AI after oophorectomy

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nikola
nikola Member Posts: 466

Hello,

I am trying to decide if I should start Femara after oophorectomy. According to Adjuvant online there is no added benefits. Any thoughts?

Comments

  • karen1956
    karen1956 Member Posts: 6,503
    edited May 2011

    I started on AI's 3 weeks post chemo....had a shot of Lupron and couple months later had an ooph.....took AI's for 3 1/2 years....I'm now 5 years from Dx.....According to my onc, the AI's had a strong benefit fro me......

  • Linda_Lee
    Linda_Lee Member Posts: 11
    edited May 2011

    I have the same question.  My oncologist says there are no extra benefits and we are going to keep doing what we are doing but I am interested in what others have to say.

  • cd1234
    cd1234 Member Posts: 169
    edited May 2011

    I was also very hesitant to take Femara after my Ooph. and I felt so great being drug free. I told my onc how I felt and she said she completely understood. She told me that I really needed to think hard about my decision because if it does come back, I would beat myself up because I did not take Femara. I looked at her and said I would do ANYTHING to prevent it coming back, and she said well I think you just made up your mind. I started taking Femara a few days later and have had very minimal side effects. A couple weeks later my dear friend that I met in chemo (who was Stage 2 also) was diagnosed stage 4. I can't say that Femara will stop that from ever happening to me, but at least I know I am doing everything I possibly can.

    Good luck with your decision.

    Take care, 

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited May 2011

    What is difference between Femara and Arimidex?   My onc still wants me on Arimidex even though I have had ooph and am 46.

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited May 2011

    I am with you Fearless - I had ooperectomy prior to my DX. My onc insists that I need to be on AI.  He has me on Arimidex.  He told me that my body is still producing Estrogen and I need to block it.

  • nikola
    nikola Member Posts: 466
    edited May 2011

    Anybody had double mastectomy? From what I understand after oophorectomy small amount of estrogen is still produced through fat and adrenal glands. In post-menopausal women estrogen is produced via enzyme aromatase in peripheral tissues of body with breast being the biggest (adipose or fat tissue of breast). Since I had mastectomy I do not have that.

  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited May 2011

    I had a double mastectomy, an oophorectomy, AND am taking Arimidex. If there are any cancer cells left in my body, I'm gonna starve those suckers!

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited May 2011

    Nikola, had BLMX and hyster/ooph and onc still wants me on the Arimidex.   

    What is diff between Femara and Arimidex?

  • nikola
    nikola Member Posts: 466
    edited May 2011

    Fearless one, Femara, Arimidex and Aromasin are aromatose inhibitors. I think is preference with which one you are going to start. My onc told me Femara would be the least expensive one on my health plan so I went with it. He told me if I could not manage SE he would put me on Arimidex to see if I can handle better that drug. A frined of mine who was diagnosed 4 years ago was 2 years on Femara and after lots of joint pain her onc switched her to Arimidex.

  • nikola
    nikola Member Posts: 466
    edited May 2011
  • nikola
    nikola Member Posts: 466
    edited May 2011

    I would like to do everything to keep the cancer away. I am only confused as on Adjuvant online there was no added benefits with AI after oophorectomy. If you choose ovarian ablation you get certain benefits. If you add hormonal therapy to ovarian ablation no added benefits. I am seeing my onc on Tuesday and would ask him.

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited May 2011

    Celtic - I am with you - I am starving any of those little suckers still floating around!!!

  • revkat
    revkat Member Posts: 763
    edited May 2011

    I have been interested in the question of how much an AI or tamoxifen adds to ovarian ablation if you have pre-menopausal bc. There was one study presented at the San Antonio meeting last year showing that tamoxifen doesn't add anything. I also ran across a study that showed that an AI did add to the risk reduction, but I can't find it right now. My onco and I have gone around on this -- but she's holding to the party line that for node-positive bc 2 years of an AI sometime in your hormonal treatment is important -- no matter how much Tamoxifen you've been on or whether or not you have had ovarian ablation. And much that I've read seems to agree with her, I've just been trying to find tha data behind the guidelines. It seems that those of us who have pre-menopausal bc and then are put into chemopause or have ovaries taken out are such a small subgroup that there isn't a lot of data on just us.

  • karen1956
    karen1956 Member Posts: 6,503
    edited May 2011

    Nikola....bilat, chemo, rads, ooph and AI's (for 3 1/2 years then stopped due to side effects)...I think the benefit of any of the Tx is dependent on stage, type of cancers etc...for me the "blue plate special" as I call it was in order....all available TX.......Femara and Arimidex are similar formulations and Aromasin is steroidable based...all are AI's and only for post menopausal women...tamox is either for pre or post menopausal women

  • LizM
    LizM Member Posts: 963
    edited May 2011

    I had a bi-lateral, chemo, rads, oophorectomy and will be on an AI (Femara) five years in July.  I asked my oncologist if I could stay on longer than five and he said yes so I plan to stay on an AI longer than 5 years.  I'm definately of the mindset to do whatever I can to keep those little buggers from coming back.

  • nikola
    nikola Member Posts: 466
    edited May 2011

    I just saw my onc. He told me after mastectomy, chemo and oohorectomy my risk was around 8%. AI would give me at most 10% as per my onc and exercise and diet 40%. He said there was very small amount of estrogen in my body now and with keeping BMI around 21, 22 it should be almost non-existent. Re: AI he told me it was up to me.Sill not sure what to do. At least if I decide to take Femara and have serious SE I know I can stop it. I feel comfortable with no taking AI at this point.

  • Carmelle
    Carmelle Member Posts: 388
    edited May 2011

    had ooph at 38, arimidex 5 years...clinical trial for past two taking either femara or placebo.

    I have recently developed heart issue at 46 but have been clear of breast cancer since 2003 so I don't know what I should have done.

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited September 2011

    Bump....same thing here - Adjuvantonline showed no added benes for me taking AI after  my hyster/ooph.  

    ???

  • Jubby
    Jubby Member Posts: 85
    edited June 2013

    I am interested in this topic even though it’s an older one as I am seeing a gynaecologist next week re ovary removal.  My onc has suggested that it would be prudent due to strong family history (even though no BRCA) to have them out.  I am 41 and was still having periods regularly during chemo but they stopped after my second last round.  I am now on Tamoxifen.  I have a friend who had an oophorectomy and she takes Femera (she is BRCA +).  When I asked my onc about Femera, she seemed surprised and said something like “let’s just wait and see how you cope with the oophorectomy before we add anything else into the mix”.  Conflicting treatment approaches are doing my head in.  I want to be sure I throw all guns at BC but also don’t want to be a nervous Nelly and be OTT in my treatment approach.  Does anyone know of any recent studies re AI’s after oophorectomy?  Thanks heaps! 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2013

    Preliminary results of SOFT trial will probably be released in December. Until then, there is no new information.

  • ByFaith
    ByFaith Member Posts: 270
    edited June 2013

    I understand your confusion about oophorectomy and Adjuvant online. I found Adjuvant online to be a rather limited calculation. I didn't see it as any replacement for the very thorough opinion of a highly reputable oncologist who had reviewed my entire medical history and BC dx and treatment ... or even second or third oncology opinions if one is confused.



    I had a lumpectomy, radiation and have been on Femara (briefly) then Arimidex for nearly 3 years. Chemo was deemed to be of very negligible benefit versus risks and was not recommended for me. I thought the AI would be a simple pill to pop for 5 years. Even after I knew of the SE's, I didn't give it much thought at first, as I was so grateful to be ER+ and take something that may help me.



    I've had many annoying side effects (loss in bone density, shoulder tendinitis that took several months to heal, now trigger thumb and, on the opposite arm, elbow bursitis) as well as depression (previous history), fatigue, everyday aches and pains. I have regular discussions with my onc team about whether I need to take it. They're always very supportive either way, but their opinion is the body produces enough estrogen through the adrenals and adipose tissue that, although I have no ovaries, I still produce estrogen. Not to mention all the "synthetic" estrogens in our food supply. Educating myself about those is an ongoing process, as is eating organic and healthy and maintaining my weight.



    I've been told there are no guarantees it's even working for me specifically, but that the statistics are there, and I know I'll always blame myself if I stop and then have a recurrence.



    I believe it's a very individual decision you make after an initial, then multiple ongoing discussions with your oncologist(s). IMHO, Adjuvant online can't replace my oncology team's personal review of my health and their individual recommendation. I wish I could rely on Adjuvant online because I could stop Arimidex now. It's not an easy decision. I wish it was.



    Happy weekend to all my BC sisters.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2013

    Dawn...I'm sorry to hear that you have so many symptoms...We could have been separated at birth!  But I want to step back a moment and say that many of the issues that you and I have are common to women of a certain age whether or not they are on an AI and/or doing ovarian suppression.  Before I began this journey, I had shoulder surgery and elbow surgery.  I also broke my pinky awhile back, but that's another story...Since my diagnosis, I've had shoulder surgery on the other shoulder, broke my 5th metatarsial and I was recently diagnosed with a small tear in my hip tendon with accompaning bursitis.  My friends now refer to me as an "orthopedic expert."  They now come to me with all of their aches and pains.  Some have trigger fingerS (yes, plural), bursitis, tendonitis, all kinds of tears....I guess you get the picture...Some of what we are experiencing is due to wear and tear and being of a certain age and being female.  My darling orthopedist told me not to be surprised if I get a tear in my hip tendon on my other side!  So, while I agree that some of what we are feeling is attributable to ovarian suppression and endocrine therapy, I think we also need to put into context that some of our symptoms may NOT be attributable and then again, some of our symptoms might be exacerbated by o/s and endocrine therapy. 

    Dawn...I wish you well!  I can truly commiserate with you.  There is no right or wrong protocol.  Each of us needs to do what makes us feel better.  Sometimes feeling better means nothing more than doing what we can do to tolerate our pain... and that's what's soooo frustrating.....Thankfully, like you, I have a supportive team of physicians....

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited September 2014

    Bumping.  Just wondering if there are any new thoughts on this topic?  Anyone have a recent conversation with an MO about this?  

  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited September 2014

    hi bayoubabe,

    I just had an ooph last week and am starting arimidex tomorrow.

    I was 46 and pre-menopausal at dx last January. I was ER/PR + 100%.  

    My MO, my primary and my gyno all agree that an AI is important even with ovaries out.

    I want as much estrogen out of my body as possible, that's why I had the ooph.

    Jen

  • Jubby
    Jubby Member Posts: 85
    edited September 2014

    SOFT test results are out....

    http://www.cancer.gov/newscenter/newsfromnci/2014/...

    I am about to start Femera after talking it through with my ONC. 

    11 months after oophorectomy and I am osteopenic (whilst on Tamoxifen) so this is likely to worsen :( but the stats on recurrence make switching from Tamox to an AI worth it for me.

  • Rosiesride
    Rosiesride Member Posts: 513
    edited September 2014

    Jubby...how long were you on tamoxifen?  How was you bone density before you started tamoxifen?  I just started 3 weeks ago and my bone density test was good, but that is my biggest worry about being on tamoxifen as my mom had osteoporosis and I am thin like she was....thanks! 

    I may only be on tamoxifen for a year, as I am 54 but was not in menopause at start of chemo in February...go figure...so to be sure I am in menopause I will start with tamoxifen for a while...since I am 54 I will not get ooph even though I thought about it....and I have been told by all docs that we have estrogen in our bodies ( adrenal glands)....Rosie

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2014

    jubby...those results were the VERY preliminary results.  We are waiting for more results that are expected at this year's San Antonio conference...or early next year's ASCO.  Stay tuned!

  • Jubby
    Jubby Member Posts: 85
    edited September 2014

    Rosie's Ride, I don't know what my bone density was like before Tamox as it was never tested.  I have osteopenia now (only in spine, not hips) and my Mum also has osteopenia but she is 70 (did 5 yrs on Tamox too).  My GP says that there is often a genetic link so who knows...  am I osteopenic from Tamoxifen, menopause or simply my DNA?  
    Either way, I am not a happy camper without my oestrogen.  Emotionally I am OK but I have days when I feel like a withered old lady. 
    Voracious Reader, I will keep an eye out for those results.  I wish we knew them now!!!
    I have a month and a half of Tamox left (need to complete script) before moving to Femara. Think I might need a personal trainer to help me with weight bearing exercise if it's as bad as everyone says for our bones!!

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