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Topic: Late 40s, done w/ Tamoxifen, getting period again and worried

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer —

Meet others in this age-range who share similar life issues.

Posted on: Nov 18, 2018 10:28PM

kika2013 wrote:

I'm about 5.5 years out from diagnosis and recently finished Tamoxifen (about 6 months early with my onc's blessing). After a few months of random periods/light periods, I now seem to be back on my old schedule of every 28/29 days, very mild PMS symptoms (some cramping, painful breasts), normal periods. It's making me very nervous as I think about those hormones washing through my breasts, especially, as my cancer was very hormone positive (ER and PR). I'm 47 now, diagnosed at 42. I was released by my onc to survivorship in the summer, but haven't seen anyone there yet and am just wondering if anyone can speak to this issue. After 5 years of trying to prevent hormones, it feels sort of terrifying to be so aware of them again and to wonder what they might be encouraging to grow. Part of the reason my onc said it was okay to stop Tamoxifen a bit early was because she thought I was hitting perimenopause (also, it was making me insane...!). That doesn't seem to be the case. I had a very small tumor, oncotype 5, no genetic component or family history. I feel like in some ways my very fortunate diagnosis has made doctors just assume all's fine.


Thanks for all experience/advice.

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Nov 19, 2018 03:56AM Palesa2018 wrote:

Hello Kika2013, it sounds like you are not yet in menopause. Have you considered ovarian suppression? That will limit the hormones coursing through your body then you and your MO can discuss further need for tamoxifen. Just my view.

All the best.

Dx 6/7/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/12/2018 Lymph node removal: Sentinel Surgery 7/9/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/9/2018 Hormonal Therapy 9/12/2018 Zoladex (goserelin) Radiation Therapy 9/16/2018 Whole-breast: Breast, Chest wall Hormonal Therapy 11/4/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 19, 2018 06:27AM Sjacobs146 wrote:

My onc recommended that I stay on Tamoxifen for 10 years. I'm 4 years out and now I'm on Arimidex instead since I'm post-menopausal. My understanding is that the newer guidelines for Tamoxifen is 10 years. My onc won't let me go until I am 10'years out. You may want to have a conversation withy

Your onc about staying on Tamoxifen, especially if you tolerated it well

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/23/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/25/2015 Breast Hormonal Therapy 4/16/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 19, 2018 06:43PM Falconer wrote:

Kika,

Sorry. I understand your fears 100%.

Has anyone recommended the BCI? It's an indexing test to determine if additional hormone therapy would be beneficial. It can give peace of mind to show that you're in more of the clear than your hormones might suggest.

Good luck to you. You're not alone.

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 5/30/2017 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 8, 2019 03:30PM Allenan wrote:

I have been on Tamoxifen for almost 7 years now. Onc says I need to be on it fir 10 years two.

Having a scare now because my period just came with a vengeance after being non existent for about 11 months. I am 54. I thought i was done with periods. Last TV US showed endo thickening of 9mm. GYN says I need Biopsy. I had one in 2016 for same reason. I just did not have a monster period like this. The last one lasted 1.5 days and was in April 2018. I am worried now. Anyone with similar experience?

Lumpectomy 5/20, Re-excision 6/6 and re-re-excsion 6/24. Chemo 7/17 TC x 4. Faith matures into Trust and I fully exercise my Faith as I go through this journey so I can trust God totally. Dx 4/18/2011, IDC, 1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR-, HER2-
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Apr 13, 2019 04:06AM Palesa2018 wrote:

Hi Allenan, sorry to hear that. I hope it is nothing to worry about. Let us know how you go.

Dx 6/7/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/12/2018 Lymph node removal: Sentinel Surgery 7/9/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/9/2018 Hormonal Therapy 9/12/2018 Zoladex (goserelin) Radiation Therapy 9/16/2018 Whole-breast: Breast, Chest wall Hormonal Therapy 11/4/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 13, 2019 05:41PM - edited Apr 13, 2019 05:42PM by Tresjoli2

Allenen i just went through this. No period for 4 years and then Bam! Period from hell. TV US showed endometrium at 15mm. Biopsy was totally negative, and I haven't bleed since. My MO called it breakthrough bleeding...My OB/GYN said to expect it from tamoxifen.

Diagnosed at age 40 after going for my baseline mammogram. Dx 4/21/2015, IDC, Left, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 4/21/2015, DCIS, Left, 4cm, Stage 0, Grade 3 Surgery 5/18/2015 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 6/19/2015 Herceptin (trastuzumab) Chemotherapy 6/19/2015 Taxol (paclitaxel) Chemotherapy 8/7/2015 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 9/24/2015 Whole-breast: Breast Hormonal Therapy 10/11/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 22, 2019 09:22AM - edited Apr 22, 2019 09:23AM by Allenan

Tresjoli....Thanks for your post. I am on my way to my GYN now as endometrial lining went from .9mm to 21mm in one year. I am having the Endo Biopsy this morning. I always have a yearly TV ultrasound. I am nevous but your post help to quench my anxiety. Will keep posting update.

Lumpectomy 5/20, Re-excision 6/6 and re-re-excsion 6/24. Chemo 7/17 TC x 4. Faith matures into Trust and I fully exercise my Faith as I go through this journey so I can trust God totally. Dx 4/18/2011, IDC, 1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR-, HER2-
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Apr 22, 2019 10:17AM - edited Apr 22, 2019 10:18AM by farmerlucy

This Post was deleted by farmerlucy.
Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/10/2012 Lymph node removal: Sentinel Surgery 7/21/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015 Prophylactic ovary removal
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Apr 22, 2019 10:30PM Allenan wrote:

Had my biopsy today. Now the waiting game begins. I get the results in a 7 to 10 days. Also did a blood test to see my FSH and estradiol levels to see if i am actually in menopause. 2 years ago i was told i was not (via the test results).

Lumpectomy 5/20, Re-excision 6/6 and re-re-excsion 6/24. Chemo 7/17 TC x 4. Faith matures into Trust and I fully exercise my Faith as I go through this journey so I can trust God totally. Dx 4/18/2011, IDC, 1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR-, HER2-

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