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All TopicsForum: Stage III Breast Cancer → Topic: Estrogen Blockers ??? Take it or don't take it ?????

Topic: Estrogen Blockers ??? Take it or don't take it ?????

Forum: Stage III Breast Cancer — You are not alone. Meet others who have Stage III breast cancer.

Posted on: Oct 28, 2010 09:25AM - edited Aug 20, 2013 06:02AM by kathysvx

kathysvx wrote:

I'm looking for women who have dicided not to take the estrogen blocking pills!!!! I need some input . My Dr. is telling me that I really don't have a choice, that I must take it. I have all the side effects that you can have and I can not deal with some of them. I really would like some info on how it has or hasn't effected other women !!!!! I just don't know what to do. Do I take the pills and be miserable for the rest of my life or do I just say no and feel a little more normal ??? HOW IMPORTANT ARE THESE LITTLE PILLS ?????????????????????????????

Stage IIIA (pT2,N2aM0) Invasive ductal Dx 5/8/2009, IDC, 2cm, Stage IIIA, Grade 2, 5/30 nodes, ER+/PR+, HER2-
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Posts 151 - 170 (170 total)

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Apr 9, 2018 03:06AM Luckynumber47 wrote:

I often feel that we're doing a real disservice to the newbies with all our frank talk about the POSSIBLE side effects of tamoxifen and the AIs. I know I was scared to death to take the first one - certain my life would be over from that one little pill. But you know what? Nothing happened. Knock on wood, 2 years later, I am still side effect free. I'm the same age as you, wonderingcancersurvivor, and you won't believe the things I've done in those 2 years. I painted the outside of my house, knocked down interior walls, remodeled a kitchen and 2 bathrooms, did several big landscaping projects and right now I'm in the middle of ripping up basement carpet and sanding off all the old glue. I refuse to let a little pill stop me. It didn't make me old, it made me determined!

What is it about this little pill that makes us so afraid? Dr says we need chemo - ok, if you say so. They say we need radiation. Well, I guess I can do that too. But that little pill leaves us quaking in our boots. Is it because we take it ourselves or that it's just the last straw in the whole scary bunch of treatments?

Everything has side side effects. I went into anaphylactic shock from over the counter Aleve, had horrible hives from prednisone and can't have garlic without hours of misery. We just need to be aware of possible side effects and discuss any issues we have with our MO so that we can take the best possible care of our own health. If one has debilitating side effects, then by all means, stop taking them. Quality of life is important. But don't just assume those issues without at least trying.

wonderingcancersurvivor, you asked about whether the pills help prevent a recurrance or a metastasis and the answer is yes. They are systemic treatments - in case any undetected cells escaped these drugs keep them from getting fuel to grow. My dr called it my insurance policy and I happily take it every day so I can thumb my nose at this horrible disease.

The unexamined life is not worth living. (Socrates) My avatar is a Blue Footed Boobie. Cracked me up. Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/6/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Apr 9, 2018 03:24AM Meow13 wrote:

I asked my oncologist how will we know if the anastrozole is working. He said there is nothing we can do or check to know it is working. It all about probabilities. I am a firm believer in questioning and becoming informed for yourself and not just take everything the doctor tells you. Use them as your expert advisors collect your information and you make a decision.

It is ok to be "afraid", or as I see it as cautious. I, for instance, said no to chemo after it was recommended from a high oncodx score. The numbers for benefit were unimpressive to me. I did however decide to take anastrozole and then exemestane. I still have lasting effects from the drugs after being off for 2 years. But I made the choice and don't regret it.

It is important to know all the possible side effects from any drug you take.

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Apr 10, 2018 07:45PM Simbobby wrote:

Thank you all for your experiences and perspectives.

I am joining this thread as I was just prescribed letrozole by my Onc. I had a double mastectomy on 3/29 and my pathology report was not what we'd hoped for.

I'm a little surprised that this was prescribed already as I have not yet had my Radiation treatments and I thought hormone therapy was the last treatment after chemo, surgery and radiation.

Didn't think to ask about it at appointment time.

Going to keep following and learning.


Dx 9/15/2017, IDC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2+ Chemotherapy 10/9/2017 AC + T (Taxol) Surgery 3/29/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right Dx 4/3/2018, Right, 24/26 nodes
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Apr 11, 2018 02:26PM - edited Apr 12, 2018 10:57AM by sbelizabeth

Luckynumber47, I was nodding in agreement when I read your post. You go, girl.

I have swallowed my letrozole pill every single night for close to six years. That first pill had me wondering when the thundercrack would hit and I would fall over into a joint-screaming, fatigue-flattened, flaming lady-bits, heap. Nothing happened. Nothing dire has EVER happened, at least nothing that exercise and some lovely lubricant couldn't turn around.

When I emerged from the treatment churn in 2012, if my oncologist had said "just walk around at the mall naked each day, it will significantly reduce your chances of breast cancer recurring," I would have flung off my clothes and grabbed a shopping bag. Yeah, it sucks that I take a pill each day that increases the risk of bone loss and other issues, but there it is. I HAD BREAST CANCER. That sucked too. It was serious. It was bad. I'll take my pill to increase the chances I'll be around for my granddaughter's wedding.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Apr 11, 2018 05:30PM muska wrote:

sbelizabeth, well said!Happy

Simbobby, I started anastrozole before radiation. Didn’t want to stay another month without protection and wit stage 3 diagnosis.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
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Apr 12, 2018 02:36PM DancingElizabeth wrote:

Agree - the annoying joint pain, sour moods and hot flashes - are MUCH better than the alternative. Give me all of that and more - if it helps prevent an early death....

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/17/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/7/2016 Hormonal Therapy 11/8/2016
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Apr 12, 2018 04:49PM Simbobby wrote:

Thank you Musial,

That makes sense as I don't start my rads until May 1 so they likely wanted a treatment in place in the interim.

Elizabeth- this is what I hope to learn here. Are these side effects simply an annoyance which is likely manageable, or are they intolerable to the point that you never have a good day or something in between.


Dx 9/15/2017, IDC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2+ Chemotherapy 10/9/2017 AC + T (Taxol) Surgery 3/29/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right Dx 4/3/2018, Right, 24/26 nodes
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Apr 12, 2018 06:51PM DancingElizabeth wrote:

Simbobby - I'd have to say they're annoying. But, not that bad! One thing - I didn't mention - is that it makes me feel like I'm doing something - to help prevent Stage IV. And, that's a good feeling. Exercise - helps a lot - too!!

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/17/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/7/2016 Hormonal Therapy 11/8/2016
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Apr 13, 2018 05:01PM NotVeryBrave wrote:

Some people truly have no problems with these medications. Some have the bothersome "annoyance" variety. Some are quite miserable and suffer a poor QOL. And others finally quit.

You never know which group you'll fall into unless you try.


TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 15, 2018 02:52PM Hopeful82014 wrote:

Simbobby - experiences with the AIs vary so much! I've found that with a couple of modest exceptions the side effects came after I'd been using Femara for over a year. I was given one 3-week break (which didn't do much, frankly) and then switched to Aromasin, which was even worse. When I went back to Femara a) things settled down (a lot) and b) I found a couple new tools for substantially reducing joint pain. Mostly at this point they are an annoyance and NOT something I think about or am aware of every day.

I'm not crazy about the overall effect of eliminating estrogen from my body and would walk away from that aspect in a New York minute if I thought I could safely do so. But I can't and I won't.

I think the big thing is to go into treatment with an open mind and to go with the flow - change medications if needed, experiment with ways of minimizing whatever side effects crop up and keep your MO in the loop as to what you experience.

Finally, exercise is vital; it helps keep your joints moving, improves mood, and allows you to feel smugly superior to those who don't exercise (just kidding... ).

PS - I did take Femara during radiation. My RO said there are arguments for both sides but since I was already on it and doing well it seemed safer not to stop for the 7 weeks. I was fine with that!

Dx IDC
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Apr 15, 2018 04:28PM pupmom wrote:

I could hardly wait to take Exemestane. If I read about SEs on here, it did not register. My fear/terror was cancer. Anything that would help me LIVE I was much more than willing to do.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Apr 16, 2018 04:45AM Traveltext wrote:

I've been happily taking my 20mg tamox pill without side effects for coming up four years now. However, I had a stroke recently which was caused by a blood clot in the brain. Fortunately I've made a full recovery, but knowing blood clots are a big SE of tamox, I'm seriously considering halving the dose. My cardiologist says cut it out all together. So, the option of a slow death with bc mets compared to having a severe stroke that either kills me, or worse, leaves me badly incapacitated is something I'm weighing up. I sort of prefer the former.



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Apr 16, 2018 05:09AM Meow13 wrote:

Travel, sorry to hear about your stroke. That can be very frightening, my Mom had a stroke about a year and a half ago. Scared us all; she was so lucky we got her to the emergency room as soon as we realised she wasn't making any sense. She had a complete recovery. Now she takes eloquist. She never had breast cancer or any other health problems just high cholesterol and elevated blood pressure which are under control with meds.

I did AI drugs for 4 years and I am done. Still have pain and weakness in my right hip joint. I notice it at night. I am not on any meds, my blood pressure, sugar and cholesterol are normal. But those AI drugs really aged me. I sure hope the cancer doesn't come back, it has been 7 years. You never know but I feel so much better now I am off this stuff. This year I'll be 60.

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Apr 16, 2018 05:20AM Traveltext wrote:

Thanks for that meow. Really glad to hear that your mom made a full recovery. The aim is to get medical attention asap. It's a bummer for me to have to consider not taking a drug I have no side effects for. That's why I'm thinking of halving the dose. Sort of like having a bet each way!

Good on you for your seven years NED.



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Apr 16, 2018 08:11AM pupmom wrote:

Travel, can you take an Al? I don't believe they have the same risk of blood clots.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Apr 16, 2018 09:18AM ohio4me wrote:

100% ER/PR positive. Femara didn't work for me, lots of joint pain. Taking Aromasin, hopefully for 10 years. I will take it for life if insurance allows. I love hugging my great nieces and nephews, my belief is Aromasin is fighting the cancer cause I'm 7 years NED. I have hot flashes, but lymphedema is more annoying than hot flashes.

My decision is to stay on meds cuz they are working, or helping. Maybe they only help mental health.

No regrets. I made decisions I could live with.

Just loving life day by day.

Dx 3/29/2011, ILC, 5cm, Stage IIIC, Grade 2, 14/15 nodes, ER+/PR+, HER2- Surgery 7/10/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 8/28/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/22/2012 Surgery 7/22/2012 Prophylactic mastectomy: Left
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Apr 16, 2018 09:24AM - edited Apr 16, 2018 09:25AM by Lula73

Travel- I had blood clots on tamoxifen too. MO discontinued it immediately and I was put on Xarelto for clot prevention and switched to AIs. What do they have you on for clots? Have you tried any of the other AIs?

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal
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Apr 16, 2018 03:12PM Traveltext wrote:

pupmom and Lula, thanks for the replies. Men are generally not prescribed AIs because they don't appear to be as effective as tamox, which is the gold standard for men. My pal Rob did four years on Femara before progressing to mets and he wonders why he was prescribed that drug.

I'm now on a blood thinner, blood pressure lowerer and a statin. Taking these along with the tamox, but will talk more with the medical team before I decide what to do. Decisions, decisions!


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Apr 16, 2018 08:58PM sbelizabeth wrote:

Traveltext, you are a hero. Thanks for representing the masculine side.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Apr 17, 2018 01:43AM - edited Apr 19, 2018 07:46PM by Traveltext


Thanks sbelizabeth, but I don't really have any competition from other male BCpatients on BCO. Perhaps that's why I hang around. Plus, I've learned so much about real heroines over at the IBC Lounge where many people are really doing it very tough.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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