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FLLoriK

Angel
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Reply with quote  #1 

Just wondering....I have breast cancer w/mets to the bone and liver. I am chemo induced menopausal. Have tried hormone therapy and chemos. My lastest scans show a growth in my ovaries and "something" in my kidney. Do you recommend the removal of my ovaries?
BTW- I am also an Asheknazi.

nosurrender

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Reply with quote  #2 
Lori, hi, not Nicki here but I am having a similar conversation with my onc right now...
You are ashkenazi, did you ever get tested? I have an unknown variant of BRCA2.

My onc wanted me to keep my ovaries during chemo because he said the estrogen would act like bait for the chemo... but now that I am at the hormonal stage he is not wanting me to get an ooph- he wants me to go on Lupron and do Tamox or something like that instead of an AI.

My GYN is against this idea.

I would be anxious to see what your responses will be to this!

(((hugs)))
Love,
g



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Karen1956

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Reply with quote  #3 
Lori - my onc from the start wanted me to have an ooph.  I was tested and I am NOT BRCA 1 or 2 (I did the multi-site 3 testing as that is where it most likely shows up in Ashenazi Jews - as my insurance wasn't going to pay for testing - geneticist said to start here and if I was negative, no need to do the rest of the testing - the multi-site 3 was quite reasonable to do), but he still wanted them out. He wanted me postmenopausal so I could go on AI's - he feels that the AI's are just a little bit better than Tamox. For me, anything to help prevent another cancer. So as I call it, I had the "blue plate special" -  bilat, chemo, rads, AI's and ooph.  I had a shot (3 month) of Lupron 3 weeks post chemo and started Arimidex at the same time. I also started rads 3 weeks post chemo (I just rushed through all the Tx to just get it over with - no time to think about what I was doing). I needed to heal from chemo and rads before my ooph.  Onc said I could stay on Lupron or do ooph - I had my ooph in October 2006 -  3 months post chemo and 6 weeks post rads.  The surgery was laproscopic and was day surgery. Recovery was not too bad. My original gyn was going to do a TAH because he thought I was BRCA+ (talk about not checking records - don't even get me going here) - when he finally realized he was wrong, I fired him and found a new gyn  10 days before my ooph.  I love the new gyn.  He felt I could go either way with the ooph, but being stage 3, I wanted to do everything I could to beat the odds.  I was perimenopausal prior to BC, so it all just put me over the edge. Chemo had put me in chemopause, so by the time I had my ooph, it had been over 7 months since I had a period.
 
Hugs to you.  Karen
Bren

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Reply with quote  #4 
HI Lori,

I'm glad to see you, but not glad to hear of the problems with your ovaries.  Since I'm not a doctor or nurse, take whatever I say with a grain of salt.

I would think that if you're already in chemopause and there's a problem with your ovaries, why not have them out.  Did the docs do a biopsy of your ovary to see if it's breast cancer or ovarian cancer or maybe neither? What are your docs recommending?

For those gals who are young and have no plans of having children or more children, I would definitely say have your ovaries taken out.  The whole point of AI therapy is to get rid of estrogen and the point of our ovaries is to have eggs to make babies.  (Of course we need that estrogen for lots of other things!) But with AI therapy or Tamoxifen, we're going to be estrogen deprived no matter which way we go.

I wish your new year had started out with better news.  Please keep writing so we know how you're doing.  But if you get busy, I still know how to find you ... I'll track you down to find out how you are!! 

Love,
Bren
FLLoriK

Angel
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Reply with quote  #5 
I am just really scared right now. I wanted the testing for BRAC1 and 2, and wanted the ooph last year but was denied both. I was told I was rushing everything. Could you believe that????
So I am off Xeloda/Avastin for 2/3 months and have been on Arimidex for 2 mos. Markers are going up and scans look like crap. I want action but am told I"M RUSHING!!! what's with that???
So I am now mad AND scared!
FLLoriK

Angel
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Reply with quote  #6 

P.S. I will be more faithful to the board...I promise!

nosurrender

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Reply with quote  #7 
Lori! That is BULL! RUSHING????
What do they want you to wait for?!
Is there anything I can do to help you?
I am very good at contacting AG's offices and getting action.
Where are you being treated? Can you switch?
You are in Florida, correct? are you near MD Anderson??

(((HUGS)))
love,
g


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chemoabi

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Reply with quote  #8 
FLLoriK:  You have to forgive me.  Seems I have become the week-end nurse here cause work is keeping me so darn busy.  Sometimes the only time I have here is on the week-ends.
 
First let me say Im sorry your are dealing with mets.  Damn its so hard.  How anyone could say you are rushing is beyond me.  You are in your armour and ready to fight in any way you can.
 
Im surprised you were not tested for BRCA escecially cause of your background.  Askanashi (spelling) is such a high risk factor.  If not for you, for the rest of your family.
 
Its hard to answer your question about having your ovaries removed because part of me is a nurse and part of me is someone who has breast cancer.  My gut instinct is to take it out - but then the nurse in me worries about putting your body through that trauma.
 
I sure hope you stick around more.  I do read bco and missed you here.  I dont post  much on the mets thread but I do read them all the time.
 
So?  My suggestion is to get yourself to a teaching hospital and get a second opinion from an onc who is current with all the latest treatments.
 
Love
 
Nicki

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Reply with quote  #9 

How to Think about the Benefits of Oophorectomy

Let me clarify some principles for how to think about the risk-reductive benefits of oophorectomy in order to assist in making this difficult and personal decision. Here are the principles:

Just Another Endocrine / Hormonal Therapy
Ovarian ablation - whether it's surgical ablation, that is, oophorectomy, or medical ablation called ovarian suppression which uses LHRH/GnRH agents like goserelin (Zoladex) and leuprolide (Lupron) - should be thought of as just another, the fourth, form of endocrine (hormone) therapy, along with (1) tamoxifen (TAM), (2) aromatase inhibitors (AIs), and (3) the pure antiestrogen fulvestrant (Faslodex), and like all endocrine therapies like TAM, AIs, and FULV (fulvestrant), it reduces the risk of breast cancer, and of its relapse and recurrence for all women who are hormone-response (ER+ or PR+ or both).

Oophorectomy Versus Ovarian Suppression
Oophorectomy induces an irreversible menopausal state compared to the reversible menopausal state induced by ovarian suppression (via Zoladex or Lupron), but both are true and reliable menopausal states (in contrast to the erratic chemotherapy-induced amenorrhea). Both therefore allow, by this reliable induction of menopause, a women to go beyond tamoxifen therapy, and benefit also from AIs or fulvestrant (Faslodex). In addition, oophorectomy has one major advantage over ovarian suppression, in contrast to its potential disadvantage of irreversibility, namely that it also reduces the chance of ovarian (endometrial) cancer. Therefore ovarian suppression is mainly attractive, over oophorectomy, to women to whom fertility preservation is important, while oophorectomy is mainly attractive to women without this concern or who are still premenopausal but are, or consider themselves, past child-bearing years.

Premenopausal versus Postmenopausal
Of the four endocrine (hormonal) therapies, TAM is of benefit to both pre- and postmenopausal women, while AIs, FULV, and ovarian ablation, including oophorectomy, are relevant only to postmenopausal women: neither oophorectomy nor ovarian suppression is of any benefit to a women who is already truly menopausal (but as I noted in my other postings, a women with chemotherapy-induced amenorrhea is not truly and reliably menopausal), since the goal of these endocrine options is to induce a true menopausal state which is always prognostically more favorably than a premenopausal state. It is a fundamental principle of breast cancer therapy that the risk of breast cancer and its recurrence or relapse is always favored (and hence reduced significantly) by rendering a woman truly postmenopausal.

Across the Board Benefits
The evidence strongly demonstrates that the risk-reductive benefits of oophorectomy applies to all hormone-responsive women, regardless of age, stage, and BRCA status: that is, oophorectomy delivers a clear and significant risk-reductive benefit to both BRCA carriers and non-BRCA carriers alike, so it is important to not make the mistake that although oophorectomy is often the standard of care for risk reduction in high risk women including those with BRCA mutations, nonetheless it is of benefit across the board of hormone-responsive women regardless of BRCA status.

Playing the Numbers

    • The real question is what degree of benefit do you get from oophorectomy (or ovarian suppression, which is clinically comparable in benefit)? In the most typical adjuvant setting, at five years the disease-free survival of OO + TAM (oophorectomy added to tamoxifen therapy) for ER+ women is 83% compared to 61% for observation (no therapy) alone, a gain of 22%; at the same five years for ER+ women, the overall survival would be 88% for women on OO + TAM compared to 74% for women on observation alone, a 24% added benefit. The numbers decline a bit at 10 years given the continued residual forward risk of hormone-positive disease, but still significant, and impressive: 10-year DFS stands at 66% for OO + TAM compared to just 47% for observation alone (a 19% benefit), while 10-year OS stands at 82% for OO + TAM compared to 49% for observation alone (a 33% benefit) [data from the in-press pending publication findings of Richard love's team at Ohio State: Survival After Adjuvant Oophorectomy and Tamoxifen in Operable Breast Cancer in Premenopausal Women, to appear in JCO, forthcoming].
    • By comparison, according to t he latest data from the EBCTCG (Early Breast Cancer Trialists’ Collaborative Group, tamoxifen alone reduces the annual breast cancer mortality rate by 31% at 5 years, while ovarian ablation (oophorectomy) or ovarian suppression (via Zoladex or Lupron) alone was statistically as effective, reducing the annual breast cancer mortality rate by 29%.
    • Bottom-line:
      Therefore to take one salient comparison, namely overall survival at 5 years, an ER+ woman can receive:
      • a 31% reduction in the risk of mortality from tamoxifen alone,
      • a 29% reduction in the risk of mortality from either oophorectomy alone or ovarian suppression alone,
      • a 88% reduction in the risk of mortality from TAM + OO, that is from oophorectomy added to tamoxifen therapy.

A Suggestion for FLLoriK
I would strongly agree with the advice you received from others here on this forum, that a second opinion is highly advisable. If it is the case as our moderator states that you're in Florida, there are many excellent candidates, but one of the most attractive in my opinion would be Charles Vogel with the Cancer Research Network and Aptium Oncology at the Lynn Regional Cancer Center West Campus in Boca Raton; besides being a leading clinical investigator and a universally acknowledged exceptional breast cancer expert, I and others consider him one of the foremost authorities in the world on endocrine / hormonal therapy so he would be a particularly fine choice for you as a second consult (and he is a rare humane and compassionate oncologist). His contact information is:

Charles Vogel
Aptium Oncology
Lynn Regional Cancer Center West Campus
Phone: 561-883-7600 (General number at Aptium: 323-966-3400)
Email: drcvogel@aol.com

Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com
Primel

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La Deesse
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Reply with quote  #10 
Constantine, thank you again and again for all this valuable info...

My very best wishes to you for this new year...

Bonne Année et Bonne Santé...
FLLoriK

Angel
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Reply with quote  #11 

Finally had the Brac 1 and 2 testing done. I am thinking of not waiting until the results come back to have the surgery done. The gyn onc thinks I should have my fallopian tubes out also. Any thoughts, ladies?

Karen1956

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Reply with quote  #12 

Lori - I have tubes and ovaries taken out together.  The way the gyn explained it to me they are really one structure.  My surgery was laprocopic and day surgery.  Fatigue was the biggest recovery issue - after a couple days I really wasn't too sore.  Hugs, karen

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