DCIS
has anyone refused taking hormones after surgery and radiation with dcis nuclear grade 3
Comments
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Many people have refused these treatments following a DCIS dx and in many situations, it’s not even recommended by the medical community. Your chances of a recurrence are very low so the benefit is minimal compared to the possible side effects of an anti hormonal. It can reduce the incidence of another new primary in the other breast. But even that is relatively unlikely (about 5%) I believe. You need to ask your doctor how much taking an anti hormonal will benefit your particular situation. But beware of stats like 50%. A 50% reduction when the odds of recurrence are only 2% is only 1%. Some women on BCO have started anti hormonal to see how they manage on the med will the option of discontinuation if adverse SE do not resolve. Please have a detailed discussion with your MO to decipher the best plan for you.
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thank you so much
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Hi pegster62.
I don't have any answers but am in a similar position. Just had a mastectomy 3 weeks ago. DCIS diagnosis was confirmed but due to the amount of it and how deep it went they are now recommending radiation which was not a part of the original plan. I was told by my surgeon at my initial meeting that I would be having hormone therapy. No discussion, just a what's next kind of statement. All of this was new so I didn't question it at the time. I have done some research since and I am a little leery. I have actually signed up for a Zoom meeting about hormone therapy and side effect management through the Canadian Breast Cancer Network. It's on Nov. 28th at 1:00 PM. Perhaps this might be helpful?
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Hi Pickles3:
Having had double mastectomies with DCIS should almost eliminate your chances of a recurrence. So hormone therapy should have minimal benefit. However, what do they mean by “so deep”. Did they get clear margins? I would delve more into their reasons for radiation and hormonal therapy following mastectomies. I too had radiation following my mastectomy due to a positive margin, but this wasn’t automatic. I researched endlessly regarding pros and cons and the conclusion was “50/50 for and against. It depended upon my personal preference. None of these optional treatments should be automatic as both radiation and hormonal have risks and the risk of recurrence must outweigh the risks of further treatment. Please have your medical professionals justify their recommendations. The decision is yours, not theirs. They may have valid and strong reasons for their recommendations, but they need to treat you as the decision maker and qualify their decision. I am so discouraged by how many women are told what to do without discussing options and probabilities. You deserve at least that! Then you can feel empowered and own the decision. All the very best.
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Thanks for your response, tb90.
I should have mentioned that I had a single mastectomy hence the need for hormone therapy. Having been blessed with good health up until now I haven't had a lot of interaction with the healthcare system. I am learning quickly to become an advocate for myself and I appreciate your advice. I actually feel a little in the dark about the details of my diagnosis and I know that won't do. I have an appointment with the radiation oncologist on Nov. 26th and one with the medical oncologist on the 29th. I will be sure to ask questions so I can make informed decisions. Can I ask, how was your radiation experience? Thank you in advance.
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Sorry about my error. Where did I get double mastectomies??? I found radiation to be quite easy. And I travelled two hours each direction in the winter in Manitoba, Canada! I had some serious soreness the week following my final radiation treatment. It’s the gift that keeps giving. And I had already returned to work. Only surprise I had. And it’s now been 11 years and nothing has popped up. The qualifications of your radiologist is critical. They are not all equal. A valuable piece of information I received from my breast surgeon, who, by the way, did not support my decision for radiation. It’s all so difficult to make all these decisions at a time when many of us are feeling so vulnerable and powerless. Regardless, your prognosis is excellent!
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Thank you for sharing. I am encouraged by your experience and by the fact that it has been 11 years and "nothing has popped up" 😊. I feel fortunate that I will not have a 2 hour drive for treatment as I live in southern Ontario about 20 minutes from the Juravinski Cancer Centre which is supposed to be a very good facility. Good on you for toughing it out and getting the job done.
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