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Topic: Mirena IUD?

Forum: Young With Breast Cancer —

Connect with those under 40 who have been diagnosed.

Posted on: Jun 2, 2008 02:56PM

jmfl wrote:

Hi, I am new here. I was diagnosed last week with DCIS, grade 1. I am about to go to my first appt, some kind of cattle call thing where they bring in all the women who were diagnosed last week and we rotate through meetings with surgeon, radiologist, plastic surgeon, etc.

I don't technically "qualify" for this group because I am about to turn 41 but due to a family history of late menopause, I expect to need to continue to use birth control for 10-15 years.

Here is my question. I had a Mirena inserted after the birth of my 4.5 year old daughter (I also have a 6.5 year old son). I love it! After a few months of spotting I never had another period. I was planning on getting another when this one "expires" next year. So I was shocked to discover that Mirena is not recommended for women with breast cancer. But there is no indication that Mirena causes breast cancer. Isn't that contradictory? Even more confusing, if I am put on Tamoxifen, then a Mirena is recommended?

So what should I do? Should I have the Mirena taken out? If I do, I'm probably going to have to have my tubes tied as I don't want to take any chances on pregnancy. That just is not something I want to have to deal with right now.

Anybody else have a Mirena when you were diagnosed? 

Dx 5/28/2008, DCIS, 2cm, Stage 0, Grade 1, 0/2 nodes, ER+/PR+
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Jun 2, 2008 03:10PM LorenaB wrote:

JMFL, I believe that all hormonal methods of birth control are discouraged because they "feed" the cancer (very unscientific explanation; perhaps someone can describe it more accurately!).  I'm not sure if it is equally important if your cancer is negative for hormone receptors.  I am ER/PR+ and was told to stop my birth control pills immediately upon diagnosis.  I am considering a traditional (non-hormonal) IUD, since I was told that the Mirena is not a good option.

BTW I am 41 as well.

Dx 12/20/2007, IDC, 1cm, Stage II, Grade 3, 1/11 nodes, ER+/PR+, HER2-
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Jun 2, 2008 10:23PM jmfl wrote:

Thanks for responding, Lorena. The oncologist told me to leave the Mirena alone until after my surgery (probably last week of June) when they will test for hormone receptors. I'm pretty overwhelmed right now so it is good to be able to wait on that for a few weeks.

Dx 5/28/2008, DCIS, 2cm, Stage 0, Grade 1, 0/2 nodes, ER+/PR+
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Jun 2, 2008 10:35PM kes wrote:

JMFL,  I had bilat mastectomy on Jan 25/08. I also am having problems with heavy and prolonged periods and the merena(sp?)iud was an option for me but now that my BC came back er/pr+ the OB-GYN tells me that this is not an option for me. The only option I have is a uterine ablation for the heavy periods.


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Jun 2, 2008 10:44PM maryannecb wrote:

I am er/pr negative...had one at diagnosis...had it changed last year. I love it.

Fists up! Dx 9/20/2005, IDC, 6cm+, Stage IIIA, Grade 2, 2/14 nodes, ER-/PR-, HER2+
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Jun 4, 2008 10:26PM BethNY wrote:

if you are ER + you will have to have it removed.  But if you're ER neg, then your onc may allow you to keep it.

There's two reasons you can't have it on Tamox-- one, b/c it has hormones that can fuel cancer, and two b/c tamox can cause uterine bleeding, as will the IUD, and there is a VERY small risk with tamox of uterine cancer, but having an IUD could get in the way of diagnosing that.

Your onc will guide you on the right thing to do.  If you want another kid one day then you can always use condoms.

If you're done having kids, then you might want to bring up the idea of a vasectomy to your husband-- its much easier and safer.

Be your own hero
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Jun 9, 2008 03:24PM Alli wrote:

I was on the pill when diagnosed and was told to stop it.  My OB doc wanted to place a Mirena IUD but my onc would not ok it.  I ended up having the copper IUD inserted, it contains no hormones.  My periods are a little heavier than before but still bearable.  Maybe this is an option for you.


Dx 11/2/2006, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/28/2007 Whole-breast: Breast Dx 11/8/2016, DCIS, Left, Stage 0, Grade 3, ER+/PR+, HER2- Surgery 1/5/2017 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 21, 2008 10:21AM Psych7 wrote:

I had a mammogram in November 2007 and it was clear.  I have a history of normal mammograms.  In December 2007,  I had the Mirena IUD inserted.  Six months later in June 2008, I was diagnosed with a Stage 3  4 cm. invasive ductal carcinoma  E/P+ with numerous lymph node involvement.  While I continued to have the Mirena in my body the tumor grew 2 more centimeters.  The surgeon and oncoIogist were stunned at how aggressively this tumor was reacting in my body.   I have always exercised and have always been a healthy eater.  Breast cancer does not run in my family.  I am the first one to have breast cancer.  I have had combined chemotherapy (Lupron, chemo and Avastin), and the Mirena removed.  I am happy to say that after 2 chemo and 1 Avastin treatment, the tumor is now 2 cm. and there is only 1 lymph node involved.  I have a couple more treatments to go before surgery.  I DO NOT recommend the Mirena IUD or ANY hormone releasing contraceptive. 
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Oct 1, 2008 08:41PM patriceC wrote:

I agree with Psych7 about the use of hormones. I did not follow my own rules about not manipulating what nature intended. After my child was born, I had the mirena placed because I thought it was going to make my life of painful and excessive bleeding with my periods improved. About a year later my breast became sore and I felt a lump there.I had a mammogram and ultrasound that showed one of my lymph nodes was big, but I was told to come back in a year. Upon returning 10 months later( i felt the lump was bigger), I was told that there is a suspicious mass there that needs to be biopsied (seems to be beside the lymph node). I have had the mirena in for 2 yeras and four months now. I first felt this after 16 months of use.  I should have removed the device then. I can't help but think the worst and I intend on getting the device out first before I do anything else.

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Dec 2, 2008 04:37PM - edited Dec 2, 2008 04:40PM by yf010

I am a big doubter on hormone-related products myself. I have a question for Psych7 and patriceC. The levinorgestrel (a kind of progesterone) in Mirena is so low that the hormone theoretically should not be absorbed in your blood stream. It's supposed to be only affect within your uterus. Pills, on the other hand, would be a lot more suspicious because the hormones are pumped into your blood daily and thus influence your body systematically. How does the low does of levinorgestrel in Mirena increase the chance of BC? Please advise. Thank you.

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Dec 3, 2008 10:27PM PSK07 wrote:

I'm seriously not young enough for this group (I'm 47), but had a discussion with a gynecologist last January about my cycles. I'm still very premenopausal & I can't persuade the husband to get the V and have had some horrific cycles since a rapid stopping of BCP 18 months ago with the BC dx. BCP are a definite no-no because of the hormone levels.

the doctor brought up Mirena for the reason you state- low levels of levinorgestrel that don't circulate in the blood. It is used in the UK to help with tamoxifen SEs....but the FDA label here says it's contraindicated if you've had BC.  I'll see the oncologist again in February and will talk to her.  It's all a mystery/confused mess.

Pam - adding LCIS & ALH to the mix, 8/25/08 Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Dec 3, 2008 10:38PM pk0199 wrote:

I too have a mirena iud. I had it inserted  not for birth control but to try to help with endometriosis, that was Sept 07. Sept 08 was diagnosed with BC. Unfortunately my BS does not want to answer any questions (l had the option of a really good surgeon or one with a great bed side manner, think l got the good surgeon!) so have been waiting to see the onc, again unfortunately l will only be seeing a radiation onc so not sure how much this will help me. Back to the point, l too wonder about the correlation between BC and the mirena, yet have read articles on how it helps with tamoxifen SE's too. Very confused!

l see the rad onc tomorrow, if l get no answers there, l guess it is back to the ob/gyn.

Glad to find this thread though, don't feel so alone with this issue.

Be kinder than necessary, for everyone you meet is fighting some kind of battle. Dx 9/23/2008, DCIS
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Dec 4, 2008 12:09PM yf010 wrote:

I did a search on Mirena at Medhelp.org.  Some Mirena users complain about weight gain and mood swings.  Two or three mentioned breast tenderness or discomfort as well.  They all attributed to Mirena.  Don't know their age or specific conditions.  BC is a hormone-sensitive cancer, but is it sensitive enough to react to even local effective hormone in Mirena?  Or the official literature missed something?

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Dec 12, 2008 07:17PM pk0199 wrote:

Saw the ob/gyn yesterday about my mirena. Wish l could tell everyone lots of good news, unfortunately l can't. No real bad news though. My doc is going to leave the mirena in place until we find out if l am hormone + or -. Even then, she feels comfortable leaving it in until after my rads are done. She doesn't want me to have to deal with rads and the problems l would have if they took the mirena out. Not using if for birthcontrol but to control endometriosis and pelvic pain. She is going to do some reading to see what the Europeans are doing with mirenas and breast ca as they have been using mirena iud for almost 25yrs. When l get more info , l will share it with you.

Be kinder than necessary, for everyone you meet is fighting some kind of battle. Dx 9/23/2008, DCIS
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Feb 11, 2009 11:58AM patriceC wrote:

In response to your question yf010,you are right that the low doses of progersterone should  THEORETICALLY not enter your blood stream. The problem with this is that nothing can be 100%. We each have our own sensitivities to medications and ability to absorb more drug than others. If the progesterone is not getting into your blood stream, then how do you explain symptoms associated with the product that it should not cause? Those symptoms aren't related to hormones in the uterus (mood swings, breast tenderness, weight gain for example).

Look at the FDA product information report on Mirena and you will see that the difference with mirena vs the implant norplant and an oral contraceptive is purely that the Mirena doses released in the blood are less than the other products. There is a constant low level of the progesterone drug in the blood with mirena, versus peaks and troughs associated with the pill or the implantable progesterone device. There is a clear contraindication in women with "known or suspected carcinoma of the breast".

The document can be found at www.fda.gov/medwatch/SAFETY/2008/May_PI/Mirena_PI.pdf

So far, there have been reports of people being diagnosed with breast cancer who have used the mirena product. There is no proven link between the two, but that will be diffucult to prove in any event. It will take years of women being reported to have cancer who have used the product and someone taking the time to put the pieces together to find a strong link.  We all need to do our own homework, and satisfy ourselves that we are comfortable with the information we have been given. If after you read everything and you are OK with leaving it in, then leave it in. If not, then take it out.

I hope this helps. As an aside, I feel much better with the device removed-so it was the right decision for me. We need to be own own advocates and not soley rely on the information being given to us. After all, doctors are humans too - they don't know it all and they can make mistakes. We need to take responsibility for ourselves.

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Feb 11, 2009 05:17PM BethNY wrote:

patrice thanks for posting such a great response. I agree 100% with everything you wrote.

I think for any young women who are dx with BC, finding the right birth control is tough, b/c the options are very limited. But, knowing that maybe the best choice isn't the most convenient, but also poses no risk of kick starting any cancer cells again, is a big part of the decision.

Be your own hero
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Feb 13, 2009 06:35PM patriceC wrote:

Thanks Beth, that's so true- most convenient doesn't mean best!

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Feb 13, 2009 09:43PM Mary22 wrote:

I was just DX with DCIS micro invasive, ER- PR+. My radiation oncologist was the first to suggest removing my Mirena. I talked with the surgeon today and the Medical Oncologist both also suggested removing it. It will be removed in a month( earliest appt I could get. ) The Medical Oncologist did look at side effects and contradictions,for Mirena, it did show that women with breast cancer should not use Mirena. However with my age 38(at the time Mirena was inserted) and the risk of blood clot strokes, Mirena was the safest for me, also less bleeding(my iron counts were low). I am now 41

Mary K. BRCA2+ Dx 12/4/2008, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR+, HER2-
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Feb 17, 2009 06:47PM - edited Feb 17, 2009 06:49PM by samiam40

I have a copper Paraguard (no hormone) IUD.  I have had it for 3 years and dislike it because it causes my periods to drag on and on with periodic spotting for weeks.  My recently diagnosed cancer is ER+.  I wonder if I wlll be asked to have the IUD removed since, as a prior poster mentioned, IUDs cause spotting that could interefere with the diagnosis of uterine cancer.  Has anyone been in this position?

Dx 1/12/09 @ age 40, IDC 2.6 cm, Stage 2a, Grade 1, 0/10 nodes, ER+/PR+/HER2-, Onco 14, BRCA neg. Bilat mx w/TEs 2/3/09. CMFx6 3/2-6/15/09. Zometa 5/09-9/10. Tamox 7/09-present Exchange w/gummy bears 9/9/09. N/A recon 12/16/09.
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May 11, 2009 06:27PM Debbie134 wrote:

I have a Mirena (7 years) and was diagnosed with BC, progesterone receptor positive.  Age 47, pre-menopausal.  Onc did not seem to know that there was a contraindication, but I had already made an appointment to get it OUT when I leared i had this diagnosis. 
Dx 4/13/2009, IDC, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2-
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Jun 4, 2009 01:26AM - edited Jun 4, 2009 01:27AM by kmn0701

I also had a Mirena IUD. There is NO history of BC in my family & yet somehow I was diagnosed with it. I had the IUD in for about two years & found my lump maybe 4-5 months after having it removed. I don't know but I'll tell you one thing....I will NEVER get another Mirena or EVER recommend one to anyone.  I am/was 38 at diagnosis.

~Kristine Dx 11/18/2008, IDC, 6cm+, Stage IIIA, Grade 3, 2/14 nodes, ER-/PR-, HER2+
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Jun 4, 2009 12:48PM mom2twins wrote:

I had a Mirena IUD and had it removed as soon as I was dx.  None of my docs feel there is a coorelation, but I wanted anything foreign gone ASAP once I was dx.  This thread makes me feel even more confident in that decision.

Mary Dx 3/23/2009, IDC, 1cm, Stage IIA, Grade 3, 2/14 nodes, ER+/PR-, HER2+
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Jun 4, 2009 02:14PM lilablue wrote:

Hello all,

I also had a Mirena IUD at the time of diagnosis (was/am 35 years). My onc left me the option to keep it. For homone receptor cancers here in France, some onc's decide to remove it, some others leave the decision to the patient. I decided to get rid of it because I did not want any foreign object that is hormone related in my body. My onc is suggesting to put me a copper (no hormone) UID. Any experiences?

Totally agree with Patrice C post. We need to be our own advocates and take responsability for ourselves

Dx 9/3/2008, ILC, 1cm, Stage IIA, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jun 4, 2009 08:52PM Jaimieh wrote:

I also had a mirena when I was diagnosed with BC.  I had it for 2 days after I was diagnosed and I demanded an appt. on Dec. 26.  I wanted it out and THEN.

Dx 12/24/2008, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ Dx 3/25/2014, IDC, Stage I, Grade 3, ER-/PR-, HER2+
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Jun 5, 2009 01:54AM cil326 wrote:


I had Mirena when I was diagnosed, eventhough my tumor is ER-/PR-, right before starting chemo, my oncologist ordered for me to go to my GYN to exchange out the IUD, I had the Mirena taken out and the Paragard (copper only) put in.  Mirena releases small amount of estrogen thru out the cycle, my oncologist said she didn't want to take any chance.


BLM w/TEs 11/24/08, TCH x 6 1/15/09, finished 5/4/09; exchange surgery 6/4/09; Herceptin every 3 wks until Christmas. BRACA- Dx 10/2/2008, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2+
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Jun 15, 2009 05:40AM - edited Jan 6, 2015 04:47AM by Mzmerz

This Post was deleted by Mzmerz.
Dx 6/12/2009, IDC, 3cm, Stage IIB, 12/19 nodes, ER+/PR+, HER2- Surgery 7/8/2009 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 8/7/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/3/2010 Hormonal Therapy 2/22/2010 Surgery 5/8/2010 Prophylactic ovary removal Dx 3/22/2012, IDC, Stage IV, metastasized to bone, 12/19 nodes, mets, ER+/PR-, HER2- Radiation Therapy 3/27/2012 Hormonal Therapy 5/1/2012 Femara (letrozole) Targeted Therapy 7/15/2016 Ibrance (palbociclib) Dx 11/2016, IDC, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- Hormonal Therapy 3/3/2017 Faslodex (fulvestrant) Chemotherapy 5/23/2017 Taxol (paclitaxel)
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Jun 17, 2009 03:22PM KBinCO wrote:

Good afternoon. In January 2009, at the age of 38, I was diagnosed with Stage 0, DCIS, intermediate to high grade, ER/PR+ breast cancer. Additional findings in my pathology report included background proliferative fibrocystic changes with a small fibroadenoma. There had been no history of breast cancer in my family up to this point.

My radiation oncologist suspects that the Mirena IUD, which I had inserted 3+ years prior could have been the cause of my breast cancer. Of course, there is no proof.

I had it removed a few weeks after my diagnosis and lost 20 pounds in 4 weeks. I am back to my normal weight and have never felt better. I had started gaining weight immediately after insertion, but didn't make the link to the IUD as I have always trusted that the IUD was safe - I mean, they wouldn't put it on the market if it wasn't, right? Well, I am a little older and a little wiser and I believe it isn't safe. My suspicion is if your breast cancer is fueled by ER/PR (as mine is) any type of additional synthetic hormone, like the progesterone in the Mirena IUD, isn't good for you.

I don't recommend the product to anyone.

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Sep 15, 2009 10:17PM Presley26 wrote:

I was diagnosed with breast cancer in June 09.  I had a Mirena IUD inserted in the fall 2008.  I am 38 years old, no family history of breast cancer or any cancer for that matter, breast fed both my children, don't over indulge in alcohol, non smoker and I'm a fitness instructor so I'm very much in shape....the only link to breast cancer that I can see is the hormone in the Mirena.  My cancer is HR ER positive, which means my ovaries are producing too much estrogen; perhaps a reaction to the progesterone from the Mirena????? 

I am confused why the medical community stopped giving hormone replacement therapy to women over the age of 35 because of the health risks involved, yet Mirena is a hormone and they claim it to be safe.

I am convinced the Mirena is the reason behind my breast cancer and I would not recommend it to any woman over the age of 30.  Stick to the old fashioned IUD which I had for many years and had no problems with.  I was taken in by my family doctor with the 'no more periods' on the Mirena....if it's too good to be true...then maybe it is. 

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Sep 22, 2009 09:34PM annag39 wrote:

I am 39 years old and was diagnosed in May 2009.  Stage 1, IDC, .8 cm, low grade, ER +, HR -, no nodes involved.  I asked this question to ALL my docs, and they have all told me no, it's not relevant.  The day I received the news of my test results, I kept going through everything in my mind, trying to figure out what caused this.  We have no history in our family of breast cancer, and suddenly a light bulb went on!  I had the Mirena IUD inserted in Feb '08.  I found my lump in Feb '09.  Too coincidental for me thank you.  Read the suggestion from the FDA, Mirena states NOTHING about bc on their website.  Just my 2 cents
Dx 5/2009, IDC, <1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Oct 4, 2009 09:31PM kimbrca wrote:

I, too, had a Mirena IUD at diagnosis of bc.  Age 36 when diagnosed, June 2009, ER/PR +, Herceptin -.  In fact, it was my second Mirena...kinda wondering if it caused my cancer.  After reading these posts, maybe I have found the answer.  I asked my oncologist if I should have the IUD removed and she said to ask my gyn.  The gyn said to get to her office that day!  wow, makes you wonder.  I absolutely LOVED my IUD, that's why I got a second one after 5 years.  As someone stated earlier, too good to be true. 

Dx 6/22/2009, IDC, 1cm, Stage IIA, 2/10 nodes, ER+/PR+, HER2-
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Oct 8, 2009 07:16PM JustmeAlicia wrote:

WOW - I too had a Mirena IUD put in place 3 years ago.  Now at 42 I just had breast cancer and a bilateral max.  My IUD is being taken out next week by my gyno, my breast surgeon wants it removed asap.  Who knows if it caused my breast cancer but it certainly may have fueled it's growth as it was est/prog +. 

Is anything safe?

BLMax with TE's 9/29/09 Chemo X8, Tamoxifen 5 years - 2 down, 3 to go ! Live LIFE .... Dx 8/27/2009, IDC: Mucinous, Right, 4cm, Stage IIA, Grade 3, 0/10 nodes, ER+/PR+, HER2-

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