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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@windsurfer7

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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I only did mastectomy of my right breast. I did not do reconstruction and will not do one. I had surgery done last Sept.29 2022. I wanted to have quickest recovery and did not want to have to worry about something artificial inside me. I initially refused the tamoxifen when my onco suggested it but he referred me to a UCSF breast ca specialist and really strongly suggested it and they assured me the side effects are manageable and at least to try it and just stop if I can’t handle it. So I finally said yes. I am very sensitive to medications even vitamins and am scared of the tamoxifen. I am at day 4 today. The day after I took it I had my period returned even if I just had my period end the week before. I felt a bit weak within the hour of me taking it and I just focus on my deep breathing and listen to meditation positive music to distract. I just keep telling myself “you are still breathing you will be ok”. I am a bit more tired today but hopefully it will get better.

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@skittycorn76

I only did mastectomy of my right breast. I did not do reconstruction and will not do one. I had surgery done last Sept.29 2022. I wanted to have quickest recovery and did not want to have to worry about something artificial inside me. I initially refused the tamoxifen when my onco suggested it but he referred me to a UCSF breast ca specialist and really strongly suggested it and they assured me the side effects are manageable and at least to try it and just stop if I can’t handle it. So I finally said yes. I am very sensitive to medications even vitamins and am scared of the tamoxifen. I am at day 4 today. The day after I took it I had my period returned even if I just had my period end the week before. I felt a bit weak within the hour of me taking it and I just focus on my deep breathing and listen to meditation positive music to distract. I just keep telling myself “you are still breathing you will be ok”. I am a bit more tired today but hopefully it will get better.

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Oh, thank you so much for writing. I can relate so much. I don't really want implants, sounds hot, but...I have a big rib cage... also small chested so wouldn't want larger really, but the reconstruction with using your own tissue sounds complex. Anyway, I'm also sensitive to medicines, so I understand what you are saying about that. Thanks for sharing your experience with tamoxifen so far. I'm 49 and while it probably isn't far off, I haven't started menopause yet, so I get it.

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@windsurfer7

Oh, thank you so much for writing. I can relate so much. I don't really want implants, sounds hot, but...I have a big rib cage... also small chested so wouldn't want larger really, but the reconstruction with using your own tissue sounds complex. Anyway, I'm also sensitive to medicines, so I understand what you are saying about that. Thanks for sharing your experience with tamoxifen so far. I'm 49 and while it probably isn't far off, I haven't started menopause yet, so I get it.

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Same here! Flat chested and wasn’t interested in the reconstruction. I am turning 47 this April. Just a little tip, What helped after surgery is that mastectomy pillow I got to hug and protect the site. I got one online. I have a dog who never leaves my side. Also, my sister sewed inside right pockets on my old button up shirts so I can put the JP drain in.

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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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I too had an aggressive breast cancer (stage 1 ).
I was told I only needed Lumpectomy, chemotherapy and radiation . No mention of mastectomy because the cancer hadn’t spread to lymph nodes yet. I was glad to hear this I didn’t want to lose my breast. Six years later, my only affects from my cancer treatments have been very sore breasts and memory issues( chemo brain?)
Either way, whatever chose we decide on the one thing we all want is to get rid of the nasty cancer in our bodies!

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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 too had same type of breast cancer as you and same treatment. I had never heard of Angiosarcoma either, never mentioned to me BUT…after reading about it I’ve been having rib pain and muscle spasms on side of the breast involved😳 But still glad at my choice I made👍

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@skittycorn76

Same here! Flat chested and wasn’t interested in the reconstruction. I am turning 47 this April. Just a little tip, What helped after surgery is that mastectomy pillow I got to hug and protect the site. I got one online. I have a dog who never leaves my side. Also, my sister sewed inside right pockets on my old button up shirts so I can put the JP drain in.

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Thank you for the tips! Helps to hear what has worked you! My sister sews, too, so I'll have to keep that in mind.

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@rosy54

I too had same type of breast cancer as you and same treatment. I had never heard of Angiosarcoma either, never mentioned to me BUT…after reading about it I’ve been having rib pain and muscle spasms on side of the breast involved😳 But still glad at my choice I made👍

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I do have a slight rash around radiated area n some internal pain. Still, can’t sleep well like before surgery! It will take more time for breast tissue to regenerate good cells and age matters. Just get through every day knowing it will be ok! Am lucky it was caught immediately. Radiation was my only choice not that I wanted it badly but knew something had to conclude this lumpectomy. I just believe we take each day as a gift and enjoy the blessings of every cancer free moment 🌈take care

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@windsurfer7

Thank you for the tips! Helps to hear what has worked you! My sister sews, too, so I'll have to keep that in mind.

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I found a on-line pattern for the mastectomy pillow and made one in a couple of hours in a pretty pattern a couple of days before I had my bilateral. I used it for about the first month, until I had the drains and stitches removed. I'm not sure what I'll do with it now - but it was really helpful after surgery.

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@windsurfer7

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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I decided on Mayo after I was diagnosed because I had several friends who had been there and were pleased with the care. I've been very pleased with the care teams and doctors throughout the whole process.

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@bpknitter53

I found a on-line pattern for the mastectomy pillow and made one in a couple of hours in a pretty pattern a couple of days before I had my bilateral. I used it for about the first month, until I had the drains and stitches removed. I'm not sure what I'll do with it now - but it was really helpful after surgery.

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give it to the cancer clinic. Thats what I did with all my accessories.

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