Mirena IUD?
Comments
-
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?
-
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.
-
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.
-
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.
Kerry
-
I am er/pr negative...had one at diagnosis...had it changed last year. I love it.
-
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.
-
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.
Alli
-
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.
-
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.
-
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.
-
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.
-
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.
-
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?
-
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.
-
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.
-
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.
-
Thanks Beth, that's so true- most convenient doesn't mean best!
-
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
-
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?
-
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.
-
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.
-
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.
-
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
-
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.
-
JMFL,
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.
Cil.
-
I just received dx last week and have had a Mirena for almost 2 years. I had wondered if it could have caused any of this, as no one on either side of my family has BC or any cancers at all of any kind. I see a surgeon in Seattle next week and will find out all the stuff I didn't know I needed to know. So much to remember. Gonna have to get a notebook. Hopeing to avoid Chemo. I don't mind losing my hair, I just cannot stomach throwing up, pardon the pun.
-
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.
-
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.
-
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
-
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.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team