Lumpectomy with radiation vs mastectomy for stage 1 invasive plus DCIS

Posted by windsurfer7 @windsurfer7, Mar 4, 2023

Receiving mixed messages... articles and doctors saying lumpectomy with radiation is better for me... understood that I needed radiation and tamoxifen either way. My mother had similar but was younger with reoccurrence. A former breast surgeon is saying there is more freedom with mastectomy (mostly regarding the need for imaging) and that I would not need radiation and tamoxifen that way. Any others making these choices at this time?

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@dawnblair33

Yes it is confusing! I just don't understand the need for radiation if they know that radiation causes Angiosarcoma! And why would it be a treatment option once someone is diagnosed with Angiosarcoma? My mom was in so much pain, it spread like wildfire after the radiation! My mom trusted them to give her the best treatment with the hope of beating it! I just want everyone that is diagnosed with Angiosarcoma to have a fair chance, to have effective treatment options, and to get as much support and care as possible! This is a horrible disease, When I think about my mom's case, I feel obligated to share her story because she was not informed of the risk that came with the choice to go through radiation! With all do respect, just remember..."IT'S YOUR LIFE, YOUR BODY AND YOUR CHOICE!" You are in my prayers! Lets Keep in touch. #CANCERSUCKS#RIPMOM

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I am sorry you have gone through this, what a horrible thing to go through. I cannot imagine why a doctor would recommend radiation for someone already diagnosed with angiosarcoma.
Angiosarcoma as a result of breast radiation is exceedingly rare, but as I said before; that doesn’t really matter if you are in that group.
I would hate to encourage people to go against their doctors recommendations since I don’t really have all the facts about their individual cancer.
Where was your moms angiosarcoma before her breast cancer diagnosis? Was her radiation recently?

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@auntieoakley

I am sorry you have gone through this, what a horrible thing to go through. I cannot imagine why a doctor would recommend radiation for someone already diagnosed with angiosarcoma.
Angiosarcoma as a result of breast radiation is exceedingly rare, but as I said before; that doesn’t really matter if you are in that group.
I would hate to encourage people to go against their doctors recommendations since I don’t really have all the facts about their individual cancer.
Where was your moms angiosarcoma before her breast cancer diagnosis? Was her radiation recently?

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In response to your comment. In my mom's case, she was first diagnosed with breast cancer, a lumpectomy was performed without radiation. All was well for a while, but the breast cancer came back, this time she just opted to have the mastectomy, at that time, she was encouraged by one of her Dr's to do the radiation in order to heighten the chances of the breast cancer not returning, but was NOT informed of the risk associated with the radiation. She followed the Doctors advice, got the radiation after the mastectomy. All was well for some time, but then out of nowhere she factored a rib, she went thru further testing and was diagnosed with Angiosarcoma in the soft tissue between her ribs. At that time she was told that she had developed Angiosarcoma due to the radiation treatment. Which was a major blow to my mom, because if she was informed of the risk associated with the radiation she would have taken another route. I just don't understand that if its known that this form of radiation causes sarcomas, why would it be used to treat another form of cancer? Even after my mom was diagnosed with Angiosarcoma, Why would radiation be a part of her treatment option? I don't understand the logic in that at all! I would never encourage anyone to go against their Dr's orders or advice, but after witnessing my mom's journey, I would advise anyone to simply do their research! My mom put all of her trust in her team of Doctors, and that was her choice! They say Angiosarcoma is a rare form of cancer and they don't know much about it. But what they do know is that radiation causes it, and I'm saying...If that's the case then why is radiation being added the the arsenal to fight cancer? I don't understand that.

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@dawnblair33

In response to your comment. In my mom's case, she was first diagnosed with breast cancer, a lumpectomy was performed without radiation. All was well for a while, but the breast cancer came back, this time she just opted to have the mastectomy, at that time, she was encouraged by one of her Dr's to do the radiation in order to heighten the chances of the breast cancer not returning, but was NOT informed of the risk associated with the radiation. She followed the Doctors advice, got the radiation after the mastectomy. All was well for some time, but then out of nowhere she factored a rib, she went thru further testing and was diagnosed with Angiosarcoma in the soft tissue between her ribs. At that time she was told that she had developed Angiosarcoma due to the radiation treatment. Which was a major blow to my mom, because if she was informed of the risk associated with the radiation she would have taken another route. I just don't understand that if its known that this form of radiation causes sarcomas, why would it be used to treat another form of cancer? Even after my mom was diagnosed with Angiosarcoma, Why would radiation be a part of her treatment option? I don't understand the logic in that at all! I would never encourage anyone to go against their Dr's orders or advice, but after witnessing my mom's journey, I would advise anyone to simply do their research! My mom put all of her trust in her team of Doctors, and that was her choice! They say Angiosarcoma is a rare form of cancer and they don't know much about it. But what they do know is that radiation causes it, and I'm saying...If that's the case then why is radiation being added the the arsenal to fight cancer? I don't understand that.

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There are things about your moms case that I don’t understand, but I don’t know all the specifics or where someone might or might not have made good decisions.
Reasoning it this way, I can understand why it is part of the arsenal. I have breast cancer for sure, one of my treatment choices carried a risk of less than one half of a percent chance I could get another cancer. I would probably risk it since I know I could die from the cancer I already have.
Like I said before every treatment is a cost vs benefit equation for each patient. I had a cancer that is well known for recurrence and being aggressive, so when I was not offered a mastectomy, but was offered chemo and radiation along with multiple surgeries, I took every treatment they offered me to give myself the best chance of surviving the breast cancer.
I am so sorry that turned badly for your mom. It is heartbreaking to be the one who gets the rare thing. 💔 I understand a bit about this from my genetics.
Can I assume you are getting screen regular to prevent your own life from being threatened in this way.

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@dawnblair33

My advice to you is to opt for the mastectomy, radiation has far greater consequences! The risk associated with radiation is developing Angiosarcoma, a rare and highly aggressive form of cancer! My mom was diagnosed with breast cancer, she got a lumpectomy with radiation, but wasn't informed of the risk. She was diagnosed with Angiosarcoma some time later, and told it was caused by the radiation. My mom said that if they had told her about the risk, she would've never opted to do radiation. With all do respect, Trust God, do your research, and avoid the radiation at all cost! I wish you the best!

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Hi everyone, I completed 6 weeks of radiation on 1/25/23. I chose that for my Advanced Ductal Carcinoma because I had Stage 1 n nothing in my lymph nodes. I don’t take any drugs and didn’t like the options that are offered for 5 years. No one mentioned this rare post radiation condition called Angiosarcoma. Soon, I will celebrate my 76th birthday and I believe I chose what was best for me. Everyone should follow their own individual instincts with as much research knowledge as possible. I wish you the best solution. Take care of yourself first🙏🏻🌈

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I feel where you are right now. I was newly diagnosed DCIS last May 2022. It involved 3 areas in my right breast and pretty extensive so I chose mastectomy. After the surgery when the biopsy was done it turned out I had microinvasive areas making it a stage I and DCIS so I am glad I had the mastectomy done. I also didn’t want the radiation treatment which was one of the reasons I chose mastectomy. I just started with tamoxifen because I kept pushing it off and scared of the side effects. Am still getting used to it. I wish you the best. Hugs.

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@skittycorn76

I feel where you are right now. I was newly diagnosed DCIS last May 2022. It involved 3 areas in my right breast and pretty extensive so I chose mastectomy. After the surgery when the biopsy was done it turned out I had microinvasive areas making it a stage I and DCIS so I am glad I had the mastectomy done. I also didn’t want the radiation treatment which was one of the reasons I chose mastectomy. I just started with tamoxifen because I kept pushing it off and scared of the side effects. Am still getting used to it. I wish you the best. Hugs.

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Oh, yes, that's exactly how I feel. I know they are recommending tamoxifen, but I am concerned about the side effects. Did you do bilateral or uni? Did you opt for reconstruction? My diagnosis is very similar to yours. It was a small tumor, but then the DCIS was more extensive than they first thought. A former surgeon says that DCIS isn't a big deal, but my surgeon seems to think it is.

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@auntieoakley

There are things about your moms case that I don’t understand, but I don’t know all the specifics or where someone might or might not have made good decisions.
Reasoning it this way, I can understand why it is part of the arsenal. I have breast cancer for sure, one of my treatment choices carried a risk of less than one half of a percent chance I could get another cancer. I would probably risk it since I know I could die from the cancer I already have.
Like I said before every treatment is a cost vs benefit equation for each patient. I had a cancer that is well known for recurrence and being aggressive, so when I was not offered a mastectomy, but was offered chemo and radiation along with multiple surgeries, I took every treatment they offered me to give myself the best chance of surviving the breast cancer.
I am so sorry that turned badly for your mom. It is heartbreaking to be the one who gets the rare thing. 💔 I understand a bit about this from my genetics.
Can I assume you are getting screen regular to prevent your own life from being threatened in this way.

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Hello and Thanks so much for your input! You are exactly right. I just want to express the fact that if a Doctor recommends radiation for any reason concerning cancer, the risk should also be shared! My initiative is this: " ITS YOUR LIFE, YOUR BODY, YOUR CHOICE!" With that being said, if my mom would've been properly informed, she could have made better choices that was best for her, even if her choice led her to prepare for her end of life. I do get screened for Breast cancer, and will continue to do so. I've decided to turn my pain into passion and share my mom's story, in Hope's to encourage people who are diagnosed with Breast cancer to do research, get a second opinion if necessary, Trust God through the process, and to know that it is...YOUR LIFE, YOUR BODY, YOUR CHOICE! I want to gain as much knowledge as I can in order to be equipped to care for any other relative that ends up with this unfortunate diagnosis. May God be with us all, Cancer patients & the family members who are affected! 🙏🏽

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@grateful26

Hi everyone, I completed 6 weeks of radiation on 1/25/23. I chose that for my Advanced Ductal Carcinoma because I had Stage 1 n nothing in my lymph nodes. I don’t take any drugs and didn’t like the options that are offered for 5 years. No one mentioned this rare post radiation condition called Angiosarcoma. Soon, I will celebrate my 76th birthday and I believe I chose what was best for me. Everyone should follow their own individual instincts with as much research knowledge as possible. I wish you the best solution. Take care of yourself first🙏🏻🌈

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I would first like to say to you, that I wish you the best outcome possible! You are right! Everyone should do their research, and follow their instincts! What's updating to me in my mom's case was that she wasn't informed of the risk associated with post radiation treatments for Breast Cancer after her mastectomy. Which she stated, and I quote, " IF I HAD KNOWN THE RISK, I NEVER WOULD'VE GOTTEN THE RADIATION". She would've taken her chances, and just prayed that the Breast cancer didn't come back. With that being said, I feel obligated to share my mom's story to encourage people to do their research, choose what is best for you! That's my initiative..
ITS YOUR LIFE, YOUR BODY, YOUR CHOICE! May God be with you, I wish you the best! Take care🙏🏽

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I am scheduled for a double mastectomy on March 21 at the Mayo in Jacksonville. I was told I will not need radiation. I am triple negative (stage 1) and positive for the BRCA1 gene mutation. My MRI showed no cancer in the lymph nodes, but the surgeon will still test one or two during surgery to be sure there is no spread. Maybe the plan for no radiation will change if my lymph nodes show cancer. What I am finding is that everyone's journey is different and hopefully the medical care team knows what they are doing and putting your health and well being first. at my original consult with the surgeon, he wanted to do a lumpectomy and I wanted a mastectomy because my grandmother died of breast cancer at age 30 and I've had numerous friends get breast cancer again after a lumpectomy, I just wanted them gone. I was advocating for my choice, but he was trying to convince me that a lumpectomy is all I needed. He changed his tune when the positive results for the BRCA1 gene mutation came back. Hope this helps someone.

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@eurojones2

I am scheduled for a double mastectomy on March 21 at the Mayo in Jacksonville. I was told I will not need radiation. I am triple negative (stage 1) and positive for the BRCA1 gene mutation. My MRI showed no cancer in the lymph nodes, but the surgeon will still test one or two during surgery to be sure there is no spread. Maybe the plan for no radiation will change if my lymph nodes show cancer. What I am finding is that everyone's journey is different and hopefully the medical care team knows what they are doing and putting your health and well being first. at my original consult with the surgeon, he wanted to do a lumpectomy and I wanted a mastectomy because my grandmother died of breast cancer at age 30 and I've had numerous friends get breast cancer again after a lumpectomy, I just wanted them gone. I was advocating for my choice, but he was trying to convince me that a lumpectomy is all I needed. He changed his tune when the positive results for the BRCA1 gene mutation came back. Hope this helps someone.

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Thank you for sharing. Yes, every case us different. Right, I can see how having the gene mutation would make the decision more clear. I'm so glad that you are getting what you requested. How did you decide on Mayo for the surgery?

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