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Topic: Thinking of quitting Tamoxifen

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: Sep 22, 2020 09:26PM

RdhJoy wrote:

I had breast cancer in 2018, no nodes, ER positive along with all the details below. Had a lumpectomy for my 7mm tumor along with chemo (oncotype of 28) and radiation. I started Tamoxifen 20 mg in June of 2019. Within a few months, I began having side effects that my MO blew off such as dizziness and headaches. Each month that went by brought new SE’s including insomnia, anxiety, uncontrollable crying, mood issues namely anger, sweating all the time. I was offered Effexor and declined. Personally, I don’t want to take another pill to fix SE’s from another pill. In May of 2020, I started having a few days of light vaginal bleeding. I assumed it was my period returning (hadn’t had one since I started chemo in Jan 2019) since I’m only 45. In June, I started bleeding again and it didn’t stop. It was then I learned of the other SE of Tamoxifen. Was taken off Tamoxifen as it was causing this. Went for my ultrasound and biopsy and was found to be benign polyps. At this point, I was still bleeding and was advised by dr to have a partial hysterectomy. I just had that done (uterus and cervix out) and the drs want me to go back on T. I feel so good—like my old self—and I basically just don’t want to. I know the risks but honestly I’d rather live 5 happy years than spend the next 10 miserable on that medication. I don’t want to do Lupron with an AI either. Messing with my hormones makes me act like a lunatic. Is there anyone who doesn’t take T against medical advice? Is there legitimate alternatives for estrogen suppression?

Thanks in advance for any words of encouragement or recommendations.

Dx 9/19/2018, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 11/5/2018 Lumpectomy: Left Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 22, 2020 11:01PM MinusTwo wrote:

I didn't have hormone positive cancer, so this isn't an issue I can speak to. But every day I read tons of posts about just this same issue. If you go to the search bar, put in Tamoxifen and you'll see lots of responses.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 23, 2020 10:14AM edj3 wrote:

Only you can decide if the risk/benefit/side effect ratio works for you.

I will say that I did try to take tamoxifen, and subsequently stopped because of side effects that greatly inferred with my running. I'm good with my decision. I'm glad I tried it so I can say that I absolutely gave it a shot. Equally, I'm comfortable with stopping that drug.

None of us can say what the right choice is for you. Just know either way, at least one of us has made the same decision and either continued taking it, or in my case stopped taking it.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 23, 2020 09:22PM VioletKali wrote:

I was diagnosed at age 31!I am refusing anti hormonal therapy due to quality of life issues.

Like you said "I will take 5 good years rather than 10-20-30 awful years.

My tumor was 1.7cm, 10% of it was noted to be DCIS. No family history of cancer at all. Discontinued Chemo d/t uncontrollable side effects which caused hospitalizations, blood transfusions, and poor quality of life. I am doing well! Dx 6/19/2014, DCIS, Stage 0 Dx 6/19/2014, IDC, 1cm, Stage IA, Grade 3, 0/10 nodes, ER+/PR+, HER2+ Surgery 8/18/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 9/15/2014 Herceptin (trastuzumab) Chemotherapy 9/15/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)

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