LCIS & Tamox

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covertanjou
covertanjou Member Posts: 569
edited June 2014 in LCIS (Lobular Carcinoma In Situ)
LCIS & Tamox
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  • covertanjou
    covertanjou Member Posts: 569
    edited October 2009

    Well ladies, I finally filled my prescription (had it since beginning of Sept) and took my first pill.  I have to admit I am afraid of the SEs, but my doctors have convinced me I should take it.  I have LCIS/ALH/ADH, and according to my Onc, BS, therapist and primary care-giver I should take it. Yes, I asked everyone!!  LOL!  

    What are your experiences on this?  Those of you with LCIS/ADH/ALH:  has taken Tamox helped you to not progress to a scarier stage?

    I know there is a Tamox thread, but I wanted to ask you ladies who have the same dx as me. 

    Mary 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Mary---- I took tamoxifen for 5 years and tolerated it well overall with only minimal SEs, mainly hot flashes which were annoying, but certainly manageable.  My scans have been clear and I've never had to have any additional biopsies. My mom also took it many years ago, tolerated it well, and is now a survivor of ILC over 23 years without any recurrence. I would recommend a yearly transvaginal ultrasound to  monitor both the uterine linig and the ovaries. PM me if you have any questions.

    Anne

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  • covertanjou
    covertanjou Member Posts: 569
    edited October 2009

    Thank you, Anne.

    I appreciate you taking the time to share your story.  I have been really afraid to take it, but I am more afraid of my stage 0 progressing to something else.  Hopefully the SEs will be manageable. 

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  • leaf
    leaf Member Posts: 8,188
    edited October 2009

    I have classic LCIS, ALH, and ductal hyperplasia (not atypical ductal hyperplasia) and have ~2 years  (out of 5)  to go.  I started tamoxifen 6 months after my LCIS diagnosis. I only had 'warm flashes'; I just got declared postmenopausal this spring, so the warm flashes may have happened anyway. 

    I have had 3 endometrial polyp removal sessions, but one of these was before I had my first breast biopsy, therefore before I started tamoxifen. All have been benign.  (I stopped tamoxifen for 3 months last year due to an unrelated speculation by a non-onc/gyn/GP/cardiovascular doc.)

    I have had 2 more breast biopsies since my LCIS/ALH diagnosis (1 year after diagnosis, 6 months after tamoxifen start, one biopsy was scar tissue, the other calcifications; the calcifications biopsy showed the ductal hyperplasia not atypical. (In other words, both were benign.)

    I think the idea of yearly transvaginal ultrasound (TU) is somewhat controversial, at least under some circumstances.  I do not get routine annual TUs.

    This old 1999 paper questions the use of TU to detect endometrial cancer; the one they found in the series had an endometrial thickness of 3mm. http://www.ncbi.nlm.nih.gov/pubmed/10502419

    This 2003 paper seems to imply these is no consensus in following tamoxifen treated patients with TU - it may depend on their risk factors. http://www.ncbi.nlm.nih.gov/pubmed/14563611 or initial results.

    But this is controversial; other studies recommended yearly TU on tamoxifen. http://www.ncbi.nlm.nih.gov/pubmed/10726629

    This paper encourages a baseline TU before tamoxifen starts, because many of the women in this study had endometrial pathology BEFORE starting tamoxifen. http://www.ncbi.nlm.nih.gov/pubmed/16678960

    Of course, symptomatic women should have them checked out.

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