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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 11:13PM

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 11/15/2017 Lumpectomy: Left
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Nov 11, 2017 01:11AM 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 11, 2017 01:39AM 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 11, 2017 05:38AM 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 11/15/2017 Lumpectomy: Left
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Nov 11, 2017 07:13AM 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 11:19PM 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 14, 2017 06:03AM 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 9/11/2014 Lumpectomy: Right Surgery 9/18/2014 Lymph node removal: Right, Sentinel Radiation Therapy 9/24/2014 3DCRT: Breast Hormonal Therapy 10/23/2014
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Nov 14, 2017 11:29PM 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 11:35PM - edited Nov 14, 2017 11:35PM 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 11:37PM 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 15, 2017 12:28AM 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 11:06PM 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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Dec 8, 2017 01:59PM swg wrote:

I just had my unilateral mastectomy a little over a week ago and have decided already to opt out.

I'm stage 1, no nodes. I guess I get why people who already have a low risk of recurrence want to lower it even further..if, as in my case, it would probably only be from an 8 pct risk to a 4 pct risk. But that's not me. I'd rather have less really good years in good health than way more years dealing with side effects.

And I guarantee I'd be one of the ones to get SEs as I always do. SEs and allergic reactions.

I'd rather do my homework on everything else that cuts my recurrence--like, for ex, eating 5 or more fruits or veggies per day and exercising for 30 minutes 6 times a week (this was shown in an actual study to lower risk of recurrence by 20 pct or more), even if it is more work than letting an oncologist convince me to pop a pill.

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement Hormonal Therapy
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Dec 9, 2017 01:54AM Peetie1 wrote:

SWG,

Have you read the studies on taking baby aspirin? It also lowers your risk of breast cancer by 20%, and provides the added benefit of reducing the risk of colon cancer and heart disease. I am told that it is possible to have a GI bleed, but I think the risk of that SE is so low compared to the SEs found in Tamoxifin or an AI.

I have also read the studies that you site. Some studies give the reduction in recurrence related to vigorous exercise for 60 minutes 5 times a week at 40%. I have opted for this, as well as a vegetarian diet. These are not easy changes, but for me quality of life is very important!

Dx 3/5/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 5/23/2017 Whole-breast: Breast Surgery Lumpectomy: Left
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Dec 9, 2017 04:39AM Hopeful82014 wrote:

SWG - Your last paragraph seems to imply that you think those who "pop a pill" are looking for an easy fix, rather than doing the hard work of maintaining a very healthy lifestyle. That may not be how you meant it but it reads as a slap in the face to every woman who was active, healthy and health conscious and still diagnosed with cancer or a recurrence.

The hard fact of the matter is that for some women vigorous, consistent exercise and the right dietary pattern will be sufficient. However, for many it's not - nor is there any way of telling which group one will fall into. You're welcome to follow whatever path you choose but please don't imply that those who take AIs or tamoxifen are slackers.

Peetie - re: baby aspirin: if you're going to do that please be sure your PCP and/or MO are aware of it. Baby aspirin does have many benefits but, like any drug, it's not entirely benign. Should you develop issues while you're using it diagnosis will be much easier if your providers are aware that you're taking it. Since it's such a common drug many people do not remember to list it among their medications.

And about GI bleeds - they happen a lot more often than you would think and they are frequently life-threatening, even for the young and healthy. The consequences can be substantial. Please use caution!


Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-
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Dec 9, 2017 05:43AM KB870 wrote:

I must admit I was very reluctant to post here because of the reception some folks get when opting out. After discussions with my MO and now my PCP I have decided I don't want to take the AIs. I feel that this is the right decision for ME PERSONALLY only. I am very relieved to have made it too. I am posting this for completeness now I have completed my Herceptin and this would have been the next line in standard of care.

SWG - I did not read that last paragraph as a criticism of women who do choose to take an AI.

Surgery 9/18/2016 Lumpectomy: Left Dx 10/6/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/30/2016 Lymph node removal: Sentinel Chemotherapy 11/28/2016 Taxol (paclitaxel) Targeted Therapy 11/28/2016 Herceptin (trastuzumab) Radiation Therapy 4/3/2017 Multi-catheter: Breast
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Dec 9, 2017 07:45AM Peetie1 wrote:

Hopeful,

Thank you for the information regarding the Baby Aspirin! I have made my Breast Cancer Team as well as my Primary Care Physician aware that I am taking it, but it is really good advice for anybody who decides to go this rout!

Dx 3/5/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 5/23/2017 Whole-breast: Breast Surgery Lumpectomy: Left
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Dec 9, 2017 07:49AM Michelle_in_cornland wrote:

Well, for all those Tamoxifenites (those who take Tamoxifen), I have always lead a very healthy lifestyle with absolutely no alcohol, smoking, red meat, dairy, mostly vegan, walk at least 5 miles per day. I am using Tamoxifen as "extra insurance" to prevent recurrence. Just did my blood work, which was fabulous and I feel wonderful. So, for those opting out, fine. But for those staying in, I am right here with you.

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Dec 9, 2017 07:52AM Hopeful82014 wrote:

Peetie - I'm glad your whole team is aware of your use of baby aspirin. I hope the aspirin serves you well. (I'd be taking it myself if I could.)

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-
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Dec 10, 2017 12:21AM dtad wrote:

Hi everyone...just not sure why we can't post in the appropriate threads. The title of this one is opting out! We all have to make our own informed decisions about treatment plans.I support and respect all individual choices made. 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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Dec 10, 2017 04:20AM Hopeful82014 wrote:

dtad - The title of this thread is, indeed, "Opting Out" and the OP posted a query rather than a plea for unilateral support for a decision already made. I see nothing inappropriate about discussing the pros and cons, nor the path by which individuals have made their decisions. Women (primarily) reading this thread but perhaps not posting (or reading it via a google search) deserve a robust discussion - in my opinion.

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-
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Dec 10, 2017 05:16AM KB870 wrote:

dtad - this is precisely the reason I was reluctant to post. Our decisions are not accepted and the not so subtle bullying (read quoting of inaccurate stats re SEs) starts up again! I wonder if this post will be reported like the one where I complained about the bullying /scare tactics.

Frankly the Hormonal forum makes me wonder why I bother with this board when the other forums are so supportive whatever the decision made.

Surgery 9/18/2016 Lumpectomy: Left Dx 10/6/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/30/2016 Lymph node removal: Sentinel Chemotherapy 11/28/2016 Taxol (paclitaxel) Targeted Therapy 11/28/2016 Herceptin (trastuzumab) Radiation Therapy 4/3/2017 Multi-catheter: Breast
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Dec 10, 2017 05:31AM pupmom wrote:

I have no problem with people posting that they refuse treatment. Their lives, their choice. But I object to people trying to influence others to follow their no-treatment path, which is very risky. It is especially dangerous for frightened newbies to read these posts.

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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Dec 10, 2017 05:32AM Rosabella wrote:

baby aspirin does nothing for BC. It does for colon cancer to help prevent it.

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Dec 10, 2017 05:35AM - edited Dec 10, 2017 05:40AM by Rosabella

also don't get why there can't be a discussion. Op hasn't decided either way and so is weighing the decision. No one is trying to convince her not to except indirectly perhaps those who are so against it?

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Dec 10, 2017 05:37AM Peregrinelady wrote:

When I was first diagnosed, I was on this board literally 8 hours a day. All I needed to convince me that I would take the anti-hormonals was going back to stage IV posters before they became stage IV and seeing how many of them opted not to take the drugs or quit before 5 years. Yes, I know many did take the drugs and still recurred, but unless you have debilitating side effects or other health reasons, why take the chance? Having seen my twin pass from MBC at age 45, it is frustrating to see new posters say that they won’t even try the drugs based on the negative side effects that some of us have. Yes, there are side effects, but guess what, if you recur, the first drug many go on is Arimidex. I would rather take it now then later. And I do have chronic achiness and neuropathy, but I try to exercise to ameliorate these issues. To each her own, but please remember that your decisions now will affect your family later.
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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Dec 10, 2017 05:58AM Hopeful82014 wrote:

Rosabella - I've seen evidence both ways re: baby aspirin and breast cancer and thus wouldn't take it just for breast cancer recurrence prevention. As you pointed out it does really seem to help prevent colon cancer and seems to protect from cardiac issues. But there are (as with most anything) downsides, too. Peetie's smart to have given her medical team a heads up on her use of it.

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-
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Dec 10, 2017 09:33AM Peetie1 wrote:

Hi Rosabella,

Please know that I am not advocating any particular medical treatment for you, but here is a link to one study. If you google the low dose aspirin/breast cancer there are many more that will come up for you. My Mo told me that the link between aspirin and breast cancer is still being studied, so they were not yet telling all of their patients to take it, but the preliminary studies look good. That is why money has been put into further research, and she was not against me taking it.

https://www.medicalnewstoday.com/articles/317248.php

Dx 3/5/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 5/23/2017 Whole-breast: Breast Surgery Lumpectomy: Left
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Dec 10, 2017 01:23PM Rosabella wrote:

I've been taking small dose aspirin for years for cardiac stuff before BC came along. My mo is also a researcher and said no go for BC. So take if you have other reasons and your docs ok it otherwise just another thing for your liver to process.

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Dec 10, 2017 09:46PM KB870 wrote:

" To each her own, but please remember that your decisions now will affect your family later."

Maybe it's just me but I find that a very nasty comment designed to guilt trip us. I believe we all consider our family (if we have them) and our friends. As has been said before it's a very individual decision but some don't seem able to accept that and it's a shame.

Surgery 9/18/2016 Lumpectomy: Left Dx 10/6/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/30/2016 Lymph node removal: Sentinel Chemotherapy 11/28/2016 Taxol (paclitaxel) Targeted Therapy 11/28/2016 Herceptin (trastuzumab) Radiation Therapy 4/3/2017 Multi-catheter: Breast
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Dec 10, 2017 11:53PM NotBrokenJustBent wrote:

I don't know why this always becomes such a contentious subject. I am just over 4 years on AIs and going for 5 but now that most MOs are recommending 10 I will need give that serious thought. One cannot discount that estrogen is necessary for bone, muscle, (including heart), skin, brain, and overall body heath. To artificially deplete this hormone certainly takes it's toll on the body leading to rapid aging. I have seen the external consequences of my thin and shedding hair, wrinkles, sagging face and loss of muscle mass, so I must wonder what the internal toll is. I know two women who take HRT therapy due to very bad menopausal issues. They have been on the drug for several years and look 10-15 years younger than I. Is it a coincidence?

Based on one's stats, lifestyle, SEs and personal level of emotional comfort, decisions must be made, but there are no easy choices and no wrong decisions. Is it a victory over BC if one dies of a heart attack but NED?

Best of luck to all in their decision making process.

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