Progesterone and Estrogen receptor positive

JNN
JNN Member Posts: 8
edited October 2017 in DCIS (Ductal Carcinoma In Situ)

I am 37 years old and I am a breast cancer survivor of 4 years now. I was diagnosed with DCIS in 2013 and decided to go with a double mastectomy as my form of treatment. I am estrogen AND progesterone receptor positive which is where my question comes into play. I decided after all my treatments and recovery time, that sadly kids were just not in my future. So i decided to go on birth control which is something i have never been on. I was told by my dr that it needed to be hormone free, so i decided to go with Paraguard; however, I am starting to feel like i might have a hormonal imbalance. What do people do if their hormones are out of wack but can't take hormone supplements? Or does birth control being "hormone free" not mean i cannot take hormone supplements? I have my annual appt coming up in a few months and will address this with my GP, but i'm just curious if anyone out there has any input.

~J

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Comments

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    JNN, I can tell you about my experience. I had my dcis diagnosis and treatment when I was 38. As you can see from my sig line, I was receptor negative; which meant there was no recommendation for hormonal therapy for me. Regardless, no doctor I have ever seen has been willing to put me on anything resembling a "hormone supplement". Even when I had really really bad menopause symptoms. I bought some high quality black cohosh for my self (phytoestrogen). When I let one of my providers know, he told me to STOP it immediately. Same response from anyone else I've ever seen. I did stop it after awhile, but found it really helpful when I took it. I took their adamant recommendation under advisement, but honestly, the hot flashes and moodiness were awful, so I did what I needed to at the time.

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  • JNN
    JNN Member Posts: 8
    edited August 2017

    Thank you for sharing your experience! So in short are you saying when there's any issues with an imbalance of hormones (with BC survivors), that we're just supposed to deal with it?

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    um, that has been my personal experience. Not sure that matches anyone else's. sorry

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  • candles1
    candles1 Member Posts: 77
    edited August 2017

    This has been my experience too...I have been offered antidepressant-type medications that supposedly work well for hot flashes, but no hormonal therapy whatsoever. I have a hot flash just about every hour, 24/7/365, since I also had a hysterectomy several years ago and have no ovaries. I usually get no more than 2-3 hours of sleep at a time, even on cool nights, due to the hot flashes.

    Still, I'm not willing to go down the antidepressant medication path. So, I just deal with the constant hot flashes. I hope they peter out one day, but they have not diminished one bit since I was forced off HRT when I got the DCIS er+/pr+ diagnosis. In fact, this summer they've intensified due to the heat.
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  • JNN
    JNN Member Posts: 8
    edited August 2017

    Thanks candles1 for also sharing your experience. I hope my signs aren't issues of pre-menopause just yet as i'm only 37, but there's something definitely off.

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited August 2017

    Have your GP check your thyroid. I had terrible night sweats when my thyroid was off

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  • JNN
    JNN Member Posts: 8
    edited August 2017

    I'm experiencing no symptoms of premenopause...thankfully. I had a full panel including a T4 done a year ago with normal parameters but no hormone testing was done as the testing was just for a baseline. I'm leaning more towards the possibility of PCOS which if that is in fact the case, women are typically put on some type of hormone treatment...which is my concern.

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  • kittenknit
    kittenknit Member Posts: 9
    edited October 2017

    I've seen Chinese medicine (acupuncture and herbs) be really effective for ob/gyn issues.

    Although I am ER/PR+, neither surgeon I've seen was concerned that I take ERT and Vagifem. I didn't really understand their explanations beyond that they don't think it has much of an effect on DCIS.

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  • JNN
    JNN Member Posts: 8
    edited October 2017

    When you say they weren't concerned, are you saying that if it came down to you having a hormonal imbalance that taking hormones would be ok whether it be creams or pills? I definitely should have asked more questions when meeting with my oncologist awhile back because initially i was told that after a mastectomy my chances of cancer again would be just the same as someone who didn't have breast cancer. But then i was told my birth control had to be hormone free which doesn't make much sense if i'm now part of the population of 'non-cancer' society. Ugh. Thanks for your input though...greatly appreciated.

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