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ER+PR-HER-

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  • dogeyed
    dogeyed Member Posts: 84
    edited October 2011
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    PLJ, fab link, really helped me in ways you don't know.  I would like to talk for a few minutes about SSRIs and being E+PR-.  I have been on SSRIs for 10+ years, and one is my continuing Zoloft, but a few years ago I took Lexapro for a couple years and it about did me in, had to go back to Zoloft.  So, I'm reading on a link within your website, and it talks about how those drugs can sometimes create too much serotonin in the breast tissue, which they find contributes to tumor growth.  I had already read elsewhere that some E block drugs won't work with people who take SSRIs, so I knew there was some connection.  But your article took it another step and explained why this is.

    So, I'm thinking, I've not liked being on these SSRIs becuz I remain depressed so often, altho they do provide tangible benefits to me, so if I were to switch off to another class of antidepressant like tricyclics or get off them altogether (very hard to do), I would stop the tendency for my breasts to have too much serotonin and thus stop that part of cancer risk, and probably change the E+ to E-.

    Now, the catch is, I can't help but think the temporary use of Lexapro is the bad guy in this, since I had such a hard time with it on many levels, and since I always wondered why in the world did three cancers blow up in my boob, within three years of being on it, so maybe staying on Zoloft will be okay.  It is milder in its effect than Lexapro, I feel like myself when I didn't on Lex, and I went into one of the deeper depressions on Lex I've ever been in despite being on it.  Could be the serotonin thing was working rather too hard, so not only did it turn on me and not work, it may be one of the reasons for my cancers.

    So, I shall try to find a website that may discuss complaints folks had of Lexapro, or search for connex between Lex and cancer.  Now, one thing IS true, and that's something else I read, that women who are on SSRIs don't have any significant risk relating to cancer... but let us suppose it is only a few drugs that do, and when they average them together, they wind up with no risk.  I suppose I COULD do a poll somewhere in here, asking who is postmenopausal, got cancer, and took Lexapro or other SSRIs within five years of the onset of disease.  Or if anyone here, postmeno or not, took it, hey, why don't we start with putting it in our posts here, cuz if a bunch of us took diff SSRIs, the result might suggest I wouldn't have to go thru the terrors of going off Zoloft, and blame it on Lex, which means I'd be good to not take the E-block stuff.  I guess I'm really stubborn on this issue of fooling with hormones. 

    Anyone want to share thoughts?  I close with saying I took Lexapro for two years, 2005-2007, and noticed change in breast late 2010 (diagnosed early 2011).  Thanks for the link again.  GG   

    P.S.  I did notice some folks talking about Lexapro and SSRIs in the Relationship..Depression forum on here, not much can be derived, other than some were taking it and other kinds, obviously with cancer.  I'll do some more looking around on the general web when I have time.

  • kal21
    kal21 Member Posts: 20
    edited October 2011
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       This is exactly the board I need. I had conflicking results about PR- Also I am 57 and was still having periods but now am not.. so my treatment is really conflicking...I have been on tamoxifen since March.

    I will continue doing researchh also..

  • pebee
    pebee Member Posts: 96
    edited October 2011
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    I was on Paxel.  An endo wrote me a prescription for another SSRI, when in reality there was something wrong with my thyroid.  I got the thyroid fixed and that solved alot of issues.....

    I always had a hard time sleeping - I did a sleep study and they said that my brain never shut off - it constantly was repeating the day and the stressors.  So, I go on sleeping pills - and they make me psycho.  So, a regular natural path gave me a prescription for alprazalam which worked perfectly.

  • dogeyed
    dogeyed Member Posts: 84
    edited October 2011
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    Hey Pebee, At some point in my chain of medicines, I finally was able to sleep well, too. Thanks for your info on the Paxil, which is an SSRI that is named as not working with Tamox, on account of "the connection" I'm thinking over.  Not to say, of course, to ANYone that that has anything to do with anything!  Just me checking things out.  I take a benzo too, unwound me good!  GG

  • pebee
    pebee Member Posts: 96
    edited October 2011
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    This was in the precancer days - there is alot of information out there that suggests that the SSRI don't work - increasing seraton levels does not decrease depression or the "bad" moods, feelings, etc.  So, if this is affecting you= then something else is up and you need to get that fixed to feel better.....

    I won't ever take one again, unless it is known and proven to fix something else.  IMHO 

  • dogeyed
    dogeyed Member Posts: 84
    edited November 2011
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    ALL, I said I would update.  After some looking around about SSRI seratonin and cancer and estrogen, nearly everything I read indicated the SSRIs really don't have a lot to do with cancer.  I was recently stuck on the idea because of a documentary about Stanislaw Bursynski (there's a forum here for him) and his use of peptides to fight cancer, and somehow I wondered how come some people have enuff peptides and some don't, and I just jumped on serotonin maybe being involved, I don't remember how I got those two ideas together, I think it was a link someone provided here that I read a thing or two about serotonin, may have even misunderstood what it said!

    Suffice to say, I have decided to leave alone the notion that SSRIs or anything else has to do with creating a cancer atmosphere, because I just don't have the chemistry background to fool with it, and a brief look round didn't jump out with anything important about it.  I cannot make sense of it anymore.

    But even tho this is a forum for E+ people, which I am, I did find out that a peptide from European honeybees was formulated that apparently had some effect on stopping cancer in lab tests.  I do not think eating honey translates into no cancer, not by a long shot, but I recently began eating honey again on my toaster waffles, and therefore will continue to do so.  That has nothing to do with E+ people's concerns.  It's just where I ended my little foray into research on why and how a possible connection with SSRI serotonin and estrogen and cancer might exist, and I wound up spending most of my time looking at peptides, so I left the SSRI connection behind, just don't have the brainpower or really any good leads that indicate this might be so. 

    This documentary on Burzynski really got me going a little too hard on these ideas, and I had to think them thru in order to lay cancer to rest.  I have to get it out of my mental life now that my treatments are over.  Sorry if I strayed with my intrusions here, other than I AM E+ and hate having to take a pill for it.  GG

  • pessa
    pessa Member Posts: 137
    edited November 2011
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    I have been on low dose aspirin for many years (probably about 8 years before I was diagnosed with BC).  Obviously it did no good!

  • PLJ
    PLJ Member Posts: 65
    edited November 2011
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    Thanks for sharing your experience, Pessa. I do not believe that taking aspirin daily is the answer, but I do think that it will help to create a cancer unfriendly environment. That, combined with other lifestyle changes such as plant based diet, regular exercise, low to no alcohol consumption and other factors within our control, will make our 'terrian' more difficult for the cancer to survive and thrive. Plus, it helps with Tamox. blood clot risks and reduces the risk for other cancers.

  • marthah
    marthah Member Posts: 195
    edited November 2011
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    Good afternoon, ladies!

    I'm just dropping a quick note so I can bookmark this thread and come back to it. And yes, I am a ER+PR-HER- gal, too. 

    Look forward to chatting with you!

  • BellaJean
    BellaJean Member Posts: 32
    edited November 2011
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    Recently diagnosed and have had surgery up here in Toronto. Wondering if any of you in similar situation. My ER+ status is 1-5% so I am told to think of this is a triple neg. No clear direction on chemo as "my tumour is small and no node involvement". What I am wondering is if anyone here has passed on chemo and just had radiation. Also, is anyne getting hormone therapy with such low ER receptors.

    They sent my sample off yesterday to US for oncotyple testing but it will take 2-3 weeks for results and I need to decide on rad before then. I'd appreciate any thoughts. BJ  

       

  • marthah
    marthah Member Posts: 195
    edited November 2011
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    Bella,

    Is there any way you can postpone your rads decision until you get the Oncotype testing results? This helped me clarify my dx a great deal. 

  • kal21
    kal21 Member Posts: 20
    edited November 2011
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      Marthah,

    So I am wondering what did your Drs say about being PR- I really am not sure what I am because onco DX said neg but pathology said 60% positive? Did they tell you PR - was worse and tamoxifen won't work?

    Thanks

  • BellaJean
    BellaJean Member Posts: 32
    edited November 2011
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    Hi Marthah,

    Not sure if I can postpone. I'll know tomorrow. Wondering how your oncotype testing results were helpful. Do you mind sharing? Thanks.

    Also, next week I am seeing an MO who specializes in triple neg and olw ER+ tumours. I plan to ask her about the PR- and will share with all of you what she has to say, if anything.   

  • marthah
    marthah Member Posts: 195
    edited November 2011
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    Bella and Bar,

    I had to go back and look up my path report and Oncotype before I could answer. 

    ER: Path report showed 95%; Oncotype score 9.0 (positive is >/= 6.5)

    PR: Path report showed 70%; Oncotype score 5.2 (postive is >/= 5.5)

    Her2: Inconclusive Path -- one test showed negative, barely, second test showed "equivocal" (which is the same as negative); Oncotype score 10.2 (equivocal is around 11.0; postive is >/= 11.5)

    The Oncotype testing really verified my Her2 status, as well as my PR status.

    To be honest, it's been my impression that PR status is the least important of the 3, or at least of the 3 the least is known about this variable. This is probably my bias because I haven't paid as much attention to it. 

    I believe that the Oncotype testing is more reliable than the path reports, particularly if the path results are questionable. It seems to solidify anything that is up in the air.

    I have also gotten the impression from my MO that ER+/PR- and ER+/PR+ is treated the same...hormone suppression is hormone suppression? 

    Triple negative, on the other hand is another matter entirely, Bella, so I think it's very good that you are seeing an MO who specializes in triple negative. Bella, there are trip neg threads on this board. You might also check out cancer.gov (NIH's website) and cancer.org (American Cancer Society). 

    Bar, I'm scheduled to start Tamoxifen next month, so nope, the PR status is not worse, and the Tamox is in the standard of care.  It looks as though you've just joined this club that no one wants to join. Sorry you are here, but it's nice to meet you. Bella, you too.

  • marthah
    marthah Member Posts: 195
    edited November 2011
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    Some info from the NIH's website on Oncotype testing:

    Oncotype DX: This test helps predict whether stage 1 or 2 breast cancer that is estrogen receptor positive and node-negative will spread to other parts of the body. If the risk of the cancer spreading is high, chemotherapy may be given to lower the risk. 

    This is probably why I haven't paid much attention to my PR status. My ER status was so high, there was no question about the chemotherapy. 

  • BellaJean
    BellaJean Member Posts: 32
    edited November 2011
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    Has anyone ever had or discussed with their MO having chemo after rads?

    My oncotype test results won't be here for at least another 2 weeks,  and the Tumour Board is sayng that they really don't know the value of chemo for me. As rad therapy is time senstive, I am considering getting it done as I wait for the oncotype information. Then do chemo if indicated. I don't want to lose the rad window as right now that seems to be the best therapy for me; perhaps with hormone therapy to follow. This depends on my ER+ status. Wondering has anyone here has had the dilemma and what did you do?    

  • kal21
    kal21 Member Posts: 20
    edited November 2011
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      When I was waiting on rad they said they would not start till my onco got back.So I called ALL the time till I got my results.Interesting to see someone again with PR-.....I had surgery Dec 7th but did not start rads till Jan 13th.. because I still had to get measured and all for the treatment.. so it took awhile..

  • BellaJean
    BellaJean Member Posts: 32
    edited November 2011
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    thanks 630 for your replay. And good to see that you got the rads within the recomended time frame. That's great. My problem is that due to delays with approval my oncotype results will most likely not be back in time to see them before the time limit is out for rads.

    My rad therapist is willing to do the rads and then if I need chemo to get someone to give it to me after my rads are done. I am just wondering if anyone else has taken that option. I know it is not the standard protocal so I am just wondering "has anyone had chemo after rads?"   

  • otter
    otter Member Posts: 757
    edited November 2011
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    BellaJean, I don't know the answer.  The only thing I can think to suggest is that you query your med onc and the rads onc, to see what they say about the sequence and scheduling. 

    I do know what you mean about a delay in the reporting of Oncotype DX results.  I was told it would take 2 weeks just for the path lab at my cancer center to prepare and send the samples to Genomic Health.  That seemed incredibly slow to me, but everyone at the cancer center told me it just took that long.  Oh, well...  And then it would take another 2 weeks (?) for Genomic Health to run the test.  So, I figured on having to wait a month for those results, which were critical to the chemo question because my tumor was ER+ PR-.

    When I hadn't heard anything after a month, I started calling.  Turned out, the sample that had been sent to Genomic Health did not contain any tumor tissue.  Apparently, the technician in the pathology department had send my biopsy sample, which was only 10% tumor.  (The rest was fibrocystic tissue.)  He/she had not sent slices of the whole 1.8 cm tumor that was removed at my mastectomy.  As soon as Genomic Health discovered there was a problem with the sample, they sent a FAX to my oncologist to notify him.  But, the FAX had been sitting in the in-box in my med onco's office for 5 days because my med onco's nurse (who I guess read his FAX's) was on vacation.

    I blew a gasket.  I called everyone I could think of, including the oncology departmental office, the pathology department, and the hospital ombudsman, to complain. I demanded that the proper sample be prepared and mailed to Genomic Health -- and, it should not take another 2 weeks to get that done!  I also insisted on being assigned a different oncologist, since this one (or his staff) had clearly dropped the ball by letting that FAX sit there unread while I was waiting to hear whether or not I would need chemo.

    The new sample was in the "overnight" mail 48 hours later, and Genomic Health ran it "STAT", so I finally got my Oncotype results 7-1/2 weeks after my mastectomy.   The med onco called me personally to tell me the results (score = 26), and to say that he was recommending I start chemo "as soon as possible" because so much time had elapsed since my surgery.  Oh, really???!, I thought.  Now you're concerned about the delay?

    Even though it was contrary to hospital policy, I was given a different oncologist, whom I really like.  There was an official investigation at the center to find out why it was taking so long for the pathology lab to prepare samples for Oncotype DX testing, and why the wrong samples were being sent.  It turned out that mine was not the only case in which that had happened -- several other patients had experienced the same thing.  I'm pretty sure somebody got fired, or at least reassigned to a less important position.

    ... sorry.  I got carried away.  This happened more than 3-1/2 years ago, but I guess I still get worked up about it.  I sure hope you get your results soon, and can work out the schedule.

    otter

  • BellaJean
    BellaJean Member Posts: 32
    edited November 2011
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    oh Otter, I am so so sorry for what you went through. It is just an awful story. And thank you for sharing it with me. The more I read on these threads, the more I am astonished at what women who are struggling with BC have to go through.

     As I have a top radialogist, if my oncotype results are not in, I am going with rads first and hope that if I need chemo he can get it for me. I need to trust someone; and feel safe with his care.

    What concerns me is that my profile is exactly the same as yours, and I've been told I probably won't need chemo. I was totally surprised at your oncotype score. If you don't mind my asking, had anyone thought your score would be that high. I've been told that they think I am low to intermediate on my oncotype score so that chemo would be of little benefit? 

         

  • otter
    otter Member Posts: 757
    edited November 2011
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    Ask away! 

    Nobody imagined my Oncotype score would be that high.  I had a Stage I tumor that was ER+, sluggish (we thought) -- "only" Grade 2, and not spread to my nodes.  My med onco (the original one) was on the fence -- he admitted he had no idea whether chemo would do me any good. 

    Even before he submitted the sample for Oncotype testing, he was urging me to participate in the TAILORx trial.  He said if my Oncotype score came back between, say, 15 and the low-20's, it was impossible to predict whether chemo would help me.  He compared it to a "coin-flip".  So, he reasoned, why not enroll in TAILORx?  Then the decision about chemo vs. no-chemo would literally be decided by a coin-flip... unless my score was either very low (below 11, I think), or moderately high (25 or above, IIRC).

    When my score came back at 26, it solved the dilemma.  I did go back and read about how the formula for Oncotype scores was developed, and I learned that ER+ or PR+ (or both) will make the score lower, but either ER- or PR- (or both) will make the score higher.  HER2+ also produces a higher score -- much higher, usually.... but my HER2 FISH test result was negative.  So, I guess I really don't know what accounts for the 26.  It must have been one of the other components of the score, like Ki-67 or HER1... neither of which I was given.

    You were told correctly -- the lower the Oncotype DX score, the lower the recurrence risk, but also the less likely that chemo will be of benefit.  Basically, chemo works best (is more likey to kill the tumor cells) if the tumor cells are growing quickly and aggressively.  So, we'll all hope for a low score on your behalf!

    otter

  • BellaJean
    BellaJean Member Posts: 32
    edited November 2011
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    Hi Otter,

     Thanks for sharing this information. I had a lumpectomy, not a mastecomy. Wonder why the difference. My tumour was 1.2cm. But yours is still below the 2cm mark. Also, my ER status is really low: between 1-5%. If you are right that PR- means a higher oncotype score then I better be ready for that. Just called and my results are on track to be ready by next Monday or a day or two later, so I should have that information before I need to start rads. Now the long anxious wait starts again! FYI: my MO is really not good and need to change her so that is adding to my confusion. Should have listened to the reviews of other patients who rated her as a 1 out of 5 and said not to go to her. Again Otter, thanks for being so gracious and helpful. Stay well. 

  • momand2kids
    momand2kids Member Posts: 118
    edited November 2011
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    Just had my 3 year visit where I brought this up.  I was ER/PR + her 2- on my pathology from two hospitals, and the oncotype had me at slightly PR-....I had a lumpectomy

    My onc says that there is lots of confusion about the role of PR-- and the ER tends to be the driver for treatment  But, like Otter, my oncotype was a 27-- which I think no one expected--but also, tumors are very variable and the slice that the oncotype people got could have been slightly different than what the hospital had.....

    For me, in the end, it didn't matter-- the score was the driver--intermediate.  It all worked out-- I am completely healthy and feel I did all I could to prevent a recurrence, which I am not planning on having!!!! 

  • marthah
    marthah Member Posts: 195
    edited November 2011
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    momand2kids,

    Thanks for sharing your story! Always love to hear from the NED's! You reinforce what I recall from a discussion with my MO, too, about the role of PR and ER being the driver. It seems so long ago...last spring. Did my chemo through the summer and am just now coming out of the chemo brain fog as I finish up my rads. 

  • momand2kids
    momand2kids Member Posts: 118
    edited November 2011
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    Thanks Marthah--

    I actually consider myself cured!!! That is the language onc uses and that is what i use..... 

  • kal21
    kal21 Member Posts: 20
    edited December 2011
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     Even more upset now.. computer is giving me a hard time.. I was confirmed today that I am PR-

    I was looking at biopsy report that said 60% positive he said not the surgical one.. really.. how can that be wrong.. went to 2 different labs.. onco was also negitive.I had never seen surgical one from a year ago.

    Anyone still talking about this.. he said treatment the same.. well not from what I have read..

    Help anyone..

    Kathy

  • ruthbru
    ruthbru Member Posts: 47,238
    edited December 2011
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    it's the estrogen being positive that is the important thing.....

  • kal21
    kal21 Member Posts: 20
    edited December 2011
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    I read on good web site that if PR- tamoxifen works against it?

  • pessa
    pessa Member Posts: 137
    edited December 2011
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    What do you mean "works against it"?