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Topic: 10 years on Tamoxifen. Scared to stop.

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: Feb 20, 2018 11:17PM - edited Feb 20, 2018 11:20PM by KP2018

KP2018 wrote:

I was diagnosed with stage II breast cancer in late 2006. Chemo, surgery, radiation and 10 years of Tamoxifen. My doctor said no more, as there are no benefits to taking it for more than 10 years. This drug has been my security blanket, and I am scared to death to stop taking it. I am no longer protected, so now what? I had thought that I could go on to another drug but then found out that the horomone therapy is considered beneficial for 10 years *total* (no matter if it's Tamoxifen for 5 years/another drug for 5 years, or one or the other only for the 10 years). I had just begun to stop thinking about cancer all the time in the last few years, and now I feel like I did the day I was diagnosed...very scared and depressed. :(

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Feb 20, 2018 11:24PM Outfield wrote:

I'm not even thinking about any research, etc, but just that I absolutely understand that fear.

When I almost stopped my AI at 5 years, I felt like I was about to be naked.

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Feb 20, 2018 11:32PM Michelle_in_cornland wrote:

KP, why don't you start weening down over a period of several months, that way you won't feel so exposed. See if you can get your MO to agree with a step down approach.

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 2/14/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Mar 6, 2018 07:31PM - edited Mar 6, 2018 07:31PM by KP1970

(replying under different account/couldn't log into the first one):

Thank you. I called the dr who wrote my last refill and she said I can come in and talk to her if I want. She is over two hours away. I hate to drive all that way only to be told that's it...I have had the Tamoxifen for 10 years and now I'm done. :-/

What's to stop the estrogen in my body from wreaking havoc again. It's how I got breast cancer in the first place.


Kim Dx 10/31/2006, IDC, Right, 2cm, Stage IIB, Grade 3, 1/20 nodes, ER+/PR+, HER2-
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Mar 6, 2018 07:42PM Falconer wrote:

KP, There is a test called the breast cancer index. If you search it BCI, you can find out a little about it. It could be useful in your decision making. It might not be, but it's worth a look. Best to you.
Strong is the new strong. Dx at 45. Onco 16. Monthly Lupron shots Nov. 2016-December 2017 Dx 7/2016, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 7/2016, DCIS, Left, 5cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 5/29/2017 Reconstruction (left): DIEP flap Surgery Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 8, 2018 09:49PM - edited Mar 8, 2018 09:50PM by KP1970

Thank you, but I would prefer to continue the Tamoxifen. I wish I was able to make the decision to continue, but I'm not.

Kim Dx 10/31/2006, IDC, Right, 2cm, Stage IIB, Grade 3, 1/20 nodes, ER+/PR+, HER2-
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Mar 9, 2018 04:07AM klvans wrote:

KP I don't know if this will make you feel better but the reason they have you stop after 10 years is that your body builds up a tolerance and it becomes ineffective so the reward vs risk doesn't make sense any more. In a way, your body has eased you off from it already and apparently you are doing fine. It's hard to deal with the emotional side of cancer. I wish you well.

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Jul 30, 2018 09:51PM Carla-Faith wrote:

I am so happy to find this post. I too have recently stopped taking tamoxifen after 10 years. I feel so insecure about this. Surely, there is something else I should be taking. I read somewhere a study that said taking it for 15 years is being studied. Do any of you know anything about that? I have lost my security blanket and I feel so nervous about it.

Thank you for any responses and experiences with this. This group is so helpful.

Faith

Carla Faith
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Jul 31, 2018 04:54AM Michelle_in_cornland wrote:

Can you take Evista? It is a preventative estrogen blocker and a bone builder.

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 2/14/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Nov 17, 2019 04:51PM BetNY22 wrote:

coming across this post a while after it was created. Petrified of stopping tamoxifen after 10 years although I have a few to go but they keep suggesting hysterectomy due to bleeding issues and I’m not happy with switching to other meds.

Wondering what you decided..

Dx 9/28/2012, DCIS Dx 9/28/2012, IDC, Left, 3cm, Stage IIB, 3/30 nodes, ER+/PR+, HER2- Surgery 10/23/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 11/28/2012 AC + T (Taxol) Radiation Therapy 4/1/2013 Breast, Lymph nodes Hormonal Therapy 4/3/2013
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Nov 17, 2019 08:34PM Lucy55 wrote:

https://www.bbc.com/news/amp/uk-36455719

I found this interesting..any thoughts ???

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/13/2014
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Nov 18, 2019 01:36AM Falconer wrote:

BetNY- I too have uterine issues related to Tam. I saw my GP a few weeks ago and we talked about the possibility of an endometrial ablation instead of a hysterectomy. I did find an article on the NIH website too. It’s something to think about if you’re continuing the drugs.

Strong is the new strong. Dx at 45. Onco 16. Monthly Lupron shots Nov. 2016-December 2017 Dx 7/2016, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 7/2016, DCIS, Left, 5cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 5/29/2017 Reconstruction (left): DIEP flap Surgery Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 27, 2020 10:56PM Carla-Faith wrote:

I know this is an older post. However, I am hoping to clam my fears. I am 13 years out from a Stage II diagnosis with 3 positive nodes. I took tamoxifen for 10 years and then nothing. I have been feeling anxious lately. My husband recently passed away from lung cancer with little symptoms. I am afraid of everything lately. It has been 2 and one half years that I have taken nothing and I still feel like I should be taking SOMETHING. I miss the feeling that tamoxifen was keeping everything in check.

Do any of you take something after 10 years? How do you calm the fears? Supplements?

Carla Faith
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Jul 24, 2020 11:43PM - edited Jul 24, 2020 11:53PM by kcjules

To KP2018:

I met with my MO on Monday and asked the same question- what happens after stopping Tamoxifen after 5 or 10 years? I am only 47 and want 40-50 years of prevention. She gave me this analogy:

The ER+and PR+ is like fertilizer for the breast cancer cells. Tamoxifen blocks the fertilizer. After years of it being blocked then nothing grows. I sure hope she's right. I am new to this whole thing. I start Tamoxifen in a week. I am hoping there will be new studies that come out while I am taking it so I know what direction is best. I have been advised to only take it for 5 years.

Dx 12/12/2019, DCIS, Right, 2cm, Stage 0, Grade 3, ER+/PR+ Surgery 3/5/2020 Lumpectomy: Right Radiation Therapy 4/20/2020 Whole-breast: Breast Hormonal Therapy 8/2/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 25, 2020 05:58PM Jinx27 wrote:

Kcjules, my MO said something similar. Im a 32 y/o patient who is 4 years out of my diagnosis who is on Arimidex and Lupron. The first initial 5 years are quite important and most MO's are more flexible with switching medicines after the 5th year.

Our cancer (hormonally receptive) can and has returned 15 years after the initial diagnosis so being on something proves to lower the risk.

Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/29/2016 Arimidex (anastrozole)
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Jul 25, 2020 06:17PM BlueGirlRedState wrote:

So hard to know on these drugs. Did Tamoxifen for 5 years 2009-2014 after radiation and lumpectomy. Tamoxifen prescribed, even though I was all ready menopaused. Oncologist said it had been around for a long time, and he had more confidence it than the newer AIs. No detected cancer until 2016, same breast. Was it always there? Had the tamoxifen been keeping it at bay? A new cancer? Long story short, I have BC for the third time .Oncologist has suggested that the Ibrance and Arimidex I now take will probably be forever. Oncoloogist thinks I should consider surgery, but since the Ibrance is shrinking the tumor, and axilla has more complexity than breasts, I am holding off. Concerned about damage to nerves, tendons, muscles, and worsening lymphedema.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

2019 ER+ R-axilla. Initially clot suspected, then lymphedema suspected even though in opposite side. More imaging and biopsy showed 2.5 cm tumor in R-axilla. Ibrance and Arimidex Rx'd. Tumor has shrunk from 2.5 cm Sept 2019 to 7 mm April 2020. Hoping august scan shows more shrinkage.

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