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SunshineViolet's avatar
22 days ago

DCIS, single mastectomy, no hormonal blocking therapy

 

Hello ,

Please I am looking for information/comments/  personal experience of  receiving no hormonal bocking therapy post single mastectomy. Ive had a single mastectomy for a high grade DCIS , two areas, 5 weeks ago. 

Im reading so much information about hormonal blocking agents .  Im 59 years of age and ceased my HRT immediately when I received my diagnosis. (recommended by my GP and Surgeon) I have been informed that I do not need any hormonal blocking medication.  Are the hormonal blocking agents effective ? Are they only used when radiation has also been implemented?

Im a bit confused . Many thanks.

 

4 Replies

  • Dear SunshineViolet​ 

    @Arpie is right - you need to discuss the matter first with your oncologist. Cancers vary a lot, so do treatments, depending on your cancer type, age, health etc. While you may possibly be advised that hormonal therapy may not make much difference, it's always wise to get electrical advice from an electrician, not a plumber! Both very skilled, but different trades. Treatments also change over time - when I started hormonal therapy (and I had no radiation) it was intravenous and five years was the standard recommendation. Four years in, there was sufficient evidence to say that ten years gave a better result. That was a decade ago and there will be more information/research to factor into a decision now. 

    The efficacy of any treatment is sometimes hard to measure. I remain NED (no evidence of disease) 14 years after diagnosis. Did my ten years on Letrozole work? Maybe. I don't know. I'm not sure that anyone can say that with absolute certainty. My oncologist had no doubts about recommending it. I might have had the same result with no treatment. But like Arpie, I know that if I hadn't had the treatment, and my cancer had recurred, I would have deeply regretted my decision not to have it. Treatment is full of decisions - it doesn't make life any easier, but a strong sense that you won't regret a decision, based on the full information available to you and irrespective of the end result, is a good indicator of your feelings and personal preferences. Good luck and best wishes. 

     

    • Briffarm's avatar
      Briffarm
      Member

      Thank you for sharing your experience. I am all ears at the moment. Diagnosed with DCIS ER+. Lumpectomy and node biopsy done and clear all margins. I thought it was the best news. Then came the future plan - 3 weeks of radiation and 5 years of AI. To be honest, I did not expect to have anything further than the procedure and recovery. Done lots of searching and if I can help it, I would prefer to have neither rad nor AI. Currently waiting on genetic test result before I move on. I know my bone scan is poor and cholesterol is border line. So, weighing up the side effects of AI vs prevention of cancer recurrence vs quality of life... lots to consider. Again. friends, I am very grateful for your experiences. 

      • arpie's avatar
        arpie
        Member

        Briffarm​ the main reason for Radiation & AI therapy after surgery (even with clear margins & no node involvement - as happened with me) is to mop up any microscopic bits of BC that may already be in the body .... that is just too small to identify at this stage.  

        I didn't want to have a recurrence or progression to Stage 4 without doing everything I could, to prevent it. 

        Being ER+ (estrogen+ & Progesterone+) means that your tumour was fed by these hormones in your body - which (even after menopause), are still created in the body & circulate, feeing any prospective new tumours.  The AI meds suppress this production.  Some people choose to have their ovaries removed - but some hormones are still produced elsewhere in the body!

        Make sure you quiz your Onc on all of this - even get a 2nd opinion if you like .... so that you are making the best educated decision, going forward!

        I just wanted to know that I'd thrown the bus at it - so that IF there was a recurrence or progression - I knew that I'd done all I could to stave it off!

        Take care & all the best

  • So sorry to see you joining us here SunshineViolet​ xx. I hope you are recovering well from your surgery xx

    It would be best if you discussed this with your Onc - specially as your surgeon & GP have said you'll not receive it! It isn't really their area of expertise!

    Have you actually SEEN an Oncologist yet?  They should be able to give you statistics on 'how much benefit' you will receive by either HAVING AI (Aromatase Inhibitors/Hormone Suppression) or NOT having AI!  Also, ask them for a printed copy of both.  

    Can you advise if your DCIS was 'invasive' or not?  And was it Hormone Positive? (Estrogen and Progesterone Positive?) 

    Will you be having reconstruction further down the line?  If 'yes' - you could join the Private Reconstruction Group here:https://onlinenetwork.bcna.org.au/closedgroup/choosing-breast-reconstruction

    If not, you can join the 'Flat Chat' Private Group here:
    Group: Flat Chat - no breast reconstruction | BCNA Online Network

    Both groups will have information that may help you into the future.

    I had a lumpectomy for Invasive Lobular Cancer (2 spots) and following surgery, I went on to have radiation and Hormone Suppression (for 7 years) and was lucky enough to bypass chemo.  (I was on HRT about 10 years earlier & had had a BC scare where I was called back for more intensive scans in Newcastle ... so I stopped it back then too!)

    Following my surgery & radiation, I was actually offered a 'clinical trial' of NOT having Hormone Suppression - but I wanted to throw the bus at it, as I'd had friends who'd progressed to Metastatic after a number of years, so I chose to do the hormone suppression.

    Take care & wishing you all the best.