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

  • maggie15
    maggie15 Posts: 1,563

    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.

  • abigailj
    abigailj Posts: 127

    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.

  • Hi, thank you both for your reach out- your opinions are definitely assisting me in understanding what kinds of information I should be seeking. I have also been forwarded a link from this site to some info on reoccurance rates depending on status.

    It's all so incredibly helpful, thank you for taking the time and sharing with me. It's a whole new world that's for sure.

    I'm currently in hospital having undergone a second dcis wider excision on my right breast as the surgeon didn't get the clear margins she would've liked from the first.

    There's so much care. Thank you all so far. Please feel free to keep it coming as I'm learning loads from your insights.

  • good morning all. I have been absolutely consumed by my recent diagnoses and potential upcoming decisions on ongoing treatment.

    I have DCIS and have just undergone a second operation to ensure appropriate margins. My pathology report will be available in 2 weeks. Whist I wait I have:

    1. read a book called Oestrogen Matters by Dr. Avrum Bluming and Carol Tavis, PhD to get more informed on the impact of my HRT on cancer (and quality of life). Fascinating and science lead book.
    2. Listened to a call between Dr. Michael Lagios and a lady in the US that has become an advocate for patients given the overtreatment of DCIS, Donna Pinto (Google Donna Pinto and DCIS 411 - there is a link to the recording on her front page ). The interview/discussion was remarkable and aligns with all the research in the book I was just reading. They are not associated with the book.

    Neither the book nor the Dr/website advocates for following the usual path of Oestrogen blocking drugs on a grade 1 or 2 DCIS. They say DCIS is an early indicator that you may get invasive cancer in the future though. And even though your DCIS may be receptor positive, it does not mean that it uses your hormones to grow.

    Has anyone gone down this rabbit hole too? At this moment I am seriously thinking that once I have my pathology report (and should there be positive margins), that I will have the 5 days radiation treatment, remain on HRT and have annual mammograms.

    help? Not confused, just concerned that I'm only finding what I want to hear.

  • maggie15
    maggie15 Posts: 1,563

    Hi @valuedlife25, Part of the problem is scientists are still researching whether/how DCIS becomes IDC. Some people (like me) have both adjacent to each other. Upon analysis in some of these samples the cellular features are similar and in others they are not. Researchers now think that both the tumor microenvironment and cellular features determine whether IDC develops. It’s hard to make decisions when the biology is still being investigated.

    Statistically DCIS recurs 20% of the time and of these recurrences 50% are DCIS and 50% are invasive.Tamoxifen decreases the rate of recurrence but does not increase survival. They are hoping to be able to determine when DCIS leads to IDC to guide treatment but aren’t there yet.

    Your DCIS could be one that would never recur as IDC even while staying on HRT but currently there is no way to tell. If you find the risk acceptable and HRT really improves your wellbeing then go with your plan.

    https://www.nature.com/articles/s41392-024-01779-3

  • abigailj
    abigailj Posts: 127

    I found this 2021 study led by a Columbia University professor to be interesting - https://www.cuimc.columbia.edu/news/stage-zero-breast-cancer-whats-optimal-treatment-dcis

    I was not aware that "… radiation and hormone treatments do not change survival—the 10-year survival rate for women diagnosed with DCIS is 98% regardless of whether they receive either treatment. These treatments instead reduce the risk of breast cancer down the road. " With respect to using HRT after DCIS diagnosis, I found this 2023 article from the NIH National Library of Medicine - https://pmc.ncbi.nlm.nih.gov/articles/PMC10624058/

    that includes the statement "According to current knowledge, HRT is fundamentally contraindicated after breast cancer but can be individually considered after a risk-benefit assessment and when nonhormonal therapies have failed. The same applies to HRT after DCIS, which should not be routinely offered but nonetheless can be considered in individual cases." However a key item about HRT use in the reputable sources I've looked into all mention that the longer one uses HRT, the more risk of BC (and so presumably that includes recurrence) increases. If you do choose to use HRT again, maybe consider taking half of the lowest dose typically prescribed and periodically try stopping to see if your symptoms are manageable? I have no idea if that would affect risk in any manner, just food for thought.

  • waves2stars
    waves2stars Posts: 158

    Why not go to a large teaching hospital to get a second opinion? There are features other than grade that indicate whether or not the dcis is of an aggressive nature. I’d also like to add that I had a mammogram, breast us and mri that only showed my idc. Final pathology after a mx revealed over 2cm of DCIS that had a comedo necrosis component. So what’s lurking may not be detectable right now. The troubling part of hrt is the synthetic progestins which you will have difficulty getting around if you have a uterus. You need to do what’s best for you but make sure you’re informed. I’m adding a link to a post a knowledgeable breast surgeon just put out today kind of talking about how all DCIS isn’t vanilla, and things to look for in your path report. I think it’s basically similar info as what maggie15 shared.

    https://www.instagram.com/reel/DFa5clkpg44/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==

  • Hi @waves2stars. Thank you for sharing as it really helps me weigh up information. I'm still waiting for my 2nd pathology report and yet to meet with the oncologist so gathering info for now. Thank you for the link, I'm going to absorb that next.

    As for progestin, I think I'm not taking the synthetic kind. I'm taking utrogestan, which looks to be 100mg progesterone (that make sense?).

    Still got lots to learn, like most of us thrust into this new world. I'm keen to understand all the questions I should be asking around how to assess DCIS reoccurance and aggressiveness though. Not sure what tests advise oncologists on the DCIS and it's future threat. Want to make sure they're all done (if not too late already).

    My pathology does show specimens with low and also intermediate growth, no necrosis.

    So, will check out your link and keep my notes going. I didn't have a MRI, just a mammogram, biopsy and then lumpectomy. Have I missed a step?

  • abigailj
    abigailj Posts: 127

    An ultrasound can detect smaller lesions that a mammogram can easily miss and an ultrasound is absolutely necessary as part of annual screening if you have dense breasts since a mammogram is not as effective for dense breast tissue. In the even that an ultrasound wasn't part of routine screening, I thought it is was standard procedure to order an ultrasound if the mammogram showed any areas of concern so please speak to care team about this. You need all available information to make the decision that is right for you. Hope all goes as well as possible!

  • maggie15
    maggie15 Posts: 1,563

    There is an oncotype dx breast DCIS genomic test which gives the probability of DCIS recurring, IDC recurring over the next 10 years and the benefit of radiation. Some insurances cover this test. Exact Sciences whose test this is say they will help with the cost for those whose insurance won't cover it. This might be something to discuss with your doctor.

  • Thanks @maggie15 , I've had a look online. Can't believe that this does not seem to be available in New Zealand. If I want to have the test done I need to send tissue samples overseas. Remarkable. Also, the tests seem to indicate reoccurance rates with endocrine therapy. I'm still trying to understand my risk without endocrine therapy for DCIS (with the added complexity of comparing that to with, and without, continuing my HRT).

    I'm really appreciating all the support from you, and each of you on this thread, thank you so much. Please keep it coming as I'm trying to form a balanced opinion backed with information (and not fear). Things are not simple and our diagnoses are not all the same either. So many variations, with so many interesting insights that is helping me to build a better picture.

  • scalas
    scalas Posts: 3

    I'm on a similar path @valuedlife25. I'm 57, live in the USA, diagnosed a week ago with DCIS stage 0 ER+ PR+ . I'm taking Progesterone 200mg and a progesterone and estriol cream since sept last year for Menopause, sleep issues and general health. Onco surgeon ordered to stop HRT immediately, and next steps are another biopsy, a lumpectomy, radiation, and hormones' inhibiting treatment. My HRT prescribing doctor (who is a metabolism specialist doctor in another country - is pro carnivore diet, vitamins, sun, and some level of HRT - but no testosterone replacement in his opinion) is saying not to stop Progesterone at all. It's a rollercoaster ride. I will be having a consultation with him to understand more his stance and the pros and cons. I'll post his opinion here, if it helps on making an educated decision. Let me know if you have any questions that I can add to my consult.

  • moderators
    moderators Posts: 8,861

    @scalas thanks for sharing all that information today, and eventually from your doctor. What did they say about the estriol cream?

  • scalas
    scalas Posts: 3

    @moderators they said to stop ALL hormones. Let's see what my foreign doctor has to say.

  • scalas
    scalas Posts: 3

    Hi. I consulted with my foreign doctor and he said as a good measure for now to stop the hormones. But he recommended to do a test called greek test or liquid biopsy that is done in Europe. He says they study my blood specimen and find the circulating cancer cells and try many natural substances to see which one reacts and destroys my particular cells. Not sure where in the US I'll find a lab that draws the blood and sends it abroad for this. He also said that he agrees with lumpectomy part of the treatment. I hope this helps.

  • All of my cancers have been hormone positive and I've been advised by my main oncologist that I should never take any sort of estrogen or progesterone. After my 1st round of breast cancer I was diagnosed with endometrial cancer. The OBG oncologist wanted to put me on progesterone to stop the non-stop bleeding I was experiencing until I could have hysterectomy. I told her no because of my hormone positive breast cancer and my main oncologist told the OBG the same thing. Being hormone positive, the cancer feeds on estrogen and progesterone to help it grow. The way I see it is I want to starve my cancers so it makes sense to me not take hormones which is their nutrient/food source. Good luck to you whatever you decide.

  • Hi everyone,

    I really appreciate the comments, support and Information.

    Just wanted to share this podcast as it made a lot of sense to me. What do you make of it?

    I've read the book Oestrogen matters and that made a lot of sense to me too. Research is changing all the time, it's hard to keep on top.of latest thinking.