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All TopicsForum: Canadians Affected by Breast Cancer → Topic: Refusing hormone therapy

Topic: Refusing hormone therapy

Forum: Canadians Affected by Breast Cancer —

Canadian health care, clinical trials, and life in general in the north.

Posted on: Jul 11, 2018 03:39PM

Crosbyfan1987 wrote:

has anyone here refused to take either their Tamoxifen or AI?

Dx 1/31/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 3/12/2018 Lumpectomy; Lymph node removal: Sentinel
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Jul 11, 2018 04:11PM Pi-Xi wrote:

I wanted to avoid tamoxifen for DCIS so I had a BMX for which the pathology showed invasive cancer and now I've been taking the drug for nearly two years.
Oncotype 12 Dx 4/7/2016, DCIS, Left, 2cm, Stage 0, Grade 1, ER+/PR+ Surgery 7/11/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 8/3/2016, DCIS/IDC/IDC: Papillary, Left, 1cm, Grade 2, ER+/PR+, HER2- Hormonal Therapy 9/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 11, 2018 11:28PM WC3 wrote:

What are your concerns about the hormone therapy?

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Jul 12, 2018 07:02AM dtad wrote:

I refused anti hormone therapy from the start. I'm over 3 years NED. So far so good! Its a very personal decision and I'm not advocating it for everyone. Please let me know if you want more details. Good luck to all...

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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Jul 12, 2018 08:39AM Crosbyfan1987 wrote:

WC3 I am concerned about the side effects.

Dtad yes I would like more details thanks.

Dx 1/31/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 3/12/2018 Lumpectomy; Lymph node removal: Sentinel
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Jul 13, 2018 06:52AM dtad wrote:

Hi everyone...To start I had a debilitating autoimmune disease at the time of my diagnosis. My QOL has been poor for over 15 years. I was just not willing to risk it getting worse. I also did not like the fact that hormone levels were not checked before, during and after anti hormone therapy. The only way to know if it was working was to wait and see if you have a recurrence! That just seems crazy to me. So I did tons of research and decided to try to lower my estrogen levels naturally. I lost 30 pounds, exercise daily and take several supplements. I take DIM in leu of an aromatase inhibitor. I also take melatonin, baby aspirin, mushroom extract and berberine to regulate my blood sugar. So far this is working for me. 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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Jul 13, 2018 06:54AM Meal1980 wrote:

following

Camille
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Jul 13, 2018 06:57AM dtad wrote:

Meal1980...just curious what you mean by following

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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Jul 13, 2018 06:57AM Meal1980 wrote:

Can't find DIM in the abbreviation explainer... help?

Camille
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Jul 13, 2018 07:01AM dtad wrote:

DIM is a group of crucerifous vegetables. The theory is that it lowers the bad estrogen that causes breast cancer but not the good estrogen that we need for every other organ in our bodies. Hope that helps

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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Jul 13, 2018 07:02AM - edited Jul 13, 2018 07:04AM by Meal1980

just wanted to post that I am reading along...that way I will get an email when someone replies.

lol.. or I thought thats how it works.

Camille
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Jul 13, 2018 08:22AM Crosbyfan1987 wrote:

Yes I heard about that.

Dx 1/31/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 3/12/2018 Lumpectomy; Lymph node removal: Sentinel
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Jul 16, 2018 07:33AM kaylie57410 wrote:

hi to all-felt compelled to respond here-we all want to avoid medication side effects when the downside outweighs the good effect=so much of the theories of supplements,herbs,dietary guidelines are only theories-=unproven by scientific facts to back what are often false claims.Much of what you read on the internet is just not true-as to alternative treatments which people elect to use INSTEAD of proven medical treatments=as opposed to complementary treatments that help cope/feel better overall with this disease and treatments-but dont treat the actual cancer.

Dont make the life threatening mistake of thinking you know more than your doctors and careteam about how to successfully treat your breast cancer---wake up call--you dont!They are experts at the top of their game and are trying to save us!

dtad=am glad you are doing well-and you certainly can have your levels tested-is what pre menopausal women have done to find out when menopause is occuring=there is not good estrogen and bad estrogen affecting different organs-is just estrogen.Good for you that you are 3 years out with NED---yet---that is the key word here--yet---is well shown that recurrence is at highest risk in the first 3 of 5 years,and there is a 40%plus reduction in this risk with a hormone blocker-you had 2 kinds of cancer of intermediate grade as to aggressiveness with ILC being known to put you at higher risk for recurrence. Mastectomy has not been shown to eliminate recurrence risk any better than lumpectomy with radiation

I am a long time RN ,skilled at seeking out academic research==dx'd a year ago with stage 2 early breast cancer=had lumpectomy,radiation,4 rounds chemo-breezed thru that and saved my hair with cold capping-=yeah!!-and now entering my 6 month of letrozole with minimal side effects-some sleep disturbances,achy feet and knees first thing in am-resolves with advil and stretching exercises,and mild dysparunia-easily dealt with with non water based lubricants

We are all individuals with our own circumstances,yet ladies--do trust your doctors advice -we are in a fight for our lives over the long haul-give yourself the best possible odds at a long life ahead=hugs to all,Kaylie

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Jul 16, 2018 08:23AM - edited Jul 16, 2018 08:24AM by Legomaster225

Crosbyfan, would you consider taking the tamoxifen or an AI and see if you have side effects? I did not have experience with an AI (yet) but the onlyside effect I have from tamoxifen is possibly short sleep cycles. I have never been a good sleeper and always a night owl. Really nothing else has bothered me. Many women do have side effects, many women do not. I don't think those without side effects post as much either out of respect/guilt for those who do. If your concern is just side effects maybe you could try it and see how your body reacts. I know I was terrified to take tamoxifen after reading some of the posts on this board but really the side effects have not materialized for me. At least not yet. I will be switching to an AI at the end of the year based on my menopause bloodwork. The saga continues but I am happy to have a proven medication to help my odds. Everyone had to make their own decisions though. Best of luck to you💕

Oncotype score 39. One node positive at diagnosis negative after preadjuvent chemo. Bilateral cancer discovered at BMX. Left breast was supposed to be prophylactic. :-( Dx 12/3/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 1/19/2017 AC + T (Taxol) Dx 6/22/2017, IDC, Left, <1cm, Stage IB, Grade 1, 0/0 nodes, ER+/PR+, HER2- Dx 6/22/2017, DCIS, Left, <1cm, Stage 0, Grade 1 Surgery 6/22/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 8/22/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/17/2017
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3 hours ago - edited 3 hours ago by dtad

Kaylie57410....I found your post very offensive. I'm also a RN. Who are you to judge me? You have no idea what my individual circumstances are and what lead to my decisions. Scare tactics are completely unnecessary. I pretty much disagree with everything you said. Lets please try to be respectful of others decisions. We are here to support each other. You do you and I'll do me!

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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