigger than they thought) and I am node negative.  My surgeon called me again to explain that the first stain on my sample showed negative for cancer in the sentinel node but the second stain showed micrometastis.  She said that this would not change my status as node negative (9 other nodes were negative) but it is bugging me!!!!  I am going to the oncologist next week and I am curious to see what he has to say.  I'm sure he will send out for the oncotype dx test.  Anyone ever have this micromestatis?  Sorry if I'm not spelling it right.  DVQ8, I'm going to check out that link you posted.  Did your oncologist recommend chemo because of the er+/pr- status or was it your age? 

Alwayssearching

Me too. I also am BRCA1+. I had a bilateral mastectomy and TAC chemo x 6 doses. Just finised 3 weeks ago. Now on to Arimidex (maybe). I had my ovaries removed about 5 years ago after BRCA dx. and am not certain I want the side effects of AI's.



My cancer was grade 3 with a very high mitotic rate which was the primary reason for my Dr recommending chemo.



I have read a lot about ER+PR-. Enough to know that the medical professionals do not know how the absence of PR receptors effects the cancer.



Sharon

DV8Q

Sukianne , it was because of my age that I was recommended chemo, and now I am on my last! And i have to think about long term plans to suppress the estrogen  

debbie6122

Hi DV8Q, iam glad you are on your last chemo, yipee!! My onc said that the er+ feeds the cancer and the pr- well they are not quite sure about that yet, just like triple neg they are just learning more about that, it"s weird, but they say its better to be er+ but it also feeds the cancer so it is all confusing, onc said even tho i had large node involvement i would of had chemo, i dont start till around the 18th of may, still waiting to heal form surgery before they release me, Hope you are doing good, btw i lived in grants pass, ore for years i miss it so much, its so beatiful there

angel hugs

debbie

peppopat

 I  called Oncotype this  morning and told them  that the 4-page report I received  yesterday was total crap,  It left  me with more  questions than  answers.   

 #1,  they  treat a micromet  node  the same as no  node involvement which  means Stage 1,  not  2

#2  The  report tells  me that I  am  PR- negative. A  little under the  threshold  for positive.   All  my  other 3 pathology  reports  had  me down as positive. 

another newsflash 9/21/2011:

It's come  to  my  attention that  Oncotype  hands  out poor scores  to  women with  PR-  status,    Funny  thing  is,   3 labs  say  I'm  positive  for PR, not  much --- 25%  is  enough,  is  it  not?  Only  Oncotype  has  me  down  as negative.  Who  am I supposed  to believe???

#3  Size  and grade of tumor  are NOT  at all  figured in to  their calcs.  

 They  would not break down the results  of  the 21-gene testing. When  I asked  them  if they could at least  give  me my  Ki-67  score  they  told me I  cannot have access to  that  and neither  can  the doctor.  MY previous  Ki-67  was a zero  on my DCIS  portion of  the tumor.

  The  calcs  have  already  been done  for a score  of  28 that  breaks  downs to  a  19%  chance  of  recurrence.   You  will  see that  radiation does not  factor into  the chance  of recurrence,  only  Tamoxifen and Chemo.

Update  9/19/2011:

  Tubular  cancer in the  Onco  Medium  range does happen, maybe about 20%  and  Genomic  Health  also told me  that  they  have even seen  one in  the  high  range  but  they didn't  sure bother  to tell me  the  higher scores  of b/c are due to PR-  as  I  now understand it. 

ingoodcompany

I also am ER+ PR- HER- my ER is 100%  I have not has an onco test done yet, but I aslked my MO to order one.

jgbartlett

I am also er+ pr- , and have had similar comments from my onc - treat the er+, not enough research on the pr-.  This really worries me.  I've just finished my chemo, and start rads in two weeks then tamoxifen. I'm not looking forward to the next five years of anxiety !!

mammalou

I am getting sick of this with the MOs!  Why do they test for PR status if it means nothing?  I've read articles that say it is more aggressive and possibly Tamoxifen resistant.  Are there not studies to back this?  Is that why the doctor's want to ignore it?  I am confused. I feel like I am living with a sense of dread.

otter

On another thread about this same subject (ER+/PR- tumors), katsOK posted this link to an abstract in PubMed:

http://www.ncbi.nlm.nih.gov/pubmed/21339261

It's a review paper that was published just this year in the scientific/medical journal, "The Oncologist."  The title of the article is pretty intimidating, IMHO:  "A review of an unfavorable subset of breast cancer: estrogen receptor positive progesterone receptor negative."

And, here's a commentary on "Single Hormone Receptor Positive Breast Cancer" on the website "Looking for a Cure."  The commentary was written by the authors of the review paper cited above, so it also takes a pessimistic approach (IMHO):  http://lookingforcure.org/index.php?option=com_content&view=article&id=93:single-hormone-receptor&catid=50:types-breast-cancer&Itemid=53

I think some of our doctors are uncomfortable with uncertainty, especially when dealing with patients.  They don't want to reveal to us that 1) they don't know the answers, or, in some cases, 2) nobody knows the answers.  Sometimes the problem is that a doctor thinks he/she does know the answer (e.g., "it doesn't make any difference which of the the two hormone receptors is positive -- just as long as one of them is positive"). 

The authors of the review article katsOK cited went so far as to say that the recurrence risks (risk of mets) associated with ER+ PR- tumors are as great as those associated with triple-negative BC.  That makes it sound like testing for PR would be worthwhile.

otter

kira1234

Oh Otter that is so scary. I know my stats show pr+, but on my Oncotype test it says I'm negative. When I talked to my BS and the Onc. they just ignored it. I so wish they knew.

pebee

We need to combine all of these threads and then do a roll call... Keep posting information as needed....

hope2011

I am ER+/PR-/Her2- too.  Right now I am waiting on the Oncotype test results.  However, with the PR- status, high Ki-67 score, and being BRCA2+, I'm trying to mentally prepare for chemo.  It is amazing how your doctor can give a few tidbits of information and then you can use Dr. Google until the next appointment to gather information to ask intelligent questions.  Well, I should say Dr. Google and the ladies of Breastcancer.org.

ingoodcompany

So eat more fruits and vegetables and exercise!!! It also says that more of us are HER+. ( not the case on this thread) we all need to do what we need to do to go on with our lives, but I am not going to assume the worse and live in fear of this disease. There are so many different factors at work......stage, grade, size, overall health, etc. This is why they are researching for so long........... it is complicated.