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Anyone use Copper/Paragard IUD?

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nem126
nem126 Member Posts: 37
edited September 2019 in Young With Breast Cancer

Anyone on Paragard IUD? If so, what has your experience been? I've heard the insertion is painful, and that periods become heavier. I don't really have a choice though, since I am ER/PR+. Not a lot of options.

Just had my lumpectomy a few weeks ago, now I am waiting on the oncotype to see if I need chemo or if I can just go right to radiation and tamoxifen.

I am 32 years old. No children. I've been on the low hormone BC pill for years and I plan to keep taking it until someone explicitly tells me I have to stop... which I am assuming will come at my first meeting with my MO in a few weeks.

Any advice or personal experience with the copper IUD/paragard is welcome. Thanks all.

Sarah


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  • lee9
    lee9 Member Posts: 1
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    I am 37 and have been using the copper IUD/paraguard- had it placed 6.5 years ago. Made this choice because of my strong family history of breast cancer. Was diagnosed 2 months ago anyways...

    I think that the insertion was uncomfortable, but I honestly don't remember too much at this point (which is good news, right?). My periods last a bit longer (extra day or 2 of light spotting on either end) and mid flow is a bit heavier than it was previously... but I got used to it...

    good luck!

    lauren

  • nem126
    nem126 Member Posts: 37
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    Thanks for replying Lauren! Hopefully the IUD won't be a big deal. It is what it is. It's all I can use so I better be ok with it!

    Sorry to hear about your diagnosis. Looks like we were diagnosed around the same time (also 2 months ago for me). It stinks going through this in your 30s bc there is so much other crap you have to take into consideration. It's been hard to find people I can relate to. This community has been helpful.

    Sarah

  • Falconer
    Falconer Member Posts: 801
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    Sarah, I tried the paragard after my second child was born. I was 32, but since I'd already had two kids not sure we are in the same situation. Bc my mom had breast cancer I wanted to stay away from hormones. Well my experience was pretty bad- I bled for two weeks pretty heavily and really only had a two wk window of no period. I gave up on the IUD after less than a year.
  • nem126
    nem126 Member Posts: 37
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    Hoping that doesn't happen with me. I don't have a choice though either way. No kids, clinging to some faint hope that we'll be able to have kids when I'm off the tamoxifen.

  • nem126
    nem126 Member Posts: 37
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    I think I will give it a shot for 6 months and if it sucks I'll get it taken out. Then it's condoms only I guess. Which is a little risky.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    I'm wondering about this too. I was diagnosed recently and they told me to stop taking the pill immediately, but when I mentioned the copper IUD the doctors looked at me like I was weird! I'm about to start the egg-harvesting process (I'm 36) and that doctor seemed confused when I asked if it was okay to get the IUD now, I guess because usually her patients in the fertility clinic aren't normally concerned about getting pregnant...

  • el_tigre
    el_tigre Member Posts: 453
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    I am signed up for a paragard IUD this ext Friday during a procedure so I'll be "out" when they will be inserting it. I am hoping that since I am on Lupron shots I won't get the cramping and heavy bleeding associated with this type of IUD. If it sucks I'll fall back on diaphragm i guess ..ugh

    Anyone concerned with the copper aspect? I see that everythig causes cancer these days and the copper leaves me uneasy

  • FarAwayToo
    FarAwayToo Member Posts: 79
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    I wanted to bump this thread. I'm recently diagnosed, undergoing neoadjuvant chemo right now. I've had copper IUD (Paraguard) since February 2015 (so 2.5 years prior to my diagnosis). No hormonal birth control ever - we used condom and calendar method until decided we didn't want any more children and needed something more permanent. My MO was pleased when I told her this was my contraception method. However, I'm reading that increased levels of copper may be linked to higher risk of cancer spread, and it's hard to say if copper IUD raises the level of copper in the blood. So, I'm with El_Tigre here on copper concerns. Anybody have any insights?

    As far as my experience, it's been good. I did have heavier periods for about 3-4 cycles, but then they settled back to normal. The only unusual thing was that some months my period would be preceded with 2-3 days of spotting. I'm a little confused on the whole birth control thing with hormone positive cancer. Since we wil

  • JeniferT
    JeniferT Member Posts: 1
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    I am 31 now. I was diagnosed last april with stage 3 breast cancer. I've had four kids and about 8 years ago between the 2 and 3rd I had the iud put in. All heredity tests came back negative so they can't give me an answer to how it happened. Worried it might have something to do with the iud. Never used any other forms of contraceptions other than that and getting my tubes tyed after number 4. If anyone has any ideas would be happy to hear them.

  • salamandra
    salamandra Member Posts: 745
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    Jenifer, the copper IUD is recommended for patients with breast cancer because they believe it has absolutely no additional risk of breast cancer. Most women who are diagnosed with cancer don't have a genetic component or family history. It's just a thing that happens.

    I had a copper IUD first. My periods got long and heavy and stayed that way. Apparently for a subset of women, our periods get worse and stay worse, for most women their periods get worse but then go back to normal after a while (6 months - 1 year), and then for some women their periods actually get lighter on the copper IUD.

    I switched to the hormonal IUD and had it for a while, had it taken out to freeze eggs. The day I went to go get a new one put in, the gynecologist found a lump on my breast exam. It turned out to be ER+/PR+ cancer, and all the doctors were saying I should get the IUD pulled out. I put off the decision until I got to meet with my medical oncologist, and when I discussed it with her, it turns out it's not based on actual studies of any kind (like it is for estrogen based birth control), just the general principle that you shouldn't have exogenous hormones with a hormonal cancer. She checked with the oncologist gynecologist who confirmed it didn't pose an increased risk of blood clots (like estrogen-based bc does) that would be dangerous in combination with the tamoxifen. In the end, she recorded in my chart that we discussed that the medical recommendation was for me to remove the IUD, and I was informed of that and refused. She said the gyn onc told her that she has other patients on the hormonal IUD too.

    All this to basically be here for future readers, and to say that I really don't think a non-hormonal IUD could be a factor at all. That's what they were wanting me to get.

  • mazik
    mazik Member Posts: 1
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    Just wanted to say that I had stage 3B breast cancer and my oncologist was glad I had the non-hormonal Paragard IUD already in.  My gynecologist told me this morning that she doesn't think I need it anymore since I'm in medical menopause (triple positive dx in 2016 at age 39) but I'm going to run it by my oncologist since I don't want a surprise kid :)  A 9 & 12 yr old are good enough.

  • 32B
    32B Member Posts: 186
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    Hi ladies,

    I was happy to find this thread, since I'm about to start Tamoxifen and debating getting the copper IUD. I've heard the heavy period thing is no fun, and I'm also nervous about the potential for copper poisoning. Anyone who's been on the IUD for a long time have any pointers?

  • FarAwayToo
    FarAwayToo Member Posts: 79
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    32B, I no longer have my Paragard as I got oophorectomy a year ago, so that I could take letrozole (didn't want to do Lupron for ever, and was for sure done having kids). So, I won't be able to comment on Paragard experiences with Tamoxifen (which I never took).

    However, I've had it for almost 4 years. Heavy periods lasted maybe first 5-6 months. There was a bit more cramping even after they got back to normal, but mostly I forgot I had it. As far as copper poisoning, I saw a naturopathic doctor once I was done with active treatment, and she was up in arms about my IUD. I told her I was getting it out as soon as I had my ovaries out. She ran a copper level test on me, and it came back pretty low. Definitely well within normal range, and even lower than she thought was acceptable.

    I looked into how much copper the IUD actually has, and ran some calculations. Even if it leaches its entire weight in 5 years the amounts reaching your blood are negligible. So, I wouldn't be terribly concerned about that aspect.

    I was very paranoid about losing the IUD (yes, that happens sometimes), so I was religious about checking the strings. Did it every month once the period was over.

  • 32B
    32B Member Posts: 186
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    Thanks! That's really helpful! Hugs to you.