Bilateral mastectomy: how to decide on hormone therapy or not?

My wife, 39 yo, was diagnosed with DCIS non invasive. We did a bilateral mastectomy for both breasts (dcis in 1 breast). Should she take anti hormones pills or no. We had different feedbacks from several ancologists.
Thank u.

Wow, that is a heavily debated question. Just so that you understand we are not doctors here. We are people just like you that are patients and caregivers. Some of us have done much research on our favorite topics, but our best information comes from personal experience. That being said I am going to attempt to unwrap some questions for you to help you get to the best answer for your wife. When your wife had the initial biopsy results of her DCIS, it would say if it showed hormone receptive or not. This could help guide this decision. If it is estrogen receptive the doctors would often recommend hormone therapy. This could be further driven by grade, with 1 being the least aggressive and 3 being the most aggressive. Sometimes doctors will order an onco dx score which is a recurrence prediction score, it isn’t perfect but it certainly is a useful tool. These are important decisions you are making and the more informed you are the better your decisions will be. These are all good questions to ask the oncologist. Do you have an oncologist that you trust and can ask questions? Did your wife have any other treatment in addition to the surgeries?

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@auntieoakley

Wow, that is a heavily debated question. Just so that you understand we are not doctors here. We are people just like you that are patients and caregivers. Some of us have done much research on our favorite topics, but our best information comes from personal experience. That being said I am going to attempt to unwrap some questions for you to help you get to the best answer for your wife. When your wife had the initial biopsy results of her DCIS, it would say if it showed hormone receptive or not. This could help guide this decision. If it is estrogen receptive the doctors would often recommend hormone therapy. This could be further driven by grade, with 1 being the least aggressive and 3 being the most aggressive. Sometimes doctors will order an onco dx score which is a recurrence prediction score, it isn’t perfect but it certainly is a useful tool. These are important decisions you are making and the more informed you are the better your decisions will be. These are all good questions to ask the oncologist. Do you have an oncologist that you trust and can ask questions? Did your wife have any other treatment in addition to the surgeries?

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Thank u for your reply.this is exactly the issue. She is hormone receptive (80% for estrogen and 30% for progesteron) but her ancologist said that she doesn't have to take anti hormone pills since she had a bilateral mastectomy. I'm not really convinced… Especially that I ve read that some breast tissues under the patient arms cannot be removed under a full mastectomy. Thanks again

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@charbelghafari

Thank u for your reply.this is exactly the issue. She is hormone receptive (80% for estrogen and 30% for progesteron) but her ancologist said that she doesn't have to take anti hormone pills since she had a bilateral mastectomy. I'm not really convinced… Especially that I ve read that some breast tissues under the patient arms cannot be removed under a full mastectomy. Thanks again

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Her stage is zero (precancer DCIS)

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@charbelghafari

Her stage is zero (precancer DCIS)

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No other treatment (radiotherapy or chimio therapy is not required in her case)

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@charbelghafari

No other treatment (radiotherapy or chimio therapy is not required in her case)

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You said her stage is DCIS only, but do you know what her onco dx score was, or if her cancer was her2 positive?these are all part of the equation. Also if you are feeling uneasy about this can you talk to the oncologist? Maybe a second opinion?

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Onco dx was not requested by the oncologist (I didn't know about this test before now). I will seek a second ancologist opinion.

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@charbelghafari

Onco dx was not requested by the oncologist (I didn't know about this test before now). I will seek a second ancologist opinion.

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I didn’t have the test either and was told it was because I had triple negative breast cancer. That did not make sense to me. I did not feel like my oncologist was listening and kept pushing “ the standard of treatment” without the testing.

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@charbelghafari

Onco dx was not requested by the oncologist (I didn't know about this test before now). I will seek a second ancologist opinion.

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Hi, in 2002 I also had DCIS. I had a lumpectomy. The tissue that was surgically removed did not have ANY cancer cells. The margins and tissue were clear. During the biopsy they had removed the cancer cells. That is how small it was. After that spot was found my surgeon had they comb thru the mammo x-rays and they found another spot that turned out to be calcification. My surgeon said to discuss w/ radiologist in regards to radiation. Right away that doctor stated 5 days a week fir 7 weeks. I questioned this treatment & said ‘you are treating me as if I had matastisized (sp). ‘. He said ‘that’s the protocol’.my husband snd I researched many studies snd info. I did get a second opinion and he said it wasn’t necessary. It weighed heavy me to make a decision, as I was 50 years old snd IF it came back in 5 years it would be possibly affect my retirement years.
We finally made the decision – No to Radiation. Took Tamoxifen for 4 yrs. All is ok. Granted DCIS 19 yrs ago was treated differently. More information & knowledge now.
Just because it ‘protocol’ doesn’t mean it’s right for you. Cancer is not One size treatment fits all.
Blessings to your wife & you.

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I had triple negative invasive carcinoma I’ve been receiving radiation treatments to the whole breast and then a booster five treatments to where the tumor site was I have had horrific burns looks like somebody put cigarettes out under my armpit and radiation burns on the fold of my forearm I don’t understand why the burns are in beneath my forearm saw the radiation guy today who has a bit available for a couple of weeks they gave me a Cortizone cream that didn’t work when they looked at the finally took a good look at the burns they gave me skin Taggarty which is a Hydro gel. Has anybody experienced Burns like this. It doesn’t seem normal although they radiologist told me it is normal so I told them that I would do the first booster this week to allow those burns to heal. I was using my aloe plant washing it thoroughly sterilizing the knife and just taking the gel from the inside of the leaf and he told me that that was not sterile and the night was not to no longer use aloe because it could cause an infection or lymphedema the other doctor told me the aloe is fine so I don’t know what the inconsistencies drive a patient crazy.The doctor hasn’t been available for two weeks and I saw another doctor and a nurse in between when he for a scheduled appointment he scheduled and he changed my radiation schedule and then it suddenly he was nope not available so I would I wanna know is why the inconsistency why one doctor tells you the aloe is fine and the other one doctor tells her you can get lymphedema to stop has anybody experienced lymphedema from using our

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I used aloe, but not from a fresh plant. I bought 100% aloe with no alcohol from the store. I kept it in the fridge, it felt so good. The burns are sadly kind of normal. Probably 75% of the people I have known, have had burns. Lymphadema could happen if you get an infection, if the burns are open you have to be very careful with them. Are your burn blisters or open wounds or is the skin intact?

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@auntieoakley

I used aloe, but not from a fresh plant. I bought 100% aloe with no alcohol from the store. I kept it in the fridge, it felt so good. The burns are sadly kind of normal. Probably 75% of the people I have known, have had burns. Lymphadema could happen if you get an infection, if the burns are open you have to be very careful with them. Are your burn blisters or open wounds or is the skin intact?

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Open, I saw my radiation oncologist this morning he lambasted me for using aloe and didn’t recommend it said it could have bacteria that could cause infection. I explained I used tge leaf of the plant washed if in hot water and soap, sterilized my knife before I slit the leaf to get tge. Atrial gel out, He was firm I was not to use aloe even though it soothed it when the doctor who substituted for him said it was ok. I think some of this might me cya if I get an infection because I have been report the pain from the burn and was given cotizone cream recommended by the nurse and prescribed by the other doctor. Tgey said it could also cause lymphodema,again I wonder if pa rot of this is cya in cAse I do get an infection.

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Open skin burns get infected SUPER easy. I would agree that you shouldn’t use anything except sterile cream. If it gets infected it can cause lymphadema for sure. I am glad that you talked to them. Please be careful, infection in a burn can be pretty awful.

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