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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: if you take out your ovaries do you need anti-hormonals

Topic: if you take out your ovaries do you need anti-hormonals

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: May 21, 2012 08:11PM

pamelahope wrote:

I am estrogen positive with a blood clotting disorder. I am not a candidate for tamoxifen. I am pre menopausal. My breast surgeon said I would probably end up on Arimedex.
I am concerned reading about the memory loss side effects from Arimedex. Is this true? Ever since my breast cancer diagnosis I have aged my brain like ten years. The shock and anxiety and fear have wrecked me cognitively. I don't think I can handle the side effects of Arimedex.
If I have surgery to remove my ovaries and uterus do I still need hormone blockers????? What cognitive side effects does the surgery cause? Which choice is easier to live with? Are the Arimedex side effects reversible?
Confused! Pam

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May 21, 2012 08:54PM cinnamonsmiles wrote:

My cancer was different than yours so I can not comment on the Arimedex question. I did have my ovaries and tubes removed as well as a total hysterectomy.

There is the possibility of mental confusion with menopause. There was just a big article about it in our local paper.

There is a website,www.hystersisters.com, that is wonderful for information and discussion boards about removing the ovaries, tubes, and uterus. I went there for a lot of information and used the discussion boards. I highly recommend it.

Mastectomy without reconstruction was NOT the worst or only available option. I chose it and am happy with my decision.

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May 21, 2012 08:54PM SpecialK wrote:

There is no way to predict which individuals will have which side effects, and whether or not they are permanent or temporary.  I am sure there are ladies on aromatase inhibitors who have no problems - but they are not likely to be posting here, they are just out living their lives.  You would most likely still need hormonal therapy even with surgery because estrogen is produced in other areas of the body besides uterus/ovaries.  I don't think you can quantify cognitive effects, some women may have them, some may not.  I had a complete hyst/ooph 11 years ago - I did not notice any cognitive decline, nor do I feel I have cognitive issues while taking Femara.  I do have joint aching, but no other significant side effects.  Your diagnosis is so recent that you are still in that state of shock - don't assume that you will stay the way you are feeling right now.  Once you formulate a treatment plan, and start on it, you will feel better - and be better equipped to make decisions that will come a little further down the line, like which hormonal therapy is appropriate for you.

Dx 9/27/2010, DCIS, Grade 3Dx 9/27/2010, IDC, 2cm, Stage IIb, Grade 3, 2/14 nodes, ER+/PR+, HER2+Surgery 11/01/2010 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/06/2010 Lymph Node Removal: Axillary Lymph Node Dissection (Right)Surgery 12/21/2010 Reconstruction (Left)Surgery 01/07/2011 Reconstruction (Left)Surgery 01/21/2011 Reconstruction (Left)Chemotherapy 02/17/2011 carboplatin, TaxotereTargeted Therapy 02/17/2011 HerceptinSurgery 07/20/2011 Reconstruction: Tissue expander placement (Left)Hormonal Therapy 08/01/2011 FemaraSurgery 02/24/2012 Reconstruction: Breast implants (permanent) (Both)Hormonal Therapy 06/20/2012 ArimidexSurgery 12/14/2012 Reconstruction (Both)Hormonal Therapy 07/18/2013 FemaraSurgery 03/07/2014 Reconstruction (Both)Surgery 04/02/2014 Reconstruction: Breast implants (permanent) (Left)
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May 21, 2012 11:29PM Blessings2011 wrote:

pamelahope - I tried to convince my MO that I didn't need Arimidex because I was 14 years post-menopausal, and had a complete hysterectomy in 1998.

Did me no good. She told me that estrogen is still manufactured in the adrenal glands, and - how rude - in body fat. Undecided

That's why I'm on Optifast now....have lost 35 pounds and plan on losing 35 more. I'll be starting Arimidex in the fall. 

Right now, after BMX, my risk of recurrence is 1% - 2%. Arimidex will reduce that by another 50%. Add in diet and exercise, and I'll have a further 23% risk reduction.

There are plenty of threads here about AI side effects....just as there are posts from women who have little or no side effects. I'm REALLLLY hoping I'm one of them!

Dx 9/15/2011, IDC, <1cm, Stage Ia, Grade 2, 0/3 nodes, ER+/PR+, HER2-Surgery 12/05/2011 Mastectomy (Both); Lymph Node Removal (Left); Reconstruction: Tissue expander placement (Both)Surgery 08/22/2012 Reconstruction: Breast implants (permanent) (Both)Hormonal Therapy 09/05/2012 ArimidexHormonal Therapy 10/22/2013 Femara
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May 21, 2012 11:49PM weety wrote:

Yep, even with oopherectomy you will still need an AI if you are estrogen positive.  Ovaries aren't the only place estrogen is produced--just the main source.  After menopause  the adrenal gland takes over and produces estrogen, as do the fat cells in your body, as someone above mentioned.  I had the ooph and am now on femara.  41 yrs old.

Dx 7/17/2009, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR-, HER2+Targeted Therapy HerceptinHormonal Therapy FemaraSurgery Mastectomy (Left)Radiation Therapy ExternalChemotherapy carboplatin, TaxotereSurgery 04/19/2010 Prophylactic Ovary Removal (Both)Surgery 04/10/2013 Prophylactic Mastectomy (Right)
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May 22, 2012 12:01AM lago wrote:

pamelahope I'm on an ESD (estrogen sucking drug) called Anastrozole (generic Arimidex). I have some stiffness from it but not enough to stop me from doing my 30 lunges, 60 squats etc. as well as my treadmill/elliptical or power walking. Yes I do exercise 45-90 minutes daily.

No memory brain issues. I do take Acetyl-L-Carnitine though. I started taking to prevent neuropathy when on chemo. It's also a memory booster. I swear it works. My memory got better on chemo I assume from taking this so I kept on taking it.

Once you have your ovaries out you can't put them back. Have you discussed suppressing your ovaries with Luprin so you can do one of the ESD? You can always quit if you can't handle the SE. I was very scared of the SE after reading some of the posts one this board. I'm finding that I'm not the only one who has few issues. I might get a warm sweat once a month, if that.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010

Dx 7/13/2010, IDC, 5cm, Stage IIb, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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May 22, 2012 03:04AM aussieched wrote:

I was premenopausal and had an oophorectomy, however I still needed to have anti-hormonal.  I am now in my 5th year of Femara.  Boy the hot flushes have been terrible, particulary in the first 2-3 years, had them about every 5 to 10 minutes apart all day, and they were even bad at night.  I still do get them fairly regularly each day, however not near as bad as in the first few years after oophorectomy.  Probably now caused by the Femara.

Yes I would have to say I have had pretty bad memory loss, particularly with names of people, places etc., however saying that, I have and still do to continue working full time in a pretty demanding job.  Not sure if the memory blanks are from the surgery and medication, or also from the stress of fighting this disease and all of the twists and turns and treatments/tests I have had during this time.

Ched

Dx 5/11/2007, IDC, 2cm, Stage IIa, Grade 1, 1/30 nodes, ER+/PR+, HER2-Surgery 05/30/2007 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Ovary Removal (Both)
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May 22, 2012 03:21AM Katarina wrote:

My Psychiatrist had me buy the book "Your Brain After Chemo" because I was having such trouble with Neurocognitive issues since my treatment started, loss of all estrogen and being on Arimidex. It was interesting to note in this book they did a study of how many people would opt out of AI's if the side effects were really bad and the answer was near 70% opting for "quality of life, over quantity". Wow, that shocked me.

Arimidex did me in and now I have to find another therapy. I too was hoping for the answer you seek about ooph/hysterectomy but my Onc also said it wouldn't provide same estrogen blocker. I can go with Tamoxifen, Aromisin or Femara starting back this week. Wow, enee meene minee moe. Which one is easier to live with.

If they're not going to cure BC, the least they can do is come up with treatments we can live with. My rant, sorry.

I'm ready to take fish oil, vitamin d and magnesium. I've read they help with any SE's....if you are even an unlucky one to get them....which you may not be.

Someone was right when they said the people that come to these boards are having issues.

I hope my next AI will be smooth sailing for me.

Hugs 

Dx 1/25/2011, ILC, 6cm+, Stage IIIc, Grade 3, 11/13 nodes, ER+/PR+, HER2-
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May 22, 2012 05:24AM aussieched wrote:

Katarina,  Sorry to tell you but I have been taking the fish oil, vitamin d, caltrate (calcium) and magnesium for the last 5 years and it doesn't seemed to  have helped me with all of my side affects from the oophorectomy and Femara.  I am at the point now that I can hardly walk any more.  I drag myself off to work, but am in so much pain, particularly with my feet and lower back.  I have continual pain in my back when i try and walk, also had 9 months of vertigo last year/strapped my arms and wrists for 6 months so that I could keep typing at work.  I ended up taking 2 breaks from the femara, the second break was for 7 weeks and it helped to clear the vertigo.  It seems that when I finally get over 1 symptom, another starts.

As bad as it has been, I am determined to keep on the treatment.  The 5 years will be up at the end of this year, and as bad as it is, I will be trying to convince my onc to extend the treatment for longer if my bones hold up.

At the time of diagnoses, my bone density was very very good, with the onc saying I had the bones of a 20 year old (I was 52), unfortunately with each bone density very 18 months since, my density is plummeting every time.

Saying that though, I know of one lady who is taking the Femara and has done so for over 2 years, and she has not side affects what so ever, however she is close to 70 years old.  It seems different AI's affect everyone different, so what might make my life misery, might be be totally OK for you.

Ched

Dx 5/11/2007, IDC, 2cm, Stage IIa, Grade 1, 1/30 nodes, ER+/PR+, HER2-Surgery 05/30/2007 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Ovary Removal (Both)
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May 22, 2012 07:29AM GODISGOOD2012 wrote:

I had my ovaries removed 4/30/12 after my 2/13/12 bmx. A cyst was found on my left ovary 4 weeks after my bmx.  With a 99% ER+ and 98%+PR, it just made since to get rid of them, which in turn also got rid of my stress of what they were producing and could the cancer find its way to them. It was my choice and I do not regret it.  I am 3 weeks post-op of the ooph.. and I also take Tamoxifen.  The hot flashes have increased somewhat but they are not unbearable.  My MO wants me to stay on the Tamoxifen for at least 2 years before considering switching to an AI. As far as cognitive ability, I do not feel as if I have lost any. The only thing I am having trouble with is remembering and keeping track of what I need to.  I was told that was probably from having 3 surgeries in 3 months and the emotional trauma of the biopsies and dx of BC.  So I am following the MO recommendations and I am just trying to heal and accepting it will take time to recover from the trauma and surgeries. No regrets, I am just truly thankful everything was found and removed.   

Sandi

Dx 2/8/2012, IDC, 2cm, Stage Ia, Grade 3, 0/13 nodes, ER+/PR+, HER2-Surgery 02/13/2012 Mastectomy (Both)Hormonal Therapy 03/15/2012 TamoxifenSurgery 04/09/2012 Reconstruction: Tissue expander placement (Both)Surgery 04/30/2012 Prophylactic Ovary Removal (Both)
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May 22, 2012 12:01PM peggy_j wrote:

Your MO should be able to tell you the expected "benefit" of any Tx so you can make an informed decision of what's right for you.  I was told that removing my ovaries would reduce my risk of recurrence by 40%.  I can't speak to AIs, but I heard that taking tamox would reduce the risk of recurrence, generally by 40% but it depends on how ER+ you are. I'm highly ER+ (>95%) so my MO said my "benefit" should be closer to 50%. So you can do the math and see whether the benefits are "worth it" to you. 

As my surgeon said, with drugs you can always try them and then see how the SEs are for you. (obviously tamox isn't an option, but if you're considering an AI) I'm not an expert on AIs but I believe many of the SEs are short-term.  If you experience bone loss, I'm not sure you can reverse that, but you could stop taking it and the extra bone loss should stop.

Dx 2/2011, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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May 22, 2012 05:49PM, edited May 22, 2012 05:56PM by vacationbound

I'm going in Thursday for my Hysterectomy/Oopherectomy as the Tamoxifen failed after 3 1/2 months (tore up my Uterine lining and made me bleed daily) then they tried Lupron which also failed (a 3 month dose and I still had periods) so now I am off to the Surgeon and out they come! I am at war with my hormones! But I think the stress of just going through the fight has caused me to redirect my thoughts which results in neglect of some other thought processing skills. Channeling our energies is what causes (for me) my memory loss, if we can focus for awhile on life without cancer then maybe it (the memory) will repair itself....I started Arimidex May 1st, I have daily headaches-my plan is to not take it for very long as after the surgery, I will drop the excess tissue fat, then have my hormone levels checked to start a baseline number then from there check every 6 months or so, the closer I get to lowering my hormones, the quicker I can come off the Arimidex.BTW-they said I would also have to start a Bisphosphonate which I did extensive research on this as well and I will not be taking that either. You can read about it on the Inspire dot com website, the title of the thread is Strontium versus Bisphosphonates under the Advanced Breast Cancer Forum.... my two cents worth.

8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2, 11/19 Pos nodes; 1 Adriamycin-allergic,no more chemo; 32 Rad's; Tamo&Lupron failed, Hyster May 2012, Arimidex june-aug,Sept 2012, small mets L1/L4,May 2013 5mm tumor on left lobe of liver

Dx 8/8/2011, IDC, 5cm, Stage IIIc, Grade 2, 11/19 nodes, mets, ER+/PR+, HER2-
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May 22, 2012 06:29PM pamelahope wrote:

Vacation bound,
You bring up a good point. I wonder if they check estrogen levels before hormone blockers and surgery??? Or is it just assumed if you have an er positive tumor your body is producing too much estrogen. Pam

BRACA2 Positive

Dx 5/16/2012, IDC, 5cm, Stage IIb, Grade 2, 1/14 nodes, ER+/PR+, HER2-Radiation Therapy ExternalChemotherapy 05/26/2012 Adriamycin, Cytoxan, TaxolSurgery 09/24/2012 Mastectomy (Both)Radiation Therapy 11/05/2012 ExternalHormonal Therapy 01/09/2013 FemaraHormonal Therapy 04/07/2014 Arimidex
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May 31, 2012 10:54PM fujiimama wrote:

I am having an oompherectomy and hysterectomy in July. I had an allergic reaction to tami. I'm barely Triple positive E=1%, P=1%, Her 2=2% only on one test. My MO thought just taking out the ovaries would be enough. But it seemed to be based on my % levels.

:-) fujiimama ....a bit of a conundrum...pet/ct/tumor markers clean....but one heck of a bone met...T11 obliterated

Dx 4/20/2011, IDC, 3cm, Stage IIIb, Grade 3, 2/16 nodes, ER+/PR+, HER2+Dx 4/20/2011, DCIS, 6cm+, Stage IIIb, Grade 3, 2/16 nodes, ER+/PR+, HER2+Dx 6/4/2012, Stage IV, Grade 3, mets, ER-/PR-, HER2+Targeted Therapy 05/12/2011 HerceptinChemotherapy 05/12/2011 carboplatin, TaxotereSurgery 09/22/2011 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left)Radiation Therapy 11/26/2011 3-D conformal external beam radiationRadiation Therapy 07/18/2012 3-D conformal external beam radiationTargeted Therapy 09/12/2012 HerceptinTargeted Therapy 09/12/2012 Perjeta
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Jun 8, 2012 02:50PM vacationbound wrote:

Yes maam! It is assumed because you are ER/PR pos status then they rush to give you the drugs-why not! It's a multi billion dollar industry! Testing will not be done unless you specifically push for it!

8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2, 11/19 Pos nodes; 1 Adriamycin-allergic,no more chemo; 32 Rad's; Tamo&Lupron failed, Hyster May 2012, Arimidex june-aug,Sept 2012, small mets L1/L4,May 2013 5mm tumor on left lobe of liver

Dx 8/8/2011, IDC, 5cm, Stage IIIc, Grade 2, 11/19 nodes, mets, ER+/PR+, HER2-
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Jun 8, 2012 04:16PM pamelahope wrote:

What tests should we ask for? Do the tests show whether surgery is enough? I would love the option!!!!! Did you go that route.
Obviously, I don't want a reoccurrence but I do want a quality of life. I am wondering if surgery Plus drugs is overkill.
Pam

BRACA2 Positive

Dx 5/16/2012, IDC, 5cm, Stage IIb, Grade 2, 1/14 nodes, ER+/PR+, HER2-Radiation Therapy ExternalChemotherapy 05/26/2012 Adriamycin, Cytoxan, TaxolSurgery 09/24/2012 Mastectomy (Both)Radiation Therapy 11/05/2012 ExternalHormonal Therapy 01/09/2013 FemaraHormonal Therapy 04/07/2014 Arimidex
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Jun 8, 2012 08:11PM, edited Jun 8, 2012 08:12PM by rgiuff

Pam, taking out the ovaries is probably the most drastic of choices, especially if you are premenopausal.  That sudden loss of your 3 important hormones could really be rough on your body, and also, unlike taking a medication, it's irreversible. And if the side effects of that are hard to deal with, you can't get any hormone replacement.   You could try lupron or zoladex to temporarily suppress your ovaries and then take arimidex.  Then, when you are done with this protocol, you'll still have your ovaries, which produce natural hormones, even after menopause, that are beneficial to many parts of our bodies.  And unless you are having uterine issues, there is no reason to remove your uterus.

Good luck with whatever you decide and let us know what happens.

RoseG

Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-Surgery 05/20/2008 Lumpectomy (Left)Radiation Therapy 08/20/2008 ExternalHormonal Therapy 11/19/2008 Tamoxifen
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Jun 8, 2012 08:27PM pamelahope wrote:

Rgiuff,
Thank you for being my checks and balances! You have a good point about the beneficial hormones after menopause.
Right now I am 45 and premenopausal. I think chemo will push me over the edge into menopause. I can't take tamoxifen because of a blood clotting disorder. I heard Arimedex being thrown around. I guess it can't hurt to try and see how I react. I am also waiting for my braac test results.
Pam

BRACA2 Positive

Dx 5/16/2012, IDC, 5cm, Stage IIb, Grade 2, 1/14 nodes, ER+/PR+, HER2-Radiation Therapy ExternalChemotherapy 05/26/2012 Adriamycin, Cytoxan, TaxolSurgery 09/24/2012 Mastectomy (Both)Radiation Therapy 11/05/2012 ExternalHormonal Therapy 01/09/2013 FemaraHormonal Therapy 04/07/2014 Arimidex
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Jun 8, 2012 11:19PM Blessings2011 wrote:

Fifteen years ago, I started perimenopause when I was 47 (pre-BC). Had hot flashes, night sweats, and short-term memory loss. Saw a doc who said it was stress and wanted to put me on Prozac....Surprised Politely declined.....

I said I'd rather try hormone-replacement therapy. I did, and it worked like a charm. Unfortunately, I also had fibroids the size of boulders, and the pain and bleeding finally convinced me to have a complete hysterectomy (LAVH).

I was offered the choice of leaving the ovaries in, but all I could think of was that if they were gone, that was one more type of cancer I wouldn't get.

The surgeon also told me that women who'd had the uterus removed, but left the ovaries in, would probably hit menopause earlier than other women who had not had surgery. (Can't quote any studies on this, but that's what I was told.)

I took birth control pills for almost 30 years, and HRT for another ten years. I look back and think that probably wasn't the smartest thing for me to do, but that's life.

Believe it or not, there ARE women who have few or no side effects from the aromatase inhibitors. I have been arguing with my MO for months that I don't want to take the Anastrozole (generic Arimidex) but finally I promised her I would at least try. I always have the option of quitting if I DO get serious side effects.

Dx 9/15/2011, IDC, <1cm, Stage Ia, Grade 2, 0/3 nodes, ER+/PR+, HER2-Surgery 12/05/2011 Mastectomy (Both); Lymph Node Removal (Left); Reconstruction: Tissue expander placement (Both)Surgery 08/22/2012 Reconstruction: Breast implants (permanent) (Both)Hormonal Therapy 09/05/2012 ArimidexHormonal Therapy 10/22/2013 Femara
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Jun 13, 2012 11:59AM, edited Jun 13, 2012 12:01PM by Shachar

I will be having an oophorectomy soon (hopefully very soon) and this question has also been crossing my mind. I am thin with little body fat to convert aremotase to estrogen so it would make sense to have my estrogen levels checked at regular intervals before diving into taking an AI.   I hope my onc agrees, but we will see.  Smile
Dx 4/23/2012, IDC, 6cm+, Stage IIIc, Grade 1, ER+/PR+, HER2-
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Jun 13, 2012 12:44PM, edited Jun 13, 2012 12:46PM by AlaskaAngel

IF we had one master control over the medical system that constantly analyzed each of our situations and what things about them are the same and what things about them are different and how to offer the best answers for each one of us.... IF we did that...

Instead of putting surgeons and radiologists and oncologists in charge of deciding what to offer us, the master control would have had the intelligence to find a way to put specialists that are in charge of metabolism and endocrinology first in line to talk to us and test us and make sense out of our differences and similarities.

As well-intended as it may be, and as unintentional as it may be, making generalized statements without indicating one's general age range really keeps these issues more confused. Someone who is still in their 40's is going to have different body capabilities for the most part than someone who is in their 30's or their 50's or their 60's, hormonally speaking and just generally physiologically speaking.

With chemotherapy, one's level of such hormones as testosterone don't just drop a little, they plummet, and replacement is less with aging. And testosterone is what helps to build and maintain muscle tissue. But doctors who don't have expertise in metabolism and endocrinology and with expertise in other methods of treatment are not very likely to provide us with a thorough analysis of our metabolic and endocrine changes due to the very treatments they offer.

We truly, truly need to change the power structure of the medical system to be more responsive to our metabolic and endocrinologic problems. It would make more sense if we were to have someone like an endocrinologist trained not just in diabetes or thyroid problems, but specifically in cancer management as well, who would have the authority to see us prior to treatment of any kind, to see us as we are prior to treatment, to explain to us what our individual characteristics indicate and how they change with treatment, and to provide the leadership and guidance for the other specialists to be able to offer genuine answers to the kinds of questions you are all asking.

In short, we NEED that kind of specialist to be authorized to be a full member of our tumor boards, with full authority to speak to before-and-after issues about our medical care.

AlaskaAngel

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jun 13, 2012 12:54PM pamelahope wrote:

Well said! Brilliant! Pam

BRACA2 Positive

Dx 5/16/2012, IDC, 5cm, Stage IIb, Grade 2, 1/14 nodes, ER+/PR+, HER2-Radiation Therapy ExternalChemotherapy 05/26/2012 Adriamycin, Cytoxan, TaxolSurgery 09/24/2012 Mastectomy (Both)Radiation Therapy 11/05/2012 ExternalHormonal Therapy 01/09/2013 FemaraHormonal Therapy 04/07/2014 Arimidex
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Jun 13, 2012 12:56PM Shachar wrote:

Amen to that.   We all have so many variables to consider, general health status, metabolism rates, past medical history, family history, etc.  To have one pill with one dose without adequate follow up testing for hormone levels just alludes me in the common sense department.  I want to do everything I can for my best prognosis, but it would be nice to have us all not lumped into one category and treatment pattern just for the sake of streamlined statistics.  In a way, this places us all in the position of becoming our own best advocates, researchers, and experts.  Individualized treatment would seem to raise statistics and ensure we get all of what we truly need and none of what we dont.  I find it odd that not once has anyone drawn blood to check my hormone levels, or even suggested it.  I am going to.  What if a smaller dose worked for smaller people, or a larger dose for those it isn't working as well on?  One size does not fit all.  Smile
Dx 4/23/2012, IDC, 6cm+, Stage IIIc, Grade 1, ER+/PR+, HER2-
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Jun 13, 2012 01:05PM AlaskaAngel wrote:

It will be interesting to see if the trials for the use of metformin as a helpful medication for cancer treatment actually end up being very thorougly analyzed from a metabolic and endocrinologic standpoint, including separating it all out by age range.

As I understand it, it was a Canadian female doctor who first realized that patients who were taking metformin (due to diabetes) were responding better to the common cancer treatments. Thus, the first trial for the use of it for breast cancer began in 2009 in Canada. The USA is following that lead at present. We don't know how the trials will turn out yet.  I wonder how much sooner it might have been noticed and considered if cancer patients had already been routinely reviewed metabolically and endocrinologically as part of the tumor board process?  What other possibilities for more targeted and less toxic metabolic or endocrinologic treatments are going undone now because we are lumped together in such confusion without much regard to age and metabolic/endocrinologic status?

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jun 14, 2012 10:24AM melly1462 wrote:

Glad I found this thread.  I had my last chemo yesterday (YAY!) so my MO brought up the next step: Tamoxifen.  I had expressed my reluctancy earlier because of my high risk of blood clots.  She is now hesitant about the Tamox and is suggesting having my ovaries removed so I can take an AI.  I'm not real keen on that either.  Like you ladies have said, ovary removal is permanent.  What happens to our bodies when that natural hormone estrogen is not being produced???

I worry about that.  Once the ovaries are out and we're done with the AI, will our bodies begin to produce estrogen again?  Even in small doses?  The chemo has already pretty much de-sexualized me.  I feel no ovaries plus AI's will shove me right over into a total asexual being complete with depression and mood swings and general unhappiness. 

Pre BC I was an active, healthy (sexual and otherwise), more happy than sad woman.  Now??  We won't go there. 

Sorry for the rant.  I'm sitting here putting off calling my gyno like my MO insisted so we can get the next step in treatment started.  UGH!!!!

Lumpectomy 1/13/12. 5 day radiation with SAVI. TCH x6, Herceptin til Feb. 2013. Considering declining Tamoxifen, looking for alternatives.

Dx 11/29/2011, IDC, 2cm, Stage IIa, Grade 3, 0/1 nodes, ER+/PR-, HER2+Surgery 09/18/2012 Prophylactic Ovary Removal (Right)
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Jun 14, 2012 07:13PM rgiuff wrote:

Melly, you don't have to have your ovaries removed.  Why do something permanent and irreversible if you don't feel good about it and if you don't have to.  You can have them temporarily suppressed with medication that turns them off for awhile. Then when the medication is stopped, if they are going to recover from the chemo at any point, they could eventually start working again.  See my post to Pam a little higher up on this page.  Even in menopause, our bodies still do make estrogen however, but nowhere near the amount the ovaries made.  The adrenal glands and fat cells make estrogen from androgens with the help of the aromotase enzyme.  With the AIs, the aromotase enzyme is blocked from doing its job.  So that little bit of estrogen that we have postmenopause is stopped too.

I really miss being premenopausal with my hormones fully working, so I hear you Melly, regarding the side effects on sex life!

I am taking aromasin because I am naturally postmenopausal, but don't really feel that I need to after 3 years of tamoxifen, because I have made healthy improvements in my lifestyle that I feel are just as important if not more so than these drugs.  If I start having side effects that make me feel worse, I don't intend to suffer.  It's been 2 weeks almost, and so far, waiting to see how things go.

RoseG

Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-Surgery 05/20/2008 Lumpectomy (Left)Radiation Therapy 08/20/2008 ExternalHormonal Therapy 11/19/2008 Tamoxifen
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Jun 14, 2012 07:55PM, edited Jun 14, 2012 07:56PM by AlaskaAngel

Studies that lump together all those taking tamoxifen and then tally up how well (or not) they did at "x", "y" or "z" number of years later may be causing more women to take tamoxifen that either isn't benefitting them as individuals or else benefitted them without them needing to take it for as long of a time as they actually took it.

Breast density appears to be an indicator of those who benefit:

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/902

On a personal basis --

I had a mammogram after completing chemotherapy and rads and my breasts still clearly appeared to be very dense at age 52 (and I still had a very active and enjoyable sex life).  I started tamoxifen, and within 2 weeks my sex life was over and never returned, along with having vaginal atrophy, dry eyes, dry ears, dry skin, etc. with the loss of the lubrication that one has with more estrogen. At 3 months I had another mammogram, and the breast density had completely disappeared.

I suspect that may have indicated that I didn't need any more tamoxifen, although I continued to take a full dose for the rest of that year, and then a half dose for another 3/4 years before quitting it. I've never had a recurrence of bc, for what that is worth.

I think they should do a trial to monitor breast density for those on tamoxifen, and use breast density to tell when the medication has achieved a significant reduction in breast density, instead of keeping premenopausal women on it for years and years.

A.A.

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jun 14, 2012 08:25PM, edited Jun 14, 2012 08:27PM by vacationbound

The drugs or surgery...the hormone levels are: Estradiol (E2), Estrone (E1), Estriol (E1) Progesterene (pg)

Have you checked into Lupron shots lately? With insurance co-pay are $300-400.00 a month! What happens if you lose your job...$1600.00...cannot afford them anymore....the shots are drawn and not pre-measured therefore you may fall short a unit or two...you can still get pregnant while on the shot as you are not in menopause.....neither are you in menopause during chemo.....it's called medically suppressed meno-big difference. I am 3 weeks out post total hysterectomy (we took Uterus as Gyno/Onc said more chance at getting uterine cancer) laproscopic procedure...was up grocery shopping the next day...no pain at all, feel like having sex already but I will wait until my post-surgery appt June 19th. Our bodies go through depleted estrogen and natural menopause so I would rather have my body do this for me then some medication like Lupron and Arimidex as the side effects are horrible (to say the least) go hang out on a stage IV panel and you will soon learn and if those SE's are not enough for you, add in the Bisphosphonate they will add to the mix to give you even more SE's like bone fractures and in the end, you still get recurrence. I feel great after having my hysterectomy, I was in hospital overnight and on the Inspire breast cancer forum, I have had many stage IV women tell me they wished they would have done this as they felt it would have slowed the recurrence.

8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2, 11/19 Pos nodes; 1 Adriamycin-allergic,no more chemo; 32 Rad's; Tamo&Lupron failed, Hyster May 2012, Arimidex june-aug,Sept 2012, small mets L1/L4,May 2013 5mm tumor on left lobe of liver

Dx 8/8/2011, IDC, 5cm, Stage IIIc, Grade 2, 11/19 nodes, mets, ER+/PR+, HER2-
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Jun 14, 2012 08:41PM dogsandjogs wrote:

So true Shachar: I am 76 and posted this question on another thread. Why don't the AIs come in different strengths? I can't possibly have the same amount of estrogen as a 60 year old. The onc had no answer to my question. I had to quit the drug due to very severe SE.s I also want to discuss my bone issues. My internist is not that interested despite the fact that I have lost 60 percent of my bones from osteoporosis. What specialist do I see for osteoporosis and who do I see to have my estrogen levels checked?

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodesDx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+Surgery 11/17/1982 Mastectomy (Right); Lymph Node Removal (Right); Reconstruction: Breast implants (permanent), Nipple reconstruction (Right)Surgery 02/11/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jun 15, 2012 01:29AM, edited Jun 15, 2012 01:31AM by AlaskaAngel

dogsandjogs,

I've yet to find a surgeon, a radiologist, or an oncologist who comprehends or could answer that kind of question.  They don't seem to have the background training to understand the mechanics or principles of female metabolism and female endocrinology. They just prescribe the treatments and medications that change our metabolism and our endocrine levels.

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jul 10, 2012 06:48PM renedawn wrote:

I have been on Arimedex for over 2 yrs. now after having both breasts removed.  I think what you have been reading is true regarding mem. loss.  I am 55 yrs. old and have noticed that I can't remember things as well and thought it might be dementia or Altzheimers.  I just kept doing research on the computer and found this site.  It made me feel better that I am not the only person with this problem.

I will continue to search but with my Ins. Co. I am limited with choices of care.

Keep up research and ask lots of questions.  Dr.'s don't always know everything there is to know.

Good luck to you.