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  • PoohBear-61
    PoohBear-61 Member Posts: 74
    edited April 2013

    Thank-you kindly Vora and min937

    Everyone is so helpful on this thread .......Laughing

  • PoohBear-61
    PoohBear-61 Member Posts: 74
    edited April 2013

    Hello Ladies

    Even though i am in radiation right now ....ive decided to pay for the onco test .Meeting with my MO in 2 days to order it ....i am assuming it takes 2 weeks to get the results which will coincide with the end of my rad treatments. 

    (Initially scheduled to start zoladex and tamox after rads)...... but still scared of shutting my ovaries down especially if i have a low Onco type score .    

    I have been doing a lot of research and came accross the Cancer Care Ontario Guidelines for Ovarian ablation in early stage invasive BC . These guideline were endorsed by ASCO so i remain confused as to the benefits of Ovarian Ablation and weather or not its an overkill .

    ______________________________________

    http://jco.ascopubs.org/content/29/29/3939.full?sid=6ac9c801-2454-4070-8484-428b3e736999

    I cut a pasted the following ........below

    THE BOTTOM LINE

    ASCO endorses the CCO Practice Guideline on Adjuvant OA in the Treatment of Premenopausal Women With Early-Stage Invasive Breast Cancer                           

                                                          

    Intervention                                                         

    • OA for premenopausal women with hormone receptor–positive early-stage invasive breast cancer.

    Target audience                                                         

    • Medical and surgical oncologists.

    Key recommendations                                                         

    • OA is not recommended either as an addition to systemic therapy or as an alternative to systemic therapy.

    • OA should be considered only for women who will not receive systemic treatment (eg, those patients who cannot tolerate or refuse systemic therapy).                                 

    Major Guideline Recommendations and Qualifying Statements

    The CCO guideline recommendations for the question of how adjuvant OA as systemic therapy improves clinically meaningful outcomes                        (ie, disease-free survival, overall survival, quality of life, and toxicity) when compared with and/or added to other systemic                        therapies, specifically chemotherapy and tamoxifen, are as follows (taken verbatim from the CCO guideline):                                              

    • OA should not be routinely added to systemic therapy with chemotherapy, tamoxifen, or the combination of tamoxifen and chemotherapy.

    • OA alone is not recommended as an alternative to any other form of systemic therapy, except in the specific case of patients                              who are candidates for other forms of systemic therapy but who, for some reason, will not receive any other systemic therapy                              (eg, patients who cannot tolerate other forms of systemic therapy or patients who choose no other form of systemic therapy).

    https://www.cancercare.on.ca/toolbox/qualityguidelines/diseasesite/breast-ebs/

    the key evidence  says that " 6 randomized trials were identifired that compared OA plus tamoxifen to tamoxifen alone . None of these trials reported significant benefit for overall survival or other important outcome for the combination compared to tamoxifen alone ".

    ____________________________

    Maybe someone could help me out .....i keep finding more info that says no benefit so not sure if the side effects ( bone loss ,etc, etc etc etc ) would be worth it ????????? so confusing.

    I know the SOFT trial should clear this up ....but until then i am thinking that ( if my onco score is really low ) i would do tamox and wait for the december results before starting Zoladex. if results are intermediate then id start zoldex knowing that i could come off of it in Dec based on the results and if my onco score is really high i guess i would be offered Chemo ( if my MO agrees to do this AFTER rads as it is not normal procedure here to do chemo after rads.)

    Any thoughts or insight ... ( sorry for long thread )

    I am new to all this and am so confused .

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2013

    Pooh...The SOFT trial preliminary results will PROBABLY be announced sometime around December.  I want to make it very clear to you that the SOFT trial and TEXT trial are the most buttoned up trials!  At the December 2012 San Antonio Breast Cancer Symposium there was NO MENTION AT ALL about the trials.  The only reason why I know that PERHAPS the PRELIMINARY results will be known in December is that the half-way point for the trials is in October and I spoke to the bio-statisticians who are accumulating the data and they said they will begin processing the data at that point.  Will the data be presented at this year's San Antonio Breast Cancer Symposium....NO ONE CAN SAY FOR SURE.

    So, whatever treatment decision you are deciding on NOW, SHOULD NOT INCLUDE THE EXPECTATION that you will have MORE INFORMATION FROM SOFT and TEXT IN DECEMBER TO GUIDE YOUR TREATMENT PLAN.  We may not have the SOFT and TEXT data until an even later date.

    Remember, no treatment decision is written in stone, that is unless you have a high OncotypeDX score that indicates that you would benefit from chemo that would make the ovarian suppression protocol decision moot.

    May I suggest you not over think your options until you have more information regarding the Oncotype DX test and you meet with your MO.  I was fortunate to have an MO that laid out all of my options.  It wasn't until several months AFTER I began my active therapy did I realize how thoughtful my MO was in relating to me my various options.

    I also strongly recommend that you look at the 2013 NCCN breast cancer treatment guidelines.  Register on the NCCN's website and read the professional version...NOT the patient's version.  The professional version has much more information.  Also read pages 95-100....which goes into depth about the various endocrine therapy studies...

    Good luck.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited April 2013

    pooh612 and VR,

    I feel for you during the long, long wait, with no definite target date for any information.

    It was the same for those of us who were HER2 positive and who had completed the authorized treatments for bc and sat through the announcement that the Herceptin trials showed positive results. Three months went by with no info for us. By the time 6 months had gone by with not even the courtesy of any public recognition by oncologists that we were in limbo, the annoucement was even worse -- they felt that those who were less than 6 months out from completion of treatment should be eligible for the drug. By the time we were a year out, their recommendation was that those who were less than a year out would be eligible... etc. etc. Sometimes they just don't have it together.

    In your situation, the results aren't in yet, and it is terribly frustrating to not even be able to have those yet. VR has given you good advice, difficult though it is not to know yet what the recommendations are.

    A.A.

  • PoohBear-61
    PoohBear-61 Member Posts: 74
    edited April 2013

    Thank-you voraciousre.....

    The time you put into responding to everyone in incredible and highly appreciated .....You are a wealth of information. Ill try to sit tight untill i get my oncotype test back .

    i am still mad that my oncologist told me that it wasnt worth it for me to order it when i asked about it a month ago.Ill let you know what my score is when it comes back .

    Have a good week everyone

  • Sherryc
    Sherryc Member Posts: 4,503
    edited April 2013

    pooh I take 5,000 daily

  • Sherryc
    Sherryc Member Posts: 4,503
    edited April 2013

    VR you are a wealth of info thanks for explaining the trials.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2013

    AA....every time I think of you I recall how the Herceptin trial unfolded and left you and the other sisters high and dry....If it is some small comfort to you,  I will NEVER forget what happened and will keep it in mind as other trials unfold and see how researchers and clinicians come up with a demarcation for whom to treat......

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited April 2013

    Thanks, VR. In the first year there were only 2 or 3 oncs nationwide who publicly acknowledged that we even existed. I was so completely shocked by such universal silence, especially as humans who had just finished putting up with the recommended months of treatments that were so difficult. For us the experience was a lot more difficult than taking a few pills while waiting it out in the name of trust.

    A.A.

  • [Deleted User]
    [Deleted User] Member Posts: 1
    edited April 2013

    I didn't know about this. It is awful they did this to you ladies. I am sad and shocked. I am sorry you had to go through that.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited April 2013

    Thanks, Fluffy9. Many of us from that period of time found oncs who were willing to provide "late" trastuzumab off-label to us. My onc advised against doing it "late" and I did follow his advice. I have not recurred. Most others who received "late" trastuzumab tend to believe they benefitted even though there is no proof that is true. At the same time.... because the original trials were done with chemo, there was/is no evidence one way or the other about which early stage patients might do just fine with trastuzumab alone, and that has resulted in very stale ongoing medical practice for early stage HER2 positive bc patients, with traztuzumab now having been handcuffed to chemo for over 10 years. Very wasteful and damaging, if in actual fact the chemo is not necessary for most early stage patients. But so far there is no way to know.  It reminds me of the medical mantra and the odd way in which "do no harm...." has come to be interpreted in favor of doing therapy that is not based on solid evidence for the need for damaging treatments. I personally hope that someday instead some women will have the choice of doing at least OA plus trastuzumab rather than chemo plus traztuzumab -- especially since the majority of bc patients are HR+. But I appreciate your understanding and sympathy.

    A.A.

  • kiwikid
    kiwikid Member Posts: 64
    edited May 2013

    Pooh, my MO told me that the trials which compared oa to tamoxifen vs tamoxifen alone were done on older pre menopausal women, and since I'm 34 there's no evidence to say what's best, so he's going out on a limb because I had regular periods through chemo.



    I'm. Not sure if its the tamox or the zoladex. But I can't stop crying. It's bad for me and my relationships and my work. I'm a miserable basket case and I want something to stop. To choose between this miserable existence and a small potential of mets, and a better happier me but the higher potential of mets is heartbreaking.



    Xx kk

  • Annicemd
    Annicemd Member Posts: 292
    edited May 2013

    Oh kiwikid I feel for you, I think that may be the zol. I became very emotional for a very short time after my first shot but very quickly that settled spontaneously, I think my body just adjusted. How long since you started? Hoping you will feel better and adjust to it soon

  • Belinda977
    Belinda977 Member Posts: 150
    edited May 2013

    My MO didn't even discuss OA.  So praying the Tamoxifen does the the trick.  I am 45 so my estrongen should start declining soon on it's own.  

    FYI, I take Celexa for the moodiness.  It really helps.  I am more myself. And it is approved with Tamoxifen.  Exercise is a must too.  

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited May 2013

    This may be a bit of a radical point of view.... but am I just more of a thinker than most people, or when did the role of the physician change so that patients are not advised what their options truly are along with being given the physician's own recommendation among those options? Are they THAT worried that we won't choose the "right" option?

    Very legitimately there are patients who are opposed to the requirement of extensive chemotherapy and all the support drugs and labs, etc. I'm not saying that alternative appeals to everyone, I'm just saying that when choosing therapy, all the possible choices are not being openly provided. Quite likely many if not most patients would choose what a doctor considers to be the one that is considered to offer the best rate of success. Why bother to create the impression that the patient has any choice among therapies?

    What is so terribly wrong with the physician giving the patient all options, along with whatever the professional evaluation of the risk is for each one? I was never told about OA by any physician at the time of choice either. Yet at the time I was diagnosed and specifically asked, one study had shown that OA plus tamoxifen was equal to CAFx6 (the current chemo used at that time) followed by tamoxifen. Since then the taxanes have been more commonly used than CAFx6, so OA plus tamoxifen may not be equal to using a taxane. However, the lack of open disclosure that OA plus tamoxifen actually has been shown to be equal to one form of chemotherapy that is still sometimes prescribed is rather deceptive in influencing patients about treatments.

  • Cuetang
    Cuetang Member Posts: 173
    edited May 2013

    Thanks kiwikid for sharing your experience. I'm 33 and will be meeting with the oncologist tomorrow about my treatment plan. So now I'm a bit nervous after reading about your SEs!



    For those of you that are ovarian suppression + tamoxifen veterans, are you taking any other meds to deal with SEs?

  • wildrumara
    wildrumara Member Posts: 109
    edited May 2013

    I brought up OS to my oncologist.  I remember she mentioned it earlier in my diagonosis but then never brought it up again.......I don't think she was going to.......??? 

    As far as SEs, I am on Lupron and Tamoxifen and I have very minor SEs.  Mainly stiff joints and some minor hot flashes, but those are even going away.  Sometimes I worry because I don't have major SEs!!  

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited May 2013

    cuetang  The SE's I've experienced while on Tami and Zoladex combination - hot flashes (especially at night) and minor joint achiness.  I don't take anything for SE's, but feel that exercise including lots of cardio and stretching, supplements and a relatively clean diet contribute to lessening the SE's that I do have.  That being said, I'm 51 and on the cusp on menopause anyway.  Maybe the OS/Tami regiment is tougher on younger women?   

    kiwikid  Hugs and hope that you're feeling better really soon.    

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited May 2013

    I was on Lupron for a year and had great results (I'm Stage IV) but SE were so bad I had to go off Lupron. I still won't consider taking my ovaries out. Some docs have said ovaries do a lot more for the body than supply estrogen; exactly what all they do is not entirely known. Taking them out may reduce total estrogen but could harm me in other ways. Plus, other body parts supply estrogen too. It's possible that ooph could stimulate estrogen production in other areas such as by adrenal glands. I can't understand why I'm still such a powerhouse of estrogen at 49. It was VERY weird to return from ovarian suppression. I basically went thru adolescence, saw my flat hips and face become round (again), and my Sahara desert girly parts become the Fertile Crescent.

  • Annicemd
    Annicemd Member Posts: 292
    edited May 2013

    Hi Michelle thanks for sharing this with us. Glad you had great results with Lupron. It's also very interesting to hear what happened when you stopped, as many of us on this thread have gone for ovarian suppression and are waiting for the SOFT trial results. If that study shows that long term ovarian suppression is not needed there are a few of us who may go back to being premenopausal again -if like you our ovaries are still feeling lively! I like your description of the changes you noticed :)

  • Sherryc
    Sherryc Member Posts: 4,503
    edited May 2013

    Michelle, LOL I love your descriptions

    My MO never discussed OS.  I was 48 at diag and my estrogen was starting to decline but I was not in menopause.  I am now going through menopause and will be 51 in June.  Wonder how long it will take.  My MO checks my hormones at every visit.  One time they are very low and the next time they are high.  I had my uterus removed years ago so I have no idea what kind of cycle I am in other than the hormone checks.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited May 2013

    I was the same as Sherry C, with ovaries in but uterus removed (except the cervix), and I was 51 at dx but very pre and not perimenopausal. Six sessions of CAF followed by rads did not change my sensuality, sexuality, or lubrication. Two weeks of tamoxifen did -- permanently. I'm not trying to say that is at all common with the use of tamoxifen. I'm just saying that was what happened for me.

    What is never clearly answered is this question: Is one's risk for return of bc higher for those who are able to ever again obtain a level of QOL for sensuality and sexuality after treatment? Must one sacrifice that QOL of sensuality and sexuality in exchange for adequate protection from the return of bc?

    Many others are surprised that I've forgone some key treatments for bc and yet I have not recurred. It puzzles me too. I just wonder whether anyone can have both adequate protection AND "go back" to having an enjoyable QOL of sensuality and sexuality.

    Does anyone know of any studies done in our behalf to provide better answers to my question?

    ???

  • Sherryc
    Sherryc Member Posts: 4,503
    edited May 2013

    AA I don't know tamoxifen has had the opposite effect on me.  After my hysterectomy I had lots of vaginal dryness.  Once on tamoxifen it caused my libido to increase dramatically and also I have the SE of vaginal discharge which is actually a good thing.  DH wants to know if I can stay on tamoxifen forever, LOL.  I asked my MO and he laughed.

  • Cuetang
    Cuetang Member Posts: 173
    edited May 2013

    Thanks everyone for sharing your experiences. Looks like my MO will start me out on tamoxifen for 2 months, then I'll have my Stage 2 DIEP surgery, then I'll be put in monthly Lupron-Tamoxifen. Lupron for two years then I get off of Lupron/Tamoxifen to try for a kid. Then back to tamoxifen, MO leaning towards 10 years total. The MO doesn't think she will add Zometa to my treatment plan but is open to having a discussion in the future about it. Now I've just got to take that pill...

  • violet_1
    violet_1 Member Posts: 335
    edited May 2013

    AlaskaAngel:  THAT is exactly what *I* am concerned about (I've been following your posts closely Cool): QOL (Quality of Life)! That is precisely WHY I don't want to take the damn Tamoxifen, nor do OS or have a hysterectomy-- unless I really have/need to. I've posted about this on the other similar/early stage BC fab thread...Wink

    I will post more soon about how I met a wonderful man a year ago after my 25+ year marriage crashed (6 years ago/was horrendous/ my H. went off the deep end into mind-blowing addiction after years of sobriety Cry)

    So, I am in a new loving relationship w/ a man that met me last May--a few months BEFORE I found out I had BC. He has been amazing! He's been involved in every aspect of my BC care & stayed in the hospital w/ me until 1:00 a.m. every night when I had my BMX. He also went w/ me to some of my fills & took video...Kiss. I'm beyond blessed & so grateful.

    AND, yes, we have a fabulous sex life! Cool I'm 47 1/2...I am terrified of losing my sex drive (it's already a bit dampened by Lexapro as it is). I know that normal menopause will come for me, (my Mum @ 50-53) but I do NOT want to slam into immediate meno. w/ hormones or surgery. I don't want to deal w/ dryness, low libido/sexual dysfunction, ageing faster, weight gain--blah-blah! I want a good QOL, espec. after all of the surgeries/BMX/tests/pain I've been through & will still go through. Ya know?

    IF I had a higher stage/grade of BC, of course, I'd try some of these things, and I respect all of you who are trooping through. BUT, it seems that the risks/SE's aren't worth exchanging my QOL for.

    Also, I'm concerned about the long term unknown effects of Tamoxifen & OS and the like. I've had aunts w/ uterine cancer & BC. I also have P.A.T. (heart arrhythmia) so I'm not sure if I have some contraindications.

    YET. I do still have a 2nd opinion appoint. May 20th. I could change my mind...who knows! Laughing

    Anyway, I love this thread! Annicemd, you share a wealth of info & insight, as do other Super-Researchers on here. I'd love to hear thoughts on my post...and my guess is that most of us also follow the OTHER Stage 1 & 2/early BC thread on here. I don't want to double post, so you can read how I FEEL about my BC over there Wink. I'm going to go catch up on the rest of this thread, as I only got to AlaskaAngel.

    Blesings to ALL of US!

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited May 2013

    Violet_1, I feel exactly the same way you do -- "terrified" -- of losing my sex drive. I have a damn good sex life -- now -- but the year of OS with Lupron was not so good. Each month got worse and worse, as I thought my private parts could not get any drier. What's the point of living if sex is painful, your lover's touch doesn't ring your bell, or simply, if you don't want to be touched? Not to mention hair loss, pain from treatment, hot flashes, insomnia. It's cruel how the treatment, not the cancer but the treatment, hurts our femininity. Maybe I'll die sooner with my choices but I will die with a contented smile on my face. ;-D

  • violet_1
    violet_1 Member Posts: 335
    edited May 2013

    Tarhee: Yes. Yes. Yes.

    BTW, YOU are the 1st stage IV woman on here where I went and looked at your profile/story/posts--scary how fast you went to stage IV...and how you seem to be trooping on w/ such grace...I was thinking about you all day yesterday...Smile

  • Annicemd
    Annicemd Member Posts: 292
    edited May 2013

    There is no question that sex drive is affected by menopause, whether it's OA or OS. Historically it's not something that breast cancer specialists have paid much attention to as the focus of the overwhelming majority of breast cancer research has been focused towards improving survival. As a hormone specialist I see the other side and in my medical practice i have tried to help many women who have become menopausal after chemox for BC. There is an emerging group of women with early stage breast cancer who are offered various treatments that can cause significant impairment in quality of life and the risk/benefit ratio between survival and quality of life impairment is extremely unclear and probably much finer that in more advanced stages of the disease.

    I hear you all, I am there too and I notice every symptom and side effect of OS because it is my job to do so! But there are no answers at present. More quality of life research is needed and as VR has shared with us, we need to look at doing medical research in a totally different way to get the right treatment for individuals rather than using general principles for large heterogeneous groups. Medicine is going in the right direction but BC specialists need to get wise to these issues that are affecting more and more women as survival improves

  • PoohBear-61
    PoohBear-61 Member Posts: 74
    edited May 2013

    Annice

    If someone were to stop zoladex after a year or a few months for whatever reason ...would there be a surge of estrogen that could overstimulate things and cause you more problems down the road ......

    Might be a silly question but i had read something to that effect somewhere?

  • Annicemd
    Annicemd Member Posts: 292
    edited May 2013

    Pooh, not a silly question. Estrogen would increase after stopping zol but tamoxifen is protective as it selectively blocks effects of estrogen and ER positive women would generally also be on tamox. In fact estrogen levels measure very very high on tamox alone without zoladex

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