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Topic: Monitoring for Canadian Women on Tamoxifen?

Forum: Canadians Affected by Breast Cancer —

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

Posted on: Nov 26, 2018 04:47PM

DanceSmartly wrote:

Hello All:

I was really surprised to find out that the Alberta protocol for women on Tamoxifen does NOT include baseline or follow-up pelvic / transvaginal ultrasounds to monitor for potential endometrial and/or ovarian cancer. Is this the case in other Canadian provinces as well?

Because I have PCOS and thus a history of ovarian cysts, I requested a referral to an endocrinologist and a gynecologist, both of whom agreed I should be monitored while on Tamoxifen.

Interested in your experiences!

Dance

Dx at 42 via screening mammogram Dx 11/8/2017, DCIS, Left, 2cm, Stage 0, Grade 2 Dx 11/8/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 12/7/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 12/18/2017 Lumpectomy: Left Radiation Therapy 2/5/2018 Whole-breast: Breast Hormonal Therapy 5/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 26, 2018 06:39PM Spoonie77 wrote:

Hi DanceSmartly -

I live in the US and wanted to have a baseline before going on Tamoxifen. Both my primary care and oncologist both told me no need. It worries me. I'm sorry that was the case for you in Canada too. I'm young, as you are, and am very concerned about the uterine side effects too. I see my MO again in Dec and am going in with research, studies, and pages of text stating the need for this in younger women. Hopefully I can "twist" her arm into setting up a baseline before I would feel comfortable and safe in taking the Tamoxifen.

Thanks for starting this thread, even though I'm not in Canada, I hope to hear what others say are the standards of care where they are. I'm relieved for you that your endo and gyn did agree to start a baseline for you. IMO it should be standard operating procedure given the nature of that drug.


"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Nov 28, 2018 11:02AM - edited Nov 28, 2018 11:03AM by DanceSmartly

Hi Spoonie,

Yesterday I found this publication, which may help explain why the practice is NOT to perform screening US on premenopausal women taking Tamoxifen:

https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Gynecologic-Practice/Tamoxifen-and-Uterine-Cancer

I guess the good news is that being younger and hence premenopausal, it seems our risk developing of endometrial cancer thanks to Tamoxifen is lower, particularly if we are still having periods. I intend to continue my monitoring because of my history of ovarian cysts (two showed up on my baseline ultrasound earlier this month, one in each ovary, both septated but with no internal bloodflow).

Good luck with your appointment with your MO!

Dance

Dx at 42 via screening mammogram Dx 11/8/2017, DCIS, Left, 2cm, Stage 0, Grade 2 Dx 11/8/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 12/7/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 12/18/2017 Lumpectomy: Left Radiation Therapy 2/5/2018 Whole-breast: Breast Hormonal Therapy 5/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 23, 2018 06:29PM - edited Dec 24, 2018 08:46AM by BCat34

When I had my first post-chemopause period return in Calgary, was sent right away for transvaginal ultrasound. Thankfully all was well. Had a follow-up ultrasound 6 months later. No new symptoms or subsequent ultrasounds. Again, thankfully all was well. Periods are almost always every 37 days now at age 40. I'm on tamoxifen for 10 years and almost 6 done

Dx 6/30/2011, IDC, Left, 6cm+, Stage IIB, Grade 3, ER+/PR-, HER2- Chemotherapy 7/15/2012 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 1/24/2013 Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 23, 2018 11:21PM Moderators wrote:

Wow, BCat34, that's really amazing and great. We adore these stories. Thanks for sharing. Medicating

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Dec 24, 2018 08:05AM 70charger wrote:

I am post menopausal & have the transvaginal ultrasound as part of my yearly checkups. I'm 5 yrs out now from dx. By doing it as part of my yearly check up it showed a thickening from 4 mm to 14 mm over the years. Had the d & C done last year, all is good. I think they do it not so much as a baseline but to keep track of what is going on with it. My Gyn said the new rule is to have the ultra sound done every 2 years to avoid panic & stress. I was on Tamoxifen for 3 years & Anastrozole for 1 1/2 years. I took myself off the Anastrozole 6 months early. The anesthesia from having the D &C triggered Glaucoma. Got home from one surgery by 3;30, back in ER by 2:30 am. Eye surgery by noon, wait the weekend then eye surgery on the other eye on Monday. 3 surgeries in 5 days, so much fun.

Dx 7/11/2013, IDC, 2cm, Stage I, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/9/2013 Lumpectomy: Right Surgery 8/9/2013 Lymph node removal: Right, Sentinel Dx 8/21/2013, DCIS, 2cm, Grade 3 Chemotherapy 9/11/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/9/2013 Breast Hormonal Therapy 12/13/2013 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Arimidex (anastrozole)

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