1. < Breast Cancer

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

Posted by Blox (darkangelsigning@gmail.com) @charbelghafari, Sep 7, 2021

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.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Sep 13, 2021
In reply to @olg1 "Wow God Bless you! I went for treatment today and asked to serve the doctor first...." + (show)
@olg1

Wow God Bless you! I went for treatment today and asked to serve the doctor first. Glad I did.first he wanted to continue treatment.when I asked him to take a close look at the burn that had to be bandaged because it was raw and bleeding .he had trouble getting tge non stick bandages off . I told him I figured out getting in the shower and letting the cool water completely soak and let it fall off by itself was the only way I could get it off. He asked the nurse to wet a towel and when the bandage was wet enough he could get it off. I used to work in a hospital as a medical social worker years ago so I was able to think outside the box. I told him zi needed a visiting nurse to help me dress the wound as I have both shoulders bone on bone,a rotator cuff tear, a labrum tear a bicep tendon tear,of tge arm WC here I had tge surgery and it was difficult to hold the dressing in place until I could get my bra up to hold the dressing. I can’t go bra less, I don’t care what anyone thinks, I need tge support and to hold the dressings in place. I have several burns,some are raw flesh. He gave me a week to let it heal, and gave me some dressings which cost a fortune at tge pharmacy.ask and you shall Receive.. Sometimes we endure more than we have to. I am no baby for pain ,I almost lost my colon inn2013,almost bleed out in 2013,and was on I CU 4 times bleeding out. What I have learned is you have to speak up as a cancer patient And let your care givers know your circumstances. Everyone is different. Tgey are now using the word pain for these horrible burns and not discomfort”. Tgey gave me the rest and supplies I needed to get through this. You have to go by what your body tells you. Your experience is unique from others.

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Good for you. Sometimes you just have to find a way to make them listen. Glad you are getting some relief from this.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 13, 2021
In reply to @charbelghafari "Onco dx was not requested by the oncologist (I didn't know about this test before now)...." + (show)
@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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@charbelghafari, how are you and your wife doing with your treatment decision making? Have you sought a second opinion?

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1 reply
olg1 | @olg1 | Sep 13, 2021
In reply to @auntieoakley "Good for you. Sometimes you just have to find a way to make them listen. Glad..." + (show)
@auntieoakley

Good for you. Sometimes you just have to find a way to make them listen. Glad you are getting some relief from this.

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You are absolutely right. They treat with a one size fits all “standard of treatment” and scare you into compliance. You have to e your own advocate and not only listen to the doctors but balance it with what your body is telling you.

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Blox (darkangelsigning@gmail.com) | @charbelghafari | Sep 13, 2021
In reply to @colleenyoung "@charbelghafari, how are you and your wife doing with your treatment decision making? Have you sought..." + (show)
@colleenyoung

@charbelghafari, how are you and your wife doing with your treatment decision making? Have you sought a second opinion?

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Hello, we re better now. I had an appointment with a second oncologist. He said that she doesnt need hormone treatment following a bilateral mastectomy (for DCIS) even if she s hormone positive. Few days ago, I sent her file to a well know oncologist in the usa to confirm again. I'm still waiting for his reply.

Thanks for asking

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vit05 | @vit05 | Oct 10, 2021
In reply to @sequoia "Hi, in 2002 I also had DCIS. I had a lumpectomy. The tissue that was surgically..." + (show)
@sequoia

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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As I read your blog it seems I am currently in the same spot you as you when you had DCIS. How did you do on tamoxifen

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1 reply
sequoia | @sequoia | Oct 10, 2021
In reply to @vit05 "As I read your blog it seems I am currently in the same spot you as..." + (show)
@vit05

As I read your blog it seems I am currently in the same spot you as you when you had DCIS. How did you do on tamoxifen

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@vit05 I did ok on Tamoxifen. Did not have any side effects the first 3 1/2 years. Then, I thought, it was affecting my hair. It was getting dry & brittle. It would break off. None of it was dramatic, but I color my hair and so work at not having it damaged. My oncologist said ‘okay, take a break from or fir a month or so. If hair improves then discontinue. If it remains the same then finish out the 5 years. My hair improved, so I just stopped the Tamoxifen. I was lucky not to have any side affects. Blessings

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rbaltzley | @rbaltzley | Oct 19, 2021
In reply to @auntieoakley "I used aloe, but not from a fresh plant. I bought 100% aloe with no alcohol..." + (show)
@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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Honestly this sounds like such an unacceptable treatment and the researchers need to get on the ball and start looking for safer ways to treat cancer patients this is ridiculous at this point

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Oct 19, 2021
In reply to @rbaltzley "Honestly this sounds like such an unacceptable treatment and the researchers need to get on the..." + (show)
@rbaltzley

Honestly this sounds like such an unacceptable treatment and the researchers need to get on the ball and start looking for safer ways to treat cancer patients this is ridiculous at this point

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Sadly, this is what we have, although things are getting better all the time. My grandmother had a Halstead mastectomy. My treatments were less and I had what we called slash, poison, and burn. Today thankfully, many women can avoid most or all of those things. There just isn’t always an easy fix. Did you have breast cancer treatment? Problems with radiation?

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1 reply
rbaltzley | @rbaltzley | Oct 20, 2021
In reply to @auntieoakley "Sadly, this is what we have, although things are getting better all the time. My grandmother..." + (show)
@auntieoakley

Sadly, this is what we have, although things are getting better all the time. My grandmother had a Halstead mastectomy. My treatments were less and I had what we called slash, poison, and burn. Today thankfully, many women can avoid most or all of those things. There just isn’t always an easy fix. Did you have breast cancer treatment? Problems with radiation?

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No, I didn't opt for radiation

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