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Topic: off birth control heavy bleeding unbearable

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

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Posted on: Sep 2, 2011 01:01PM

lrfortuna wrote:

I am not sure if anyone has had a similar situation.  I was just recently diagnosed with DCIS grade 3 ER+ PR weakly-positive.  I am 43 years old and had been on birth control pretty much my entire adult life except for pregnancies, mainly due to the terribly heavy periods that I get.  I have had to get off bc now with diagnosis, and have gotten period again 2 weeks after one and it is already getting so heavy, hopefully not TMI, but super+ tampon and by the time I get to bathroom door I need another. 

 I have not had genetic testing done yet but have an appt (2nd opnion) next week and hope to.  If I get a lumpectomy, and need tamoxifen, will it get even worse?  I guess I can consider the ablative surgery after all this is over.  I am finished having kids, is considering a hysterectomy too much and would it spare the tamoxifen?  I am just thinking it might be an option to consider no more crazy bleeding which really has an effect on work and every 15 min bathroom trips, and plus avoid tamoxifen side effects I hear can be nasty.

 One more question - does anyone know if premarin vaginal-cream is still allowed with hx of ER+?

Thanks for any advice.

Dx 8/10/2011, DCIS, Left, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Dec 26, 2011 01:01PM lhasamom wrote:

I had taken birth control pills to regulate my period for about 8 years.  When I went off, I had the heaviest periods on earth!!!!  I was going through a 40 ct. super plus box of tampons in 2 DAYS!  It got so bad, I would sit on old towels because when I went to get up, it would just flow out!  This started Dec. 30th and continued till Feb. 1st!  Since I was done having children, I opted for a hysterectomy, and it was the best thing I ever did!!!!  I had an umbilical hernia repair at the same time, and the hernia repair caused more pain than the hysterectomy!  I wish I had had the hysterectomy YEARS ago!  I was diagnosed with BC in July and had mastectomy in August. I am extremely luck, it was caught early so I don't need chemo or rad., just Tamoxifan.  The hot flashes have been horendous.  I was prescribed Gabapentin which has helped a little.

lhasamom--FIGHT LIKE A GIRL!!!!!!! Dx 7/5/2011, DCIS, 1cm, Stage I, Grade 1, 0/9 nodes, ER+/PR-, HER2+
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Dec 26, 2011 02:14PM YramAL wrote:

irfortuna-I, too was on BC pills for years to address the same issues. I actually had gone off of them a couple of months before my breast cancer diagnosis. I went off of them because my doctor wanted to see if I was entering menopause and BC pills can sometimes keep your periods going even if you are entering menopause. Alas, I was not entering menopause(still am not, and I'm almost 52-ack.)I had a couple of really, really, heavy periods before I started taking Tamoxifen. Tamoxifen has seemed to help some. My periods are still heavy, just not super-plus tampon, leave the bathroom, gush, heavy like they used to be. I always wear a back up pad just in case.

One tip my gynecologist gave me that also seems to help is to take the maximum dose of ibuprofen at the first sign of bleeding. 

If my heavy periods do come back, I have been given the option of a hysterectomy, but I'm hoping not to have to go there. Like I said, I'm almost 52 years old, and I hope to go through menopause soon. The only positive thing about still having my periods is that I can still take Tamoxifen. I would have to switch to AI's otherwise, and from what I hear, they have more severe side effects.


Mary-Oncotype Score 11 Dx 12/7/2009, IDC, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Dec 26, 2011 02:22PM lisa-e wrote:

Mary, post menopausal women can take tamoxifen.   Once you become menopause you do not have to start taking AIs unless you want to switch.  Tamoxifen will still be effective.  It is just that AIs are slightly more effective.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3 Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Left, Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Dec 26, 2011 09:52PM Blessings2011 wrote:

Can't address the issue of BC and Tamoxifen, but I can tell you that I had horrific periods when I went off birth control pills. My problem, however, was fibroids. I was using two tampons at the same time AND a giant pad the size of a twin bed mattress!!! I hit menopause early - 47 - and the following year had a hysterectomy. All my girlfriends who had one told me I would say two things afterwards: 1) I feel like a new woman! and 2) Why did I wait so long? They were right.

The bonus was I had an LAVH - Laparoscopically Assisted Vaginal Hysterectomy. I had two teensy incisions in my lower abdomen, and one through my belly button. Minimal cutting, no scarring, minimal pain, short recovery.

Because of my cancer risk even back then, I had a total hysterectomy, including ovaries.

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/5/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant Hormonal Therapy 9/5/2012 Arimidex (anastrozole) Hormonal Therapy 10/22/2013 Femara (letrozole) Dx 7/15/2021, IDC: Papillary, Left, <1cm, Stage IA, ER+/PR+, HER2-
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Jan 7, 2012 08:23PM Blinx wrote:

I used to have normal periods. When I was on Tamoxifen, they pretty much went away altogether. But I couldn't tolerate the side effects, and quit it after 3.5 years. Then my period came back with a vengeance!!! Very heavy bleeding, huge clots, just awful. I did find out that I had a large polyp, had that removed, then had a D&C. And still had an awful period after that, to the point where it was very difficult to leave the house.

At my followup appointment at the ObGyn (where I had to use the bathroom 3x it was so bad), he gave me a few options. One was ablation. The other was a new medicine that had been out for a little over a year: Lysteda. It's non-hormonal, so even though I'm ER+, I can take it. And you only take it when needed. You take 2 tablets, 3 times a day, beginning the first day of your period. I was so desperate I filled the Rx right away and took the first dose in the parking lot of the drug store! 

I think it's helping. Hard to tell, not sure if my period is just finally going away after 8 or 9 days, or if its really working. Downside -- there are some side effects that are tolerable, but there is danger of blood clots. Also, it's very expensive if not covered by insurance. I've read many reviews online now, and most women find it to be a godsend, although others have had problems or it just didn't work for them. But I just wanted to get the word out there, since I didn't know there was this option.  

Dx July 2007 DCIS Grade 3 (at age 46); Lumpectomy Sept 2007. ER+/PR-; Finished 33 rad tx Jan 2008. 3.5 years of Tamoxifen then quit..
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Apr 25, 2013 08:15PM violet_1 wrote:

I know this is an old thread...but I'm wondering about anyone's experiences w/ LYSTEDA to help with their heavy periods...thanks!

violet_1 Surgery 1/30/2012 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 11/13/2012, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 1, 2013 06:13AM jill47 wrote:

Hi Violet - what a good thread.  I took Lysteda back early February this year, it worked but it was a temporary fix while my gynecologist figured out the reason for abnormal bleeding (8 days straight of big clots pouring out when I went to the bathroom). Transvaginal u/s revealed 10mm polyp (I am not on tamoxifen) which was removed 3 weeks ago had a hysteroscopy/polypectomy/D&C.  That surgery was a breeze compared to my bc surgeries this last 10 months!  BTW I was on birth control for 20 years straight until gyno gave me bc dx, that day I went off of it for good.  Lysteda is expensive too, my gyno's nurse directed me to their website to print a coupon that is good for a few fills (max you will pay is less than $50).  I hope your heavy bleeding problem is fixed soon. So far I'm good, just a 1 day period of Monday, so refreshing to see healthy light pink color blood for a change ( - :

5/2012 Grade 2 DCIS, 2+cm extensive comedo necrosis. 0/4 nodes. 98% ER+/99% PR+. LCIS/ALH presented after NSBMX 7/12. TH/BSO 8/13. Dx LE arm/truncal 10/2015. Convert to prepectoral 6/20/16

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