DCIS, receptor positive and still on HRT. How risky is this?
Hi everyone. Never thought I would be spending my holiday break talking and researching cancer. Yet here we all are.
I was recently diagnosed with DCIS and receptor positive for both ER and PR.
I had a lumpectomy on 13 Dec 2024 and was advised I need a further one (scheduled 22 Jan) as they didn't get clear margins all around.
Thing is, I have been on HRT for the last 3 years or so as my perimenopausal symptoms were horrendous. Hrt gave me my life back. I also have a mirena (about 10 years) and started taking 100mcg progesterone about 1 year ago too.
I'm scared to come off any of it, and then go on hormone blockers on top of that. Side effects are likely going to be unsustainable.
Given that I am receptor positive…am I taking too much risk here though. How do I weigh up options? Is anyone else in the same situation? Or has been and now has advice given hindsight? I'd love to hear your thoughts.
Comments
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Hi @valuedlife25, Before you can make an informed decision you need to find out your risk of recurrence with and without hormone blockers. Coming off HRT is pretty much a given since those hormones fuel your type of DCIS. Some doctors are OK with using topical estrogen vaginal cream and will prescribe other meds to help with hot flashes. The benefit of hormone blockers depends on many things including the size and grade of the DCIS, whether you are having radiation therapy, your medical history and your age. Have an honest discussion with your doctor. When you know the risk of recurrence with and without you can decide whether you are comfortable skipping them. Oncologists always recommend them since that is part of their job but it is ultimately your decision to follow their advice or not. Ask yourself if you would regret not taking hormone blockers if you did have a recurrence to help you make up your mind. What has happened to others is not a good indicator since everyone’s situation is different. All the best.
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I was on HRT for 10 years before my diagnosis. I knew I had to stop taking them and it really sucked but knew I had to do that. I did try the hormone blocker for a few months but had awful side affects so given my age at that time (62) and recurrence risk of 3% taking them vs 6% without I chose to stop them. If I had been 10 years younger and/or had a higher recurrence risk I’d likely have made a different decision. As @maggie15 said, you need all available data specific to you to make an informed decision. Hope everything goes as well as possible for you.
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