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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Opting out

Topic: Opting out

Forum: Hormonal Therapy - Before, During and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Nov 10, 2017 07:13AM

vampeyes wrote:

Has anyone thought about not taking the hormone pills or anyone that said no to them? The side effects seem worse than breast cancer! Heck one of the drugs can cause uteran cancer. WTH?!

Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left
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Nov 10, 2017 09:11AM Icietla wrote:

Yes, some have refused the Endocrine Therapy recommended for them. For the benefit of other readers who might be misled by your statement there, I want to point out that the worst of the possible side effects are unusual, not nearly universal. As you can find from looking through this Hormonal Therapy section, many are doing very well with Endocrine Therapy.

We already have some other discussion threads for those discussing not having Endocrine Treatment.

https://community.breastcancer.org/forum/78/topics/735051?page=1

https://community.breastcancer.org/forum/121/topics/852086?page=1

Dx 2/12/2016, ILC, Right, 2cm, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal
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Nov 10, 2017 09:39AM ksusan wrote:

There are several threads on BCO where people are discussing this question, and they tend to be supportive of people making a variety of decisions, depending on which forum they're in. People who have trouble with anti-hormonal treatment have a legitimate concern that's well-documented in medical studies, and we need new options with fewer side effects.

At the same time, people are more likely to post when they're having a problem. For example, a reader might think that jaw necrosis was a common side effect of AIs based on the number of posts here, but it's quite unlikely and my MO hasn't encountered it. Similarly, three gynecologists I've seen have never seen a case of Tamoxifen-induced endometrial cancer, but a friend did have it. This doesn't mean that the concern isn't important or the potential consequences aren't awful, but that the likelihood is low. Joint pain is an example of a side effect that's more common and warrants looking into because it can be relatively benign and just a nuisance, or more serious and harmful. The side effects of Tamoxifen and AIs are significant enough that some people stop taking them, but most tolerate them through at least a significant portion of treatment, if not all the way through a 5- or 10-year course. I'm not trying to minimize the side effects--I have several--but to say that some people can manage them and some can't, for a variety of reasons.

The risk of endometrial cancer from Tamoxifen is much lower than the risk of a breast cancer recurrence (metastasis). My perspective is that the side effects of anti-hormonal therapy may be more of a problem in the moment than breast cancer, but I'm less likely to die taking the medication than I am not taking it.

Tamoxifen decreases my recurrence risk more than my chemo or radiation did, so I'll take it as long as I can and do what I'm able about the side effects, including knowing that if it severely decreases my quality of life, I'll try a different solution (such as ovarian suppression and an AI; or quitting if there are no good options). I have fewer side effects from two generics than from the others, and my sister does better on a generic that causes me more side effects. It's worth giving it a try or experimenting.


Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 10, 2017 01:38PM vampeyes wrote:

Thanks ladies, I thought there were but for some reason could not find the threads this am.

Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left
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Nov 10, 2017 03:13PM NotVeryBrave wrote:

Well stated, ksusan! Lots of things play into the decision and what's right for one may not be for another. Unless you have another underlying condition that makes you more of a risk for certain serious SE's - I think it's worth at least trying to take them.


TCHP x 6 rounds - Complete Pathological Response! Still have to finish the year of Herceptin ... Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/19/2016 Perjeta (pertuzumab) 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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Nov 11, 2017 07:19AM dtad wrote:

vampeyes...to answer your question yes there are those of us who have chosen to stop or opt out of anti hormone therapy. As others have said there are threads on this forum that address the issue. There are also threads that address doing well on anti hormone therapy. I would check out both. We all have to make our own informed treatment decisions. We all have different circumstances that will affect our decision process. I'm one who refused them from the start. However I'm not advocating that for everyone. Good luck to all navigating this complicated disease.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 13, 2017 02:03PM CidneyI wrote:

I stopped taking estrogen suppressing meds after trying for 2 1/2 years. I couldn't function and think straight when at work. I also found myself taking one med after another to combat all the side effects. I finally said no more. Now that I am off all meds and that took awhile, my body has kicked into high gear in natural menopause. I swear, I feel like I am on the meds again. I cant think straight, I feel like I am going nuts. The hot flashes are just as intense along with other body and mind changes. I feel like am now on nature taking its course with me and my estrogen is suppressed or a lot less producing than it use to me.

Dx 9/11/2014, DCIS, 2cm, Stage IIA, 0/5 nodes, PR- Surgery 9/12/2014 Lumpectomy: Right Surgery 9/19/2014 Lymph node removal: Right, Sentinel Radiation Therapy 9/25/2014 3DCRT: Breast Hormonal Therapy 10/24/2014
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Nov 14, 2017 07:29AM tgtg wrote:

Vampeyes--

Like dtad, I am one who "just said no" to anti-hormonals. I declined them from the start for a number of reasons, including my aversion to/skepticism about "messing with Mother Nature" and her hormones. The more specific reasons for me and my specific case included my age (71 in 2012), my favorable tumor stats (below), and the inherent long-term risk to my long-term good health posed by either anti-hormonal option, including DVT, clots, stroke, osteopororis, and uterine cancer. Now, just a few weeks shy of the 5-year mark, I am cancer-free and glad I declined. But this was my decision for my situation--as are all decisions made by anyone with a cancer diagnosis. Good luck to you as you make yours.

71 at diagnosis, Oncotype #, 12 Dx 12/21/2012, IDC, Right, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 1/6/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/17/2013 Whole-breast: Breast
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Nov 14, 2017 07:35AM - edited Nov 14, 2017 07:35AM by dtad

Vampeyes.....congratulations on being NED for 5 years! It just proves we all have to make our own informed decisions. Good luck to all navigating this complicated disease.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 14, 2017 07:37AM pupmom wrote:

I can't resist responding. Sometimes "Mother Nature" decides to kill us. Should we then just let nature take its course? It is very easy for early stage, no nodes involved, to trust Mother Nature. For others, not so much. Just saying.

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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Nov 14, 2017 08:28AM Peregrinelady wrote:

Age is a huge factor in this decision, as well. If I was diagnosed in my 70's, I would be more concerned about the risk factors that tgtg mentioned. At my age (55), I just want to make it to my 70's!
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Nov 15, 2017 07:06AM dtad wrote:

I agree age is a factor. As well as other individual circumstances. It not an easy decision. Good luck to all navigating this complicated disease.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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