ER PR + is worse?

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CherylinOhio
CherylinOhio Member Posts: 623
edited June 2014 in Stage III Breast Cancer

I was told that being hormone positive was a good thing as far as treatment but I just read this little gem: "Women with hormone receptor-positive tumors are twice as likely as those with hormone receptor-negative tumors to develop breast cancer recurrence." WTF???  Dang, I thought I was going to make it thru this for several years but now...

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    Then I read this:  "Those who have ER-positive and PR-positive tumors tend to have a better prognosis for disease-free survival and overall survival than those with ER-negative or PR-negative tumors."  I don't know...I see women on different threads that are triple positive, triple neg. mixed and they are 5 plus years out... stupid internet!! too much conflicting info!!  URG.. I'm going to the gym!!!

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited March 2013

    I asked my breast surgeon, "If you had to have cancer, what kind would you want?" And she said, "Er + and Pr +." So that's one thing.

    I think hormone negative cancers tend to be agressive and that's part of the reason for the worse prognosis. But as I understand it, if hormone negative patients make it to five years, they are essentially cured. Hormone positive is much more likely to recur after five years. I've read that one in five hormone positive patients will recur within 20 years. So for us the worry will never go away. That's the difficulty of being hormone positive. 

    That's my understanding - I could be wrong. 

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  • ILBoysMom
    ILBoysMom Member Posts: 79
    edited February 2012

    My onc explained it that there are far more treatment options for all of the +++.  However, there is a higher chance of recurrence.   This is why there are these additional treatment options.  Now, here's the problem - what if you are like me and have all three + behind my diagnosis, and I cannot take Herceptin due to my heart function dropping.  Doesn't make me feel very confident.

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    o crap that sucks...almost rather be negative then. so we get more treatment options but it will come back. None of this is any good, now I am going to have to have another meltdown today!! (YELL) ({{CUSS}})  So is there then any point to not smoking and not drinking and eating right? If thsi crap is just going to come back I might as well go back to the way I lived before this nightmare started.....

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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2012

    ck, no doctor I've ever talked to, and there have been a few over the last 3 months, has said negative is better. My surgeon was practically jumping up and down for joy when she told me I was ER+ (I didn't even know what that meant then). Nobody knows if it's going to come back. My guess though is that those of us who adhere to our treatments and take care of our bodies and minds will have the survival edge. JMTB.

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    mine was siked too that I was hormone pos.  You are right though no one knows. I am just having a really bad day.  Sometimes I just think that if its going to come back just hurry up and do it already!! But I am only well not even one full year out from dx so I have a long road ahead of me. I do get strength from this website though.  We all have our dark thoughts I guess.  I went to the gym today and worked out for 45 min. I usually just walk on treadmill at home but decided to join gym. Along with tamoxofin i take all kinds of vitamins and flax seed.  Who knows if it will help but at least my body will be healthy for awhile.

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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2012

    I do know what you mean ck. I finally broke down and started taking the antidepressant my MO prescribed for me, just in case. They have helped so much. I definitely go to the dark place, at least once a day, but I can pull myself back to normalcy faster now. I also have a boatload of vitamins I take with the Exemestane. I have heard mixed things about flaxseed. Wish I could figure that out. Some on this board says it increases estrogen.

    Take care, dear

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    when i asked onc about flaxseed he said its fine.  it is a lignan which can help tamoxofin and bnds estrogren so it is a good thing. I also heard conflicting things but asked him first so I put some in my yogurt and on cereal. I have anti depressants to but dont take them. I guess I just would rather try to do ti on my own. Maybe I should take them.

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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2012

    Thanks for that info! I bought a lot of it but then put it aside after reading this board. I also eat yoghurt every a.m. with blueberries. Now I'll add flaxseed. I'm on Exemestane, but it is a hormonal, so probably has the same effect with flaxseed as Tamoxifen.

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    I was not about to ingest anything that will give this crap a window to come back. Thus the no more drinking, except once a month with my girls. Sigh...jsut sitting with my one year old kitten in my lap hoping he will not outlive me.....ok I had a pic but don't know how to put it here...

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  • LRM216
    LRM216 Member Posts: 2,115
    edited February 2012

    It's all a freaking rotten crapshoot.  I am triple neg.  Approaching my three years in a week since diagnose.  I was fortunate in that I was stage 1; however, that really doesn't mean jack either as many stage 1 gals progress or recur.  The big difference in our cancers is that triple negs are "front-loaded;" in that if we recur or progress it is usually in the first 3 years - those being the most dangerous.  Then comes the magical "5" years, when our chance of recurrence or progression is supposed to drop to that of someone who was never diagnosed.  I don't know that I get too much consolation from that as there are 4 gals right now on the triple neg threads that are 8, 9, 5 and 6 years out from triple neg - so how does that happen????  Hormone positives have so many more drugs to keep recurrence or progression at bay with all the hormonals you have.  But theoretically, the danger for hormone positive, if you look at the threads, are that so many relapse at the end of those 5 years of hormonals.  So, in the end - are any of us guaranteed anything about this beast of a disease?  No, I don't think so.  I think it's just a roll of the dice.  Look at the angels thread where probably 85% of the gals were hormone plus, and so many didn't even make it to 5 years, even with hormonals.  I hate this freaking disease with a passion.

    Linda

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  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited February 2012

    LRM16, I agree with you. I am trying to most things right but I refuse to give up everything. I still have one glass of red wine several times a week. I use Chia instead of Flax. Haven't heard anything negative about those.

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  • PlantLover
    PlantLover Member Posts: 622
    edited February 2012

    I completely agree with you, Linda.  I think it's a freaking crapshoot & I hate this disease with a passion!  By the way ... I LOVE your sig line.  So very true!

    ckgrayoh ... You're still so early in your "journey" almost makes this crap sound like a vacation, doesn't it, lol. 

    It's been 2 years and 4 months since my diagnosis and I think I have just finally hit the stage where I have come to accept whatever is going to happen regarding recurrence or progression is what is going to happen.  I try to take better care of myself and I know I damn sure threw every treatment they told me to at it, but I'm not going to let it rule my life everyday. 

    Hell, for all we know, we might get hit by a bus tomorrow, ya know?

    I really do believe that after awhile you reach the stage of acceptance and it feels sooo much better.  Hang in there!!!

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited February 2012

    Yup, crap shoot at best, but my docs too were "happy" that I was highly ER/PR+.  They never discussed that being negative was better for long term survival, and until this thread I hadn't heard it anywhere else.  Where is that coming from?  Anywhoo, it is what it is, and I'll continue to take my Tamoxifen and get organic milk and avoid any added hormones like the plague from now on thank you very much!

    Sharon

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  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited February 2012

    Luminal A tumors (ER+/PR+, Her2-) have the best prognosis, esp. when the patient takes antihormonals such as tamoxifen or arimidex. Believe me, I've spent days reading scholarly papers on this subject! But...there's no guarantees with any form of bc, and so many factors can play into survival.

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  • bak94
    bak94 Member Posts: 1,846
    edited February 2012

    Unfortunately we don't have a choice which we get and to me it all seems bad!!! I know we all like to compare and say "well, at least I am better off than that" but the truth is we do not know. As a triple negative I get so tired of hearing about all the doom and gloom related to it, but what can one do? I can't change that, if I could I would just say I don't want it at all.

    I seem to remember reading something that said er/pr positives tend to recur more in the breast than triple negatives do. If you have a recurrence, in the breast is where you want it to be:) And I think that is what you read, not higher distant recurrence.

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  • gutsy
    gutsy Member Posts: 391
    edited February 2012
    I am not sure why you would write anything like that, is there even any truth to it.

     "Look at the angels thread where probably 85% of the gals were hormone plus, and so many didn't even make it to 5 years, even with hormonals."

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  • Angelfalls
    Angelfalls Member Posts: 849
    edited February 2012

    It's definitely a crap shoot! I'm a hormone positive girl, did mx, chemo, rads, Tamox, more rads, ooph, Arimidex and now Xeloda. 3 diagnoses in under 8 1/2 years, age 31 at initial dx, 40 now. What more can I do, other than keep throwing everything at it to hold it back as long as I can? Statistics are not individual cases; for all those who do better than the stats, that sadly means someone isn't doing so well... Sorry, but that's realism, not negativity. Cancer is just one devious b*****d. Fingers crossed for all of us - we need all the luck we can get!!!

    Angelfalls xx

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    to gutsy,:  was havnig a fine day until I stumbled across something from a website about excersing. But I think theTRUTH is that we are all pretty much in the same boat.  I dont' want to look at the angels thread, more depressing there.  As a hr pr +, do not want to go there!!  Just have to hope for the best.  I seem to recall there somehting about a higher reoccurence after 5 years which means that most people may have been off the anit hormones since we are only supposed to take it for 5 years. Some people take it longer though and I hope I can too, or something else if I am in perm menopause.  I am off to the gym.

    bak94- thanks for reply....since I am having the other breast taken off in March, that is better news.

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    Well just got back from talking wtih someone in my bs office.  She explained the er pr = and - thinkg to me. Whew, I feel a little better... hope everyone is having a good day.

    If anyone interested in knowing what she told me, pm me I don't want to upset anyone on this thread or seem like I am talking like I am an expert because I am not, just someone who freaks out now and then.

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  • diana50
    diana50 Member Posts: 2,134
    edited February 2012

    i guess i believe that being estrogen and progestin postive is a good thing.  there are options for us.  so, i had four treatments: surgery, chemo, rads and hormone treatment.  if there ever is a progression; there continues to be hormone treatment.  i am 10 years out.  so yeah, i still believe you have to do the dance and all it involves.  the rest is a crap shoot.

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012
    When I asked about the er pr positve these iare some of the things I was told:

    the er pr + group has a more likely chance of a reoccurence in the same affected breast or a new cx on other breast BUT after 5 years the chance goes down to near someone who was er pr -.

    ER PR- group has a strong chance of reoccurence in the first 5 years but after 5 years they go down to having the same chance as someone how never had cancer.  

    Also after so much time on Tamoxofin (5 years) there is a switch to an AI such as Armimidex, I think that is what it is called. She said that the positive group rarely sees a spread to the brain so that is good.

    But it is all still a crap shoot and it still all sucks!!

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  • PLJ
    PLJ Member Posts: 373
    edited February 2012

    I received my hormonal status before my BS so when I told her she said "Oh, I'm so happy! Most of my younger patients are TN." I believe she was thinking TN is typically more aggressive in the younger population, which carries a poorer prognosis. That said, none of us knows what will happen. I have a friend who is a young, TN gal. She had her tumour for 10 years (doctor kept telling her she was too young for bc and she didn't need a mammo.) She finally demanded investigation and the mass was over 8 cm, nodes were matted and just a mess. BUT, no mets. She is 3+ years out and *still* NED!!!

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  • BelaT
    BelaT Member Posts: 217
    edited February 2012

    When I found tumor, My hubby who is doctor was terrified (didn't tell me) because he was worried that I will not be hormon +ve. Yes it canreaccure but better treated. Luckily , I am hormonr +ve or thats what I have been told that Its better to be.

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    PLJ- Good for your friend. Can't believe a doc would say that and not check it out??? Glad to hear she is doing ok 2 more years and she will be back down to almost no chance of reoccurence.

    Bela- It is better in that we can be given anit hormonal drugs.  negative or positive we all in the same boat and we need to keep it afloat together!! (Was that too corny)?

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  • BelaT
    BelaT Member Posts: 217
    edited February 2012

    Hi ckgrayoh, Its not corny and I was thinking same as you, we all are facing BC and thats all. No one knows how we will react and cure will.

    god helps us. 

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  • lago
    lago Member Posts: 17,186
    edited February 2012

    ** This is a general guide. Note that depending on size, grade and node status treatment will vary from what is posted different than posted.**

    -------------------------------------------------------------

    Triple negative is the most aggressive. It tends to reoccur in the first 3 years. Treatment options are surgery, chemo and/or radiation. After 3 years the recurrence risk goes down significantly but it's not 100%

    HER2+/Hormone negative is the next most aggressive. It too tends to reoccur in the first 3 years. Treatment options are the same as triple negative but also include Herceptin. After 3 years the recurrence risk goes down significantly but it's not 100%

    Triple positive has a better prognosis than the two above.. Because it's HER2 though it is very aggressive as well with recurrence more likely in the first 3 years. After 3 years it goes down but not sure it goes down as far as triple negative/hormone negative+HER2+. Treatment options are surgery, chemo, herceptin, hormone therapy and/or radiation

    Hormone positive is the least aggressive. It tends to be slower growing (low grade) but not always. Treatment Treatment options are surgery, chemo, hormone therapy and/or radiation. Recurrence is a bit higher in the long term but still goes down significantly after 5 years.
    --------------------------------------------------
    The one thing I have learned from this disease is there is a pro & con associated with all the info. All cancer sucks.

    Here are some links of interest:

    tumor subtypes (luminal A, B, triple negative & HEr2 explained:
    http://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html 

    Risk factors for tumor subtypes:
    http://www.breastcancer.org/risk/new_research/20090522.jsp  

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  • BelaT
    BelaT Member Posts: 217
    edited February 2012

    Thanks Lago, yes all cancers suck full and final opinion . I am so sad that they are not doing enough to figure out with stemcells. there has to be something , hate this .

    just frustrated at thought of recuurance. 

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2012

    Thanks Lago....good explanation of all....

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  • lago
    lago Member Posts: 17,186
    edited February 2012

    Bela in order for you to be a survivor you need to live your life. Don't assume you will get a recurrence. I mean you don't assume you are going to get heart disease yes it is the #1 killer of women in the US. 2nd leading killer is lung cancer (followed by breast cancer).

    Prognosis for DCIS stage 1 is excellent. Not 100% but still the odds are in your favor that you will beat this. Now go out and start living your life. BTW I'm a bit confused by your stage. I though DCIS with no nodes was stage 0. linky

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