Mirena IUD?

245

Comments

  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited October 2009

    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?

  • irish47
    irish47 Member Posts: 109
    edited January 2010

    Hi all, I am also not a young woman, am 47 and had surgery last Tuesday for IDC. The tumour is PR/ER positive and I will be having radation therapy and Tamoxifen. I have had the Mirena coil for 6 years, am on my 2nd one. I absolutely love it, it stopped my periods completely and I had absolutely no side effects. I have been advised to have it removed and have made the appointment for next Tuesday. I have read all the posts here and have done a lot of research. I suppose I know I am doing the right thing but there is some ambiguity around the whole area. Am I rushing into things by having it removed next week, or being absolutely reckless in hoping I could hang on to the Mirena?   Any advice appreciated.
  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited January 2010

    Irish ~ once my pathology was back and my tumor was er/pr + my oncologist told me to have it removed.  I think it is the right thing to do. 

  • irish47
    irish47 Member Posts: 109
    edited January 2010

    Alicia,

    Thanks for the reply.  Am going for my appointment later today.  It's so ridiculous to be upset over such a small thing like this in the overall scheme of things, and illogical. I hope that your treatment is going well.

    Cora

  • chalex
    chalex Member Posts: 131
    edited January 2010

    I was also using the Mirena IUD when I was diagnosed with BC this year. I was told to get the Mirena removed ASAP by my family Dr when I was diagnosed. I was also told about the hormones that help feed the BC by my oncology DR. I had the Mirena put in early April 09 and I was feeling the lump on my right breast in July 09. I swear it grew overnight. I also question whether my BC had anything to do with the Mirena IUD.....

    Diagnosed: Aug 4/09, IDC, 5cm, Stage 3, Grade 3, ER+,PR+, HER+

  • Adri96705
    Adri96705 Member Posts: 6
    edited January 2010

    I've been lurking here for a week now while waiting to see if I have IBC.  This thread motivated me to register and reply.  Reading what you all have posted about your BC and Mirena has me a bit freaked out.  I have had mine for two and a half years and started having breast problems after one year.  I've always been wary of hormoes, but my birth control options are very limited anyway.  Pills didn't work well for me (I puked a lot and then got pregnant) so my gyn thought a shot would be a bad idea as well, I tried a diaphragm but it would not stay in (hilarious, but ultimately ineffective), I have a severe latex allergy, so no condoms.  They have not wanted to do a tubal ligation because I was single and too young.  Now that I am married it sounds like my husband may have a vasectomy in his near future because I don't know what else is left.  I get my biopsy results on Monday, but either way I don't think I trust this method any more.

    Also, KBinCO, thank you so much for mentioning the weight gain and loss you experienced with Mirena.  I had been thinking that my weight gain over the last couple of years was probably due to the morphine, but it makes a lot more sense to me that it would be caused by the Mirena. (Plus now I have the hope that when I have it removed I will be able to start losing again!)

  • PATM8848
    PATM8848 Member Posts: 13
    edited February 2010

    Well ladies I was dx with DCIS in Nov had my lumpectomy on Jan 15th and on jan 11th I had my mirena removed. I was wondering if the mirena had anything to do with my cancer and I think it does, I have a family hx of breast cancer in my paternal grandmother and she was in her 80s when she was dx. I have several other female family members and I am the youngest (out of my aunts and cousins)of them and I got breast cancer. It seems kind of odd that I am the only one. I think I will get in touch with the fda and voice my opinion and maybe even an attorney because that may be what it takes to get someone to listen to us and take serious action and investigate this. I think we all have a legitimate claim and maybe the fda should pull mirena off the market until more studies are done to find out if breast cancer is a horid side effect.

    Pat

  • twigar
    twigar Member Posts: 2
    edited February 2010

    hi in  july 2009 i was diagnosed with BC ER+/PR+ grade 2 invasive ductal carcinoma. my primary lymph node had metametastis. i too had the mirena in for 3 years. again no history of cancer in the family. non smoker and drinker. fit and healthy. Two other friends also had the mirena one has BC the other Ovarian C. i was advised to have the mirena out immediatly. reading all your emails makes me think........ has the mirena been fully trialed. my sister was going to have the mirena and i have told her to talk to her doctor about a posssible link. she thankfully is not going to have it now. my other sister will not take hers out !!!!!!!!

  • makmak
    makmak Member Posts: 632
    edited February 2010

    Just chiming in.. I had a baby in November.. and a Mirena put in on Jan 09.  My lump in Nov was 2 cm and was told it's nothing.. on my follow up Ultrasound, the lump is 4.5cm and mets in the liver.. so they Mirena came out the Monday after diagnosis.. even though I am ER/PR- they didn't want to take any chances.. SO.. I'd like to hope it had nothing to do with it.. but I will always be left to wonder..

  • Ken3
    Ken3 Member Posts: 16
    edited March 2010

    Well girls I had the Mirena put in Nov of 08 had it taken out July 09 because of the constant headaches I had. My family docter suggested I have it removed. Around November 09 I felt a small lump on my breast and guess what.....had mammo done it came back DCIS 7 cm  and the lump I felt was IDC tumor 4 mm. I have no family history of breast cancer. Yes, I did think the Mirena had something to do with it. I ask my docter about it, he said it may have speed the process up. Anyway I'm just turned 37, I do regret ever having that thing in me! Because literally all it brought me was headaches and who knows what else.

  • PattyJo
    PattyJo Member Posts: 2
    edited April 2010

    Hey girls, looks like we have a trend.... I'm 46. I got the Mirena put in 9/26?/08 for excessive monthly bleeding, I found the 2cm lump 12/05/09. It showed up pretty sudden too. I was diagnosed w/ ER+/PR+ BC on 1/5/10. Got the darn IUD removed a couple weeks ago and I'm back to the heavy bleeding and just as I suspected (before finding you girls with the same complaint) I bought and paid for my BC on top of it with a Mirena IUD. So what are we going to do about it now? I'd get in on a class action suit too, if there was a way to find one started out there, but this is the closest I've come to finding others in the same boat. I just hope we all live long enough to benefit from to trouble. I'm so angry about this and have no where to turn.

  • pumpkins
    pumpkins Member Posts: 1
    edited April 2010

    I read about a study done years ago where they cut up pieces of IUDs (not Mirena) and put them in   mice.  And the mice grew a lot more tumors than the control group. They think it is just having a foreign body that caused the tumor (not necessary the hormones).

  • PattyJo
    PattyJo Member Posts: 2
    edited April 2010

    Wow Pumpkins.... If that is true then all these poor woman who have a mastectomy and reconstruction w/ implants can plan on breast cancer, again, anyways? People with joint replacement...... transplants....pacemakers.... don't believe it.

  • Jeannine99
    Jeannine99 Member Posts: 1
    edited April 2010

    I have also been diagnosed with breast cancer at 41 yrs old.  No cancer of any kind in any family members.  I have had a Mirena IUD for 6 years.  None of my oncologists have suggested taking it out.  After reading all these posts, and after chemo, it's coming out!  (I'm in the middle of chemo right now and don't want to start a possible infection by removing it.)   Would be willing to pursue the Mirena / breast cancer connection with anyone else willing.

  • bchusbandtexas
    bchusbandtexas Member Posts: 2
    edited April 2010

    My wife was diagnosed on 3/18/2010. 41 yrs old. Stage 2b, 2.5 cm, 2/27 lymph nodes. ER +,PR+, Mirena was inserted 2008.  Oncologist informed that it needed to come out before chemo. Her grandmother had ovarian cancer in her 90's.  Her  6 sisters and mother have no history of cancer. She was always in great health no smoking/drinking, ate healthy, active, and maintained a good weight.

     Though there is no proof,  from what Ive been reading in this forum it appears that their is some type of connection with mirena causing this.  This is disturbing.  There is a clinical study being conducted in Germany entitled Case-Control Study on the Breast Cancer Risk of Mirena Compared with other Contraceptive Methods.  http://clinicaltrials.gov/ct2/show/NCT00461253.  Does anybody know anything about the study?  

  • michelle249
    michelle249 Member Posts: 1
    edited May 2010

    I was just diagnosed with DCIS 2 weeks ago- one week before my 42nd birthday. It is intermediate grade. I will have breast conservation surgery next month, but I'm still waiting to hear the decision on full breast radiation.  

    I had a Mirena inserted in November of 2008. I know they say the hormones don't go outside the uterus, but I had mood swings, bloating, and breast swelling for about 2 weeks within the first month after it was placed. I do believe some women are more sensitive than others. I immediately started having HEAVY periods every other week. My hemoglobin dropped at one point to 5. During my hysterectomy in October 2009 the doctor was surprised to find a grapefruit sized benign fibroid in my uterus. We knew I had a fibroid, but not that it was that large.  Now, less than 18 months after my insertion, I have breast cancer. Like most of you, I have no family history of cancer. 

    I'm astonished to see how many  of us don't have a history and how young we all are. (Sorry Irish47, but you are VERY young.) The surgeon told me that the risk of breast cancer is 1 in 8. True, but that is for women over 85 years old- Not us under 50. I read statistics last night that say our risk is 1 in 217,000.  With those odds I should've won the lottery instead.  

    When I told the GYN about my breast swelling, he said, "It can't do that." Well. . . it did. Maybe my lack of prior exposure to hormones was the key. Prior to the Mirena I had a copper IUD. Worked well, but painful periods; I got it at age 30. Before that, I had not taken hormones since age 21. I only took Oral BCP's for about 4 years prior- from 17 to 21- stopped because they made me nauseated. The Mirena changed everything about how my body worked, and I will likely always believe it caused the cancer- or at least accelerated it. I have yearly mammograms- Clear in March 2009 but they found calcifications this year. 

    I agree with bchusbandtexas- seems like our major link is Mirena. I thought the Mirena was my saving grace. All the convenience of an IUD and the possibility of no periods. If I had known then that a period would be the least of my worries.  I don't blame Mirena. Lots of dangers aren't discovered until it's too late for lots of people. But I'm glad there is a study going on, so that if there is a problem it can be discovered to protect other women. 

    And, I'm so glad I'm not alone. Thanks for sharing, and good luck- all of you.  

  • ChristyKosh
    ChristyKosh Member Posts: 1
    edited May 2010

    Hey all.  I have not been diagnosed with anything, but I am headed off to the breast specialist on Thursday.  I am currently 33 yrs old.  I had my Mirena inserted in March/April of 2009.  I had weird tingles/light achiness starting around December 2009.... about 8 or 9 months after my Mirena insertion.  The weird feelings stood out enough to where I would comment to my boyfriend that I felt like something was inside my breast.  I could not physically feel any lumps at the time so I just disregarded it all.  I would forget about it and then would be reminded when it started feeling weird again every few weeks.  I never connected it with my cycle bc after the first few months of constant light bleeding, my periods stopped all together.  I never got my period so I never tied the two together.  A few weeks ago I was feeling the weirdness again and was finally able to feel a lump and thickness in my left breast.  I work for a GYN (not in her medical office, but for her animal rescue she is the director for) so she got me in right away to get them checked out.  I have 2 palpable lumps so they sent me for a mammo and US.  I have dense breasts apparently bc nothing was seen on the testing...not normal tissue in the lumps....no lumps at all are showing up, but the radiologist suggested an MRI to get a more thorough look since I have palpable lumps.  There is absolutely no history of breast cancer in my family and at 33 yrs old, I am not in the normal age group to get it.  I have had a weight gain and mood swngs since the insertion, but never tied those 2 things to the iUD.  Now I am wondering....  I am also quite concerned about the possibility of BC.  I want this thing out of me.... NOW.  After reading all your posts, I am going to research more info on a possible link.  If it ends up that I am diagnosed with BC,  personally would feel positive it is bc of the Mirena.  I have not been on birth control since I was in my early 20's bc my body was so sensitive to it...  It made my blood pressure skyrocket from a very low 110 to a very high 150!  They took me off of it as soon as they figured out that was the cause.  I was told as well that the low-hormone amount in the Mirena did not go through the blood stream, but I wonder now.  Since I was sensitive to it before, I bet I was sensitive to it now.  Well, I am going into the specialist on Thursday and will see if they order the MRI.  At this point, I hope they do bc I will not be able to sleep well until I have concrete proof that these lumps are ok.

     Good luck to everyone.  You will all be in my thoughts.

     Christy

  • Lilah
    Lilah Member Posts: 4,898
    edited May 2010

    I'll chime in and say: I had my Mirena IUD inserted in October 2005 and the calcifications they found in my breast during routine mammogram in March 2009 led to a diagnosis of DCIS in May 2009 and of IDC in June 2009... still in my 40s as well at the time.  I loved it for the lack of periods.  The minute I was diagnosed I had it removed.  It was the first thing I thought of as the reason for my BC.  My doctors also told me that Mirena IUD does not cause BC but I insisted on its removal.  Even the Mirena website says it is not recommended for women who have had BC, so certainly as someone diagnosed I qualified.  I am not ER or PR positive, but frankly since I also come from a family with no history of cancer of any kind, who knows if the Mirena is to blame?  I don't.  And I would submit that maybe no one knows for sure.  I can't and won't recommend it to anyone now.  It is a complete unknown and not worth the risk.  I regret now that I was too willing to use it then... perhaps I would not have gotten BC.  I'm content knowing it has been removed.

  • montana7p
    montana7p Member Posts: 20
    edited May 2010

    Wow. This post is so fascinating. I had my Mirena IUD inserted in May of 2006.  I was diagnoged with a fast-moving high-grade IDC in January of 2009 -- just before my 40th birthday.  I have no family history of BC and do not carry the BRAC genes. My OB recommended immediate removal of the IUD after my diagnosis.  It was one of the first things I thought of when I went down the list of "how could this have happened to me".  I know they say it doesn't, but I will always be left wondering if the decision to have that kind of IUD put in is what put me on a path I'd prefer not to be on.

  • bchusbandtexas
    bchusbandtexas Member Posts: 2
    edited May 2010

    I tried sending an email to the research group conducting the study in Europe and havent heard anything back.  We had the BRAC test conducted and it came back as negative for no mutant cells,  we still believe that Mirena had something to do with her BC.  My wife had her first chemo treatment last week.  I can't rest, seeing her so fatigued and aching thinking Mirena had something to do with this.   I'm going to follow up with the study group.   

    My thoughts and best of luck to all of you.  

  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited May 2010

    Girls, I fully believe that in 20 years Mirena and similar birth control will be 100% accepted as cancer-causing as surely as cigarettes are (and remember, doctors used to RECOMMEND smoking! Just because your doctor tells you with absolute certainty and authority "Oh, that doesn't cause cancer," doesn't mean he/she is right... until the research starts rolling in to prove otherwise). (One of my two friends who were diagnosed with IDC in their 30's used Mirena; the other one used regular birth control pills.)

    Honestly, I'm at a point where I am urging all my friends and family to not use ANY hormone-based birth control. I know the lure of them and believe me, I thought they were a God-send too. But convenience is NOT WORTH risking our lives for!!

  • Judea
    Judea Member Posts: 2
    edited June 2010

    Hi I am 28 years old and I found a large lump in my left breast it doesn't hurt. I have had the mirena for  four years. I noticed I have had discharge from my nipples but thought it was nothing. A few weeks ago I had a lump in my left armpit it has since gone away. I have an appointment tommorow to get the lump checked I am just really scared and I don't know what to do.

  • Twinmom77
    Twinmom77 Member Posts: 303
    edited June 2010

    I haven't read all the posts, but something to think about is COPPER.  Excess copper in your body can somehow (I don't know all the science behind it) lead to more estrogen (and effect your period among lots of other things), which for us ER+ girls is not a good thing.  I had considered Mirena about a year before I was diagnosed and I thank God that I didn't get it.  I had a hair analysis done and sure enough...high copper.  Now, a regular doc is sure to tell you the amount of copper in an IUD is not enough to cause any problems, but if you already have high copper and then you add more to it...???  Copper can be found in food, hot tubs, swimming pools, cosmetics, lotions, cleaning products so most people are probably overloaded to begin with.  Just my two cents!

  • Lilah
    Lilah Member Posts: 4,898
    edited June 2010

    Mirena IUD is not made of copper -- it's made of plastic.

  • Twinmom77
    Twinmom77 Member Posts: 303
    edited June 2010

    Well, then I'm glad I got rid of the obgyn that suggested it to me because she told me it released small amounts of copper!

  • Lilah
    Lilah Member Posts: 4,898
    edited June 2010

    Oh lol -- well maybe I am wrong then :)  My understanding was it's plastic and releases small amounts of progesterin; regular IDs are made of copper.

  • Twinmom77
    Twinmom77 Member Posts: 303
    edited June 2010

    No, you're probably right,lol.  There's a reason I'm not with that doc anymore!  But shame on me for not doing more research on it when she wanted me to try it!

  • caddyusa
    caddyusa Member Posts: 4
    edited August 2010

    I was diagnosed at 35 years of age and one year  and a couple months later after I had mirena inserted, I always had that thing in the back of my mind if mirena had something to do with my Breast Cancer,my doctors  said NO ,but I have been search  the side effects of mirena and I realized that the fatigue , mood swing  and many other symptoms... was mirena , so now I found out   a law suit going on and if u think that mirena has something to do with your cancer you should  report to FDA and check  mirenalegalhelp.com 

  • Kip
    Kip Member Posts: 1
    edited September 2010

    Hi Everyone,

    I hope it's ok that I'm writing because I'm over the age limit (45), but I wanted to join the IUD conversation. In September of 2009 I had a Mirena IUD inserted and this past August I was diagnosed with locally advanced cancer in my left breast (with "questionable" cells in the right). No history in my family, I'm an otherwise very healthy person with no risks other than I never had children. This cancer came fast and furiously. Like many of you, after diagnosis, my oncologist wanted me to get the IUD out immediately.Thanks bchusbandtexas for the info on the German study, I see that should be completed next month and hopefully we will know more then. After reading your posts, adding up my risk factors and seeing the looks on doctor's faces, I'm increasingly convinced that my Minera might be the cause of this nightmare. Thanks for this blog...it's really helpful. 

  • Alice100
    Alice100 Member Posts: 16
    edited September 2010

    I forgot about this!  I was diagnosed with my ES/PR+ ILC in March this year at 40 but they figure of course that it started a couple years earlier...at 38 or so....I had the Mirena implanted just before then.  YIKES.  And no one - not even my breast surgeon, Chemo Onc or my Dr. have said anything.  As soon as I read this I called and made an appointment with the Dr. for next week.  I want it out ASAP.

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