Conflicting surgical opinions? What now?

Posted by lauraho @lauraho, Nov 17, 2022

I had 2 consults this week. One recommended lumpectomy followed by radiation, then AI, and one for mastectomy with AI. One surgeon confident I didn’t need a mastectomy, the other didn’t feel I was a candidate for lumpectomy. Both are excellent surgeons. I am not sure how to process this and make the right decision. Anyone else have this experience?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

You can get a third opinion (I got 4!) .

We cannot really comment without more information on the particulars of your cancer. I tend to go with the more aggressive suggestions but I know others don't. Is there a tumor board where you are being treated?

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Thank you, my brain is so overwhelmed, I hadn’t thought of getting a 3rd opinion! ER+ DCIS, intermediate grade and both surgeons agree on this. I have 3 areas tracking from behind my nipple. Based on location, one said a mastectomy is needed, the other said she can remove with 2mm margins, save my breast and nipple, and will require radiation followed by AI, Second opinion, mastectomy followed by AI. Both locations had a tumor board, both are highly rated and well respected.

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@lauraho

Thank you, my brain is so overwhelmed, I hadn’t thought of getting a 3rd opinion! ER+ DCIS, intermediate grade and both surgeons agree on this. I have 3 areas tracking from behind my nipple. Based on location, one said a mastectomy is needed, the other said she can remove with 2mm margins, save my breast and nipple, and will require radiation followed by AI, Second opinion, mastectomy followed by AI. Both locations had a tumor board, both are highly rated and well respected.

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When I was diagnosed, two surgeons said mastectomy to the one breast and the chance of getting cancer in the other breast is extremely low. Without much thinking I opted for bilateral mastectomy. I didn’t even want to think and worry later on. I wanted both out. I would take the aggressive measure. It’s overwhelming dealing with cancer once. At least, I want to do my best to not deal with it again. My personal opinion. Guess what, when the pathology report came back, there was cancer in very early stage in the side that didn’t need to be removed.

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Great point, who knows what the future holds, but I am not sure I can manage constant worry! I am fearful of having least invasive, only to go through it again down the road.

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Sounds familiar. I saw 4 surgeons in Florida and flew to Boston to see the best in the country. All say same thing depending on philosophy:
Breast conserving surgeons spend their lives trying to save women AND conserve breasts. They are willing to remove cancer with clean margins as many times as I need it for the rest of my life. Radiation is current protocol for DCIS. AI drugs are an option too.
In 2003, I had my first cancer removed. 2003, second surgery to get clean margin. On Tamoxifen 5 years. Side effect hysterectomy. Raloxifene 7 years. Osteoporosis from early hysterectomy. 2007 third surgery suspicious finding other breast. 2022 fourth surgery, no clear margins, now having 5th surgery to get clean margins and wait… they found another suspicious area. I am done with this slow mastectomy one chunk at a time. I am going flat !! I’d love to hear about any medical side effects from going flat. I hope I am making the right choice. ( I also heard they can make a little mound from extra fat or skin? Is it useful at all? Doc says I don’t have much fat there anyway.

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@lauraho, do you want radiation or mastectomy. I think it comes down to that. Some folks with DCIS don't have either. Curious what the reasoning is from docs. They must have reasons. Maybe I missed or forgot some of your info.

I went flat 8 years ago. I was self-conscious at first but noone notices and clothes are comfortable. No bra, no prosthesis. I did stretches for the initial "iron bra" feeling but that went away anyway, pretty quickly.

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@toomanyquestions

Sounds familiar. I saw 4 surgeons in Florida and flew to Boston to see the best in the country. All say same thing depending on philosophy:
Breast conserving surgeons spend their lives trying to save women AND conserve breasts. They are willing to remove cancer with clean margins as many times as I need it for the rest of my life. Radiation is current protocol for DCIS. AI drugs are an option too.
In 2003, I had my first cancer removed. 2003, second surgery to get clean margin. On Tamoxifen 5 years. Side effect hysterectomy. Raloxifene 7 years. Osteoporosis from early hysterectomy. 2007 third surgery suspicious finding other breast. 2022 fourth surgery, no clear margins, now having 5th surgery to get clean margins and wait… they found another suspicious area. I am done with this slow mastectomy one chunk at a time. I am going flat !! I’d love to hear about any medical side effects from going flat. I hope I am making the right choice. ( I also heard they can make a little mound from extra fat or skin? Is it useful at all? Doc says I don’t have much fat there anyway.

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toomanyquestions:
I was told after my surgery I would have 5 weeks of radiation called proton, has anyone had
this kind? I had radiation 2013 when I had cancer in my left breast, and now 9 years later in
my right breast. I did not have proton at that time. I have read that Radiation for women
is not good, It seems to do something to the heart, has anyone heard this?

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Yes. I have read several articles about it. Rarely occurs but more often on left side where your heart is located or in upper inner quadrant. You can do deep breaths holding air in your lungs which inflates lungs pushing heart out of the way. The nih.gov website has many research articles about it.

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@zeerj

When I was diagnosed, two surgeons said mastectomy to the one breast and the chance of getting cancer in the other breast is extremely low. Without much thinking I opted for bilateral mastectomy. I didn’t even want to think and worry later on. I wanted both out. I would take the aggressive measure. It’s overwhelming dealing with cancer once. At least, I want to do my best to not deal with it again. My personal opinion. Guess what, when the pathology report came back, there was cancer in very early stage in the side that didn’t need to be removed.

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I’m facing the same dilemma. How was your experience going flat? Was it difficult to move, do you swim or play racquet sports. I am very active. What were your challenges and what helped?

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@marcia115

toomanyquestions:
I was told after my surgery I would have 5 weeks of radiation called proton, has anyone had
this kind? I had radiation 2013 when I had cancer in my left breast, and now 9 years later in
my right breast. I did not have proton at that time. I have read that Radiation for women
is not good, It seems to do something to the heart, has anyone heard this?

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I am looking into Proton therapy. It is considered to be safer with few side affects. Particularly in the left breast where traditional photon radiation they can injure your heart. Some people have nearly -0- side affects with Proton Therapy, its pretty amazing what they can do.

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