Changing to AI/OS from Tamoxifen after reviewing SOFT study?

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  • VioletKali
    VioletKali Member Posts: 243
    edited May 2015

    I am on OS and AI, I began this w/o using tamoxifen first. I went into chemopause, so I have zero extra side effects from this combo. Effexor has all but completely erradicated my hot flashes flashes.

    I am more tired than usual, but chempause did that too.

  • Jest
    Jest Member Posts: 9
    edited May 2015

    Hi All,

    I am very glad that a kind lady directed me to this thread. I was dx at 37 in 2014, had double-mastec and 4 rounds of chemo from Apr to Jul 14, and started on tamoxifen in Sep 14. I was offered the option to either go for Tam or removal of ovaries. I opted for Tam. Like many of you, i experience hot flashes, night sweats, vaginal dryness etc. My period stopped since May 14.

    In my recent visit to the clinic, Dr advised that recurrence risk is higher in younger women, and asked again if i would be keen to have my ovaries removed. Everytime when i was feeling well and normal, came such advice from the doctor. I am quite tired of it and it seemed that they were hinting at me that the best prevention method is have the ovaries removed.

    I am in a dilemma. I am neither young nor old, 39 this year, but really want to get this stupid disease out of my life completely. So, am seriously comtemplating removing them maybe next year but am worried about the side effects of menopause (sigh). 

  • lala1
    lala1 Member Posts: 1,147
    edited May 2015

    Well, my side effects are some nausea, dizziness and hot flashes, but I was having that before my ovaries were removed thanks to Tamoxifen! I have to say, I don't feel any different between my before and after except that I have alot less bloating from my enlarged uterus and ovarian cysts! (And my hot flashes are every day instead of every other day!)


  • Professor50
    Professor50 Member Posts: 220
    edited May 2015

    Jest, surely you jest! 39 is young. 39 is REALLY YOUNG. REALLY. I think that if I were in your shoes the things I'd be thinking about would be something like, why would a healthy, vibrant, young woman of 38 or 39 develop cancer? At all? That is just a very unlikely event. I imagine that is why your MO is keen on removing your ovaries. Mine brings it up quite a bit (and am neither young nor old, I'm 51) because it would cut off the risk of ovarian cancer. My MO has always been, like, "I can live with cancer in your breasts. We can track it and we can treat it. But cancer in the ovaries, we have no way to screen for it."

  • lauren32
    lauren32 Member Posts: 46
    edited May 2015

    Hi ladies if anyone can help that would be great. Three weeks ago I had my first zoladex injection the three monthly implant. I was in menopause from the chemo I'd finished the week before. Yesterday we re tested my estrogen levels as I'm due to start aromasin and they are back up to 455 !! I find this so frustrating as I'm not sure why the zoladecx is not working? How long after starting the ai did u have the injections? Thx. My oncologist has suggested an oopharectomy so maybe I need to do that soon after rads finish in a few weeks. Maybe that will get the estrogen levels down more. .....

  • Nan54
    Nan54 Member Posts: 93
    edited May 2015

    Professor, while I agree that 38 or 39 is still young, I disagree that it is such an unlikely event for one that age (or even younger) to get breast cancer. It happens, these 'young' women are all over these boards. My oncologist swears that - unless one has a BRCA mutation and/or significant family history - the risk of ovarian cancer is no greater than for the rest of the female population. And all of those women aren't rushing to get their ovaries out! Again, she maintains that there are additional benefits to overall health by keeping those ovaries, even if suppressing them. I might get a second opinion on this topic

  • Professor50
    Professor50 Member Posts: 220
    edited May 2015

    I am clearly not champing at the bit to have my ovaries out, since I still got 'em (at the ripe young age of 51!). :) However, I would just note that breast cancers in women younger than 40 tend to be more aggressive than those diagnosed in older women. And, I think, that they are thought to be biologically different from cancers in older women. I am not advocating ovary removal! I am simply saying that young women (perhaps especially) (and here I mean, "actually young" not "fake young, like me!") face a difficult choice. I mean, giving up estrogen is hard at any age.

  • ingersollnic
    ingersollnic Member Posts: 46
    edited July 2015

    I just turned 43, was diagnosed 2 months ago with ILC LHS and DCIS RHS. I am on chemo and then will have radiotherapy. My oncologist wants to start Zolodex and AI due to the SOFT study. I was referred to a gyn oncologist for 5.5cm cyst, that has totally gone 3 weeks later but he has advised he wants to remove my uterus and ovaries as women with bilateral cancer have an increased risk of other cancers. I am just adjusting to the change from tamoxifen (which my surgeon indicated) to the suppression and AI (which I was not thrilled with) due to the SOFT study but I think I will wait and see how the suppression affects me before taking that step. I am premenopausal and very upset about being put into menopause but I understand the reasoning and will report back with symptoms as that is what I am keen to hear about from others. I want to hear the quality of life issues as doctors are great at the statistics but not so forthcoming with the side effects. The gyn oncologist told me there is more they can do to treat side effects if I get my ovaries and uterus removed but I am not sure about this.


    I will be following this thread to see how other premenopausal women have coped with the suppression (or removal) and AI. It is a great thread.

  • lala1
    lala1 Member Posts: 1,147
    edited July 2015

    I had a TLH/BSO in Jan for Tamoxifen related endometrial issues. I was 51 and barely even perimenopausal but I was very worried about menopause and hot flashes. I am now 6 months out and find I am doing really well. HF were a little strong when they started about a month after surgery. I'd have 4-6 during the day and another 3 or 4 a night that would wake me. None were "drenched in sweat" type but more "film of sweat" type. :) My MO put me on iCool from Walmart and now I have a couple during the day and maybe one at night. And they are much shorter and milder than before. Took about a month for the iCool to kick in but it's working wonders for me.


  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited July 2015

    MY MO is pushing OS +AI. According to her, my cancer is simply feeding off my hormones and she wants to eliminate any and all traces of estrogen from my body, including what is produced by the kidneys. I am 95% ER+ 95% PR positive and my FISH score was through the roof. I haven't made up my mind yet. For now taxol has killed my periods. I have yet to have a hot flash though. What to do what to do...

  • rgiuff
    rgiuff Member Posts: 1,094
    edited July 2015

    Having gone through it naturally,  I am very against  menopause !  The changes it has brought to my body I am finally accepting several years after the whole process started taking place. But I really would prefer to return to being premenopausal,  even with a higher risk of breast cancer recurrence! The achy joints, insomnia, sexual difficulties,  more saggy skin,  have all impacted my quality of life. I feel that nobody should have to go through this any earlier than necessary Especially with the increased risk of other problems that oophorectomy can cause. My Oncologist was very pro tamoxifen only for early stage cancers like mine. And I don't understand these Oncologists who recommend this for early stage women especially.  If you feel uoset at the suggestion, I'd say get another opinion.  Every doctor sees things differently, and chances are you'll find one who is against the idea. Then you'll feel more at peace if you keep your ovaries. 

  • inks
    inks Member Posts: 746
    edited July 2015

    rgiuff- Menopause is not fun. But some of us have higher stakes. I have stage III and grade III and baby that is 3 years old. Heck yes I am foregoing all estrogen and going on an AI.

  • Stephmoen
    Stephmoen Member Posts: 563
    edited July 2015

    I'm there with you inks everyone keeps saying menopause isn't fun yah I understand that but if it's going to help in any way to see my 16 month and 5 year old grow up well it's a sacrifice I'm willing to mak

  • JohnSmith
    JohnSmith Member Posts: 651
    edited August 2015

    For those that made the switch to an AI + OFS, are you also taking Bisphosphonates?
    Bisphosphonates are essentially used for Osteoporosis and can slow down or prevent bone damage due to cancer.
    Bisphosphonates examples include:
    Alendronate (Fosamax)
    Ibandronate (Boniva)
    Risedronate (Actonel or Atelvia)
    Zoledronic Acid (Reclast or Zometa)

    I ask because I stumbled across a 2009 cancer TED Talk presented by Dr. David Agus, Professor of Medicine & Engineering at USC, where he tells the audience about a clinical trial which resulted in a ~36% reduction in breast cancer recurrence for women taking a Bisphosphonate.
    Skip ahead to about ~12:30 minutes into the TED talk video where he discusses the results from a Phase 3 breast cancer clinical trial involving 1800 premenopausal breast cancer patients randomized to receive Zoledronic Acid, which resulted in the ~36% reduction in recurrence.

    That study results he references can be found here.
    The original trial titled "Tamoxifen Versus Anastrozole, Alone or in Combination With Zoledronic Acid, in Premenopausal, Hormone Receptor-positive Breast Cancer Patients (Stage I, II)" can be found here.

    Since this is an older trial, I assume they're have been newer trials that either support or refute this evidence.
    Anyway, for those that made the switch to an AI + OFS, are you also taking a Bisphosphonate like Zoledronic Acid?

  • daisylover
    daisylover Member Posts: 310
    edited August 2015

    Hi John,

    My oncologist started me on Tamoxifen, Lupron, and Zometa right after my BMX in February of 2014. I had an oophorectomy in March of 2015. I then switched from Tamoxifen to Aromasin. I am currently on a 2 week vacation from Femara. I will be trying Arimidex next. Side effect issues... if I have issues with Arimidex, I will go back to Tamoxifen. My oncologist definitely based her recommendations on SOFT.

  • ingersollnic
    ingersollnic Member Posts: 46
    edited August 2015

    Hi John

    The Lancet article does not seem to show a benefit for premenopausal women in their 2014 review

    http://www.thelancet.com/journals/lanonc/article/P...(14)70302-X/abstract



  • readytorock
    readytorock Member Posts: 199
    edited August 2015

    JohnSmith-

    it is not letting me give the correct link. Here is the text of the article:

    Two Classes of Generic Drugs Can Reduce Breast Cancer Deaths

    Two new studies suggest that two different classes of drugs, aromatase inhibitors (AIs) and bisphosphonates, can improve survival for postmenopausal women with early breast cancer (Lancet 2015 July 24. [Epub ahead of print]). Moreover, the researchers suggested that the combination of the two types of drugs increases the benefits while reducing some side effects.Most women are postmenopausal when they develop breast cancer, and breast cancer usually is found early, when surgery can remove all detectable disease, but might leave undetected micrometastases. About 80% of the 1.7 million breast cancers diagnosed each year are estrogen receptor (ER)-positive. Endocrine treatments, which act to stop hormones from stimulating cancer cells, can help protect these women against breast cancer recurrence and improve survival dramatically, the researchers said.

    The two reports from the Early Breast Cancer Trialists Collaborative Group (EBCTCG) provide the best evidence yet for the effects of AIs and bisphosphonates on postmenopausal women with early breast cancer.

    The first meta-analysis reviewed evidence from 30,000 postmenopausal women in nine randomized trials, showing that five years of treatment with newer endocrine therapy, such as an AI, produces somewhat better survival than five years of standard endocrine therapy (tamoxifen). Compared with tamoxifen, taking AIs for five years further reduced the likelihood of the cancer recurring by about one-third (30%), and the risk for death from breast cancer by around 15% throughout the decade after beginning treatment. The researchers estimated that, compared with no endocrine treatment, the risk for death from breast cancer for women who took AIs would be reduced by around 40% in the decade after beginning treatment.

    "Our global collaboration has revealed that the risk of postmenopausal women with the most common form of breast cancer dying of their disease is reduced by 40%, by taking five years of an aromatase inhibitor—a significantly greater protection than that offered by tamoxifen," said Mitch Dowsett, FMedSci, PhD, a professor and head of the Academic Department of Biochemistry and head of the Centre for Molecular Pathology of The Royal Marsden and The Institute of Cancer Research, London. "The impact of aromatase inhibitors is particularly remarkable given how specific these drugs are—removing only the tiny amount of estrogen that remains in the circulation of women after the menopause—and given the extraordinary molecular differences between ER-positive tumors. But AI treatment is not free of side effects, and it's important to ensure that women with significant side effects are supported to try to continue to take treatment and fully benefit from it."

    The second meta-analysis brings together evidence from another 20,000 women in 26 randomized trials, showing that two to five years of treatment with a bisphosphonate, which usually is used to treat osteoporosis, reduces the risk for breast cancer recurring in postmenopausal women, and significantly extends survival. However, bisphosphonate treatment appears to have little effect in premenopausal women.

    Bone is the most common site for breast cancer metastasis, but tumor cells released from the primary breast cancer can remain dormant in the bone for years before metastasizing. Bisphosphonates have profound effects on osteoclasts, altering the bone microenvironment, which could make it less favorable for cancer cells, reducing the risk for metastases. Taken separately, previous clinical trials of bisphosphonates in early breast cancer have shown mixed results, but taking all their results together, a clearer picture emerges, they said.

    The meta-analysis included patient data on 18,766 women in 26 randomized trials, comparing between two and five years of bisphosphonates versus no bisphosphonate. In the overall study population, the only clear benefit of bisphosphonates was a 17% reduction in recurrence of cancer in the bone. However, among postmenopausal women, bisphosphonate treatment produced a larger reduction in bone recurrence of 28% and reduced the risk for death from breast cancer by 18% during the first decade after diagnosis. The absolute reduction in the risk for death from breast cancer at 10 years was 3.3%.

    This benefit was noted regardless of the type of bisphosphonate, treatment duration, tumor size, whether it had metastasized to the lymph nodes or whether it was ER-positive. However, bisphosphonate treatment did not reduce the risk for new breast cancers developing in the opposite breast.

    "Currently, bisphosphonates are used mainly to reduce bone loss and fractures in postmenopausal women and to reduce bone complications in advanced cancer patients," explained Robert Coleman, MBBS, MD, FRCP, a professor of medical oncology and director of the Sheffield Cancer Research Centre and the University of Sheffield in the United Kingdom. "Our results show that adjuvant bisphosphonates in postmenopausal women prevent around a quarter of bone recurrences and one in six of all breast cancer deaths in the first decade of treatment. These simple, well-tolerated treatments should now be considered for routine use in the treatment of early breast cancer in women with either a natural or medically induced menopause to both extend survival and reduce the adverse effects of cancer treatments, such as the aromatase inhibitors, on bone health."

    These studies provide solid evidence that both of these inexpensive, generic drugs can help to reduce breast cancer mortality in postmenopausal women, according to Richard Gray, MA, MSc, a professor at the University of Oxford, who was the lead statistician for both studies. "About two-thirds of all women with breast cancer are postmenopausal with hormone-sensitive tumors, so could potentially benefit from both drugs. The drugs are complementary, because the main side effect of aromatase inhibitors is an increase in bone loss and fractures, while bisphosphonates reduce bone loss and fractures as well as improving survival," he said.

    Established 30 years ago by researchers at the University of Oxford, the EBCTCG is a worldwide collaborative that reviews all the evidence from randomized trials on the treatment of early breast cancer every few years.

    - See more at: http://www.clinicaloncology.com/ViewArticle.aspx?ses=ogst&d=Web+Exclusive&d_id=245&i=July+2015&i_id=1209&a_id=33126#sthash.2CmSfHeJ.dpuf
  • lala1
    lala1 Member Posts: 1,147
    edited August 2015

    Any idea if taking bisphosphonates helps postmenopausal women who are still taking Tamoxifen?

  • ingersollnic
    ingersollnic Member Posts: 46
    edited August 2015

    Hi John

    My oncologist just prescribed exemestane as he said this study which included ILC shows significant percentage points benefit


    http://www.breastcancer.org/research-news/aromasin...



  • ingersollnic
    ingersollnic Member Posts: 46
    edited August 2015

    Some more infor


    http://www.ascopost.com/issues/june-25,-2014/exemestaneovarian-suppression-reduces-recurrence-vs-tamoxifenovarian-suppression-in-premenopausal-breast-cancer.aspx


    Key Findings

    At a median follow-up of 68 months, 5-year disease-free survival was 91.1% with exemestane plus ovarian suppression and 87.3% in the tamoxifen plus ovarian suppression group (P < .001). The 5-year rate of freedom from breast cancer was 92.8% in the exemestane-treated patients compared with 88% in those who received tamoxifen (P < .001).

    Among patients who did not receive chemotherapy and were treated with exemestane and ovarian suppression, 97.6% of the TEXT population and 97.5% of the SOFT population were free of breast cancer at 5 years.

    Distant recurrence comprised about 60% of the events. The 5-year rate of freedom from recurrence at a distant site was 93.8% in the patients assigned to receive exemestane plus ovarian suppression compared with 92% of those treated with tamoxifen plus ovarian suppression.

    The overall survival rates were high in the two groups and not significantly different. At 5 years, overall survival was 95.9% in the exemestane group and 96.9% in the tamoxifen group. However, it is premature to determine survival, Dr. Pagani said.

    Side effects of both drugs were similar to what is reported in postmenopausal women. Adverse events that were more frequent with exemestane included fractures, musculoskeletal symptoms, vaginal dryness, decreased libido, and dyspareunia. Those more frequently reported with tamoxifen included thromboembolic events, hot flushes, night sweats, and urinary incontinence. Adherence was very good in both arms, with only 14% of patients interrupting both treatments before 5 years.

    Gynecologic cancers were reported in seven exemestane-treated patients and in nine tamoxifen recipients. Endometrial cancers occurred in two and five patients, respectively. About 30% of patients in both arms experienced grade 3 or 4 adverse events.

  • 123JustMe
    123JustMe Member Posts: 385
    edited October 2015
  • molliefish
    molliefish Member Posts: 723
    edited October 2015

    This is a very helpful thread as I am just finishing Chemo. My MO is suggesting Tam for 2-5 years, then exemestane or armidex (?) for 5 more. I am post menopause. Anyone have the link to the SOFT study? I tried googling but I'm not sure I got to the right study. THX

  • lawyergirl
    lawyergirl Member Posts: 24
    edited October 2015

    Hi Molliefish -- The SOFT study (http://www.nejm.org/doi/full/10.1056/NEJMoa1412379) appears to be relevant only to pre-menopausal women.

    As an update for others following this topic, after ~6 months of Lupron ovarian supression + Arimidex, I decided to have an oophorectomy because the monthly Lupron shots were literally a pain in the ass. My outpatient laproscopic surgery was on September 25. I was back to work the next day (working from home) and flew across the country on a business trip the following week. Two and a half weeks later, I still have some minor nerve pain near the right incision site when I laugh or sneeze, but it continues to improve. One very unexpected side effect of the surgery has been a significant reduction in hot flashes, which has been great. The hot flashes aren't gone entirely, but I'm only waking up 1-2 times/night now instead of 4-5 times. Ahh!

  • 123JustMe
    123JustMe Member Posts: 385
    edited June 2016
    Molliefish,
    My MO is suggesting the same for me. So far so good.
  • exercise_guru
    exercise_guru Member Posts: 716
    edited October 2015

    I am 42 with bilateral breast Cancer. I also have the PALB2 gene. My oncologist was fine with me having tamoxifen for 10 years but the gynecological oncologist wants to take out my ovaries as soon as I finish Chemotherapy. This would put me on AI. I am torn whether to request Lupron shots for six months so I can better understand the side effects or go straight for the oophrectomy.

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited October 2015

    I am on Lupron...just had my second three month injection (I get a shot every three months, not every month). I tolerate Lupron fine, and I love not having periods. It's the only part of cancer I do like lol. I on tamoxifen and plan to stay on it. Doc was concerned about bone loss on an AI. I have no side effects from tamoxifen. I have no plans to remove my ovaries, I find the shot easy

  • lala1
    lala1 Member Posts: 1,147
    edited October 2015

    You don't have to go on an AI when you have your ovaries removed. I'm staying on Tamoxifen with my MO's blessing because a) I tolerate it pretty well and b) the percentage increase in benefit to me was only about a half percent. I had a full hysterectomy with ovary removal due to some changes from Tamoxifen that concerned my gyn. Glad I did it. I feel great and now don't have to worry about that part of cancer. I am 52 so was heading for menopause anyway although I hadn't had any real symptoms yet. I currently just deal with hot flashes which have become more like warm flushes thanks to my iCool that my MO suggested.

  • rgiuff
    rgiuff Member Posts: 1,094
    edited October 2015

    Exercise guru, if you have any doubts , better to take the more conservative route. Removing ovaries could be life changing and is irreversible A Gyn-Onc is exposed to lots of cancer, so may be more biased towards the aggressive surgical intervention.  Med-Onc opinion should be primary here. 

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