Help! How many er+ pr- with long term survival?

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Rachel1
Rachel1 Member Posts: 363

I am almost 3 yrs. out (May 2010) and just had my 3 month onc appt. He was talking about my dx and said I'm er+ and pr-. At the time of my dx he thought the pr was a false negative  and now he says no, it's pr- and that has a worse prognosis. I need to hear from women who are er+ and pr- and doing okay. He said recurrance would tend to happen earlier if it was going to happen. I was in too much shock to ask him to define earlier as it could mean right now.  Also, I am still seeing him every three months. Is this because he's worried about my prognosis?

In tears right now. Seems like it won't ever end.

Rachel

dx 5/2010 IDC 4.5, grade 3, 7+ nodes, brca2+, er+, pr-

ddAC/T, rads, oomph, tamox 2yrs, arimidex 

Comments

  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2013

    Oh, heavens, sometimes I wonder about doctors. How they say things almost offhandedly that can so upset us.

    I don't know anything about pr- but I just wanted to give you a hug!

    I have seen a few er+pr- people around, hopefully someone will be along to put your mind at ease a bit. Hang in there!

  • JacquelineG
    JacquelineG Member Posts: 282
    edited January 2013

    Hi there!

    I have a very similar diagnosis to yours -- even the BRCA2 part! I know I'm only a year and a half ahead of you in diagnosis, but it's something and I'm doing great (moving farther and farther from that earlier recurrence your doc talks about). Don't listen to him. There have been conflicting studies on whether PR- is really worse or not and just yesterday i read stats from MD Anderson over a long period of time that showed the survival advantage of PR- was BARELY lower than PR+ -- like 81% vs 83% or something to that effect (and they were high survival rates for our Stage, btw!). One thing I have heard is that the AIs can be more effective than Tamoxifen for PR- and i see you have switched to Arimidex after 2 years which is exactly what i did too!

    ALSO - make sure you take a look at Carmelle's post today about her 10 years survival! She is PR- just like us!

    We will be fine! And Kerry is right! Doctors have no idea how words can haunt us - to them it's nothing, to us, it's the difference between being hopeful or being terrified!

    Jackie

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited January 2013

    Funny...I just responded to a 10 YEAR SURVIOR POST with the er+ pr-. ... IIIc....



    How about that?!? WHOOT WHOOT!

  • jenni__ca
    jenni__ca Member Posts: 461
    edited January 2013

    i definately fall into the ER+ (99%) and PR- (i think it was 0) .....

    i saw my onc every 3 months for years, then every 4 months and now 8 years out twice a year ... had a lumpectomy(7 cm)/snb (1/4) followed by a mast (another 7 cm) .... 6 months of dose dense chemo (adriamycin, taxol, cytoxan), 6 weeks of rads, and 7 years of arimidex (so far) ....

  • Rachel1
    Rachel1 Member Posts: 363
    edited January 2013

    Thanks KerryMac, a hug from you makes my day. I love reading your posts. Thanks for your support!

    Love,

    Rachel

  • Rachel1
    Rachel1 Member Posts: 363
    edited January 2013

    Jackie-- Thank you. Your words, we will be fine, are just what I needed. Thank you for your words of wisdom! Your research from MD Anderson makes me feel so much better -- they're nothing to sneeze at. That's great news. My onc. said if I wasn't tolerating the AI he would put me back on tamox., I hate the Arimidex, but I'm definitely staying on them particularly after hearing your study.

    Fuzzylemon -- I saw that after I posted. It's so awesome!! 

    Jenni ca -- 8.5 years! Thanks for giving me your oncs. timeline and for sharing. It's good to meet other pr- women.

    You ladies are the best. Thank you for talking me down and giving me your loving support!

    Rachel

  • Outfield
    Outfield Member Posts: 1,109
    edited January 2013

    Oh Rachel, I found my lump 5/2010 but wasn't diagnosed until 6/2010 because getting it evaluated had to wait until I got back from vacation.  Also very similar diagnosis to yours, except I'm not BRCA+.  An onc I saw last year said something similar very offhand to me, that "these big aggressive cancers usually recur early if they're going to recur."  Took me a while to recover from that.  They really don't realize the power of words.  Sometimes it goes the other way - I remember sitting hopelessly in my first oncologist's office and him taking about chemo and getting to "the other side" (he retired).  I felt such a surge of hope, "Oh, there could be an other side?"  

    I try so hard to remember that unless I can do something to affect my prognosis, the numbers don't matter.  I can't change my PR status.  But I can exercise, I can eat well, I can take my meds.  What happens to me happens to me regardless of the stats, so I've got to concentrate on doing everything I can to make my personal chances the best they can be.  Numbers are just averages, and we're not averages, we're individuals.  

    Hang in there.  The best we can do is the best we can do.



  • DCMom
    DCMom Member Posts: 624
    edited January 2013

    Rachel- Yep.  Ditto above.  It is so easy to get our feet knocked out from under us.  It really doesn't matter in the long run.  Throw the sink at it and consider it licked.  Staging is about treatment.  Cancer type is about treatment.  We got the sink (and maybe a toilet or two).  

    Oh and my Mom always says, what you worry about won't happen.  So I try to worry about everything and in my twisted little mind comfort myself that this is preventative medicine.

  • kindone
    kindone Member Posts: 523
    edited February 2013

    Rachel, I am almost 5 yrs out, and I am ER+PR-Her-. I still see my onc. every 6mos .We just never know whats going to happen.  Try not to worry about it,  My onc told me they go by the ER+ and not to worry about being PR-.  Best of Luck to you.

    Betty

  • Lillymillie
    Lillymillie Member Posts: 192
    edited February 2013

    Hi ladies, I'm also Er+ Pr-, Her2-. At my pathology appointment, BS didn't really discuss the the PR-, she said the the ER+ was the important bit. I was in tears after meeting my onc especially when he said that I must have been very disappointed with my actual results... stating the obvious or what! He is a very well respected onc and I feel they treated it aggressively. He showed me a graph which suggested reoccurence was more expected in first 2 years (You are 3, happy dance!) I'm still struggling not to lose my mind when I get new pains! I had only read about pr- stuff later and did worry a little but am liking what JacquelineG post about MD anderson stats. I was excited to hear the benefits of tamox for 10years but after reading about tamox being less effective in pr- I got a little worried (don't know how less effective though). I had asked both BS and onc about Ooph and onc said not necessary (at 36 my heart and bones needed some er??) but my period just returned last week so not sure if I need to be more aggressive with reducing my er. I still very unsure about this area and am wondering if any you ladies had any thoughts. Great to hear people doing so well.

  • karen1956
    karen1956 Member Posts: 6,503
    edited February 2013

    I'm ER+ and PR+ and my onc saw me every 3 months till I was 5 years from Dx.....I'm just celebrated 7 years and see my onc next month....I've been on a 6 month schedule and guessing he'll keep me on the 6 month schedule....

    I don't think your onc has much bedside manner.....

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