1. < Breast Cancer

How can this be?

Posted by whyme2023 @whyme2023, Jun 22, 2023

I was diagnosed with DCIS, Stage 0, ER/PR+, dense breasts - was told “treatable/curable”. Had 2 biopsies, an ultrasound and an MRI prior to surgery. Lumpectomy was done 2 weeks ago - carcinoma was MUCH larger than expected when it was removed (expected 1cm vs 6.5cm actually removed). 4 lymph nodes removed, all negative. Clear margins were NOT obtained. Surgeon is concerned because the MRI didn’t show the size of what was removed and is uncertain how to “follow me” in the future - for fear mammograms and MRIs will miss something in the future. Surgeon reviewed with her peer board and the majority think a mastectomy is the best route versus going back in for clear margins.
I can’t fathom why such a drastic step when I’m told my cancer is “treatable/curable”. I never imagined going that route and I’m still thinking do the 2nd surgery and hope for clear margins. If clear margins are obtained then we’d move to radiation and endocrine therapy. If clear margins aren’t obtained in 2nd surgery consider a 3rd for clear margins OR consider mastectomy.
I’m generally a step by step person - try things in a crawl, walk, run fashion - at this stage I’m thinking a mastectomy is a drastic step - I’d like to go the route of the 2nd surgery in an attempt for clear margins. HOWEVER, i would like to know what the data shows for how much a mastectomy reduces the chances of the cancer coming back.
Does anyone know where to find this data? Was/is anyone in this same predicament and how are you making your decision? If you’ve already decided how you’ll proceed, how did you arrive at this decision? If you’ve moved forward, how’s it going? I appreciate ALL feedback, as it’ll be good food for thought for me as I ultimately make the decision that works best for me.
Thanks in advance!!

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conk | @conk | Jul 11, 2023

I was diagnosed with DCIS and after a lumpectomy found that I had an additional cancer. I didn't mess around and went to MD Anderson for a bilateral mastectomy. Here's what you want to keep thinking. It is treatable/curable! It may not be exactly what you want, but you can have it treated and cured!

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cherziggy | @cherziggy | Jul 11, 2023
In reply to @mossa "I had radiation on left side. The radiologist used image guided radiation (IGRT) and a breathing..." + (show)
@mossa

I had radiation on left side. The radiologist used image guided radiation (IGRT) and a breathing technique called deep inspiration breath hold-this helps to move heart down into chest. There was also an upper body mold made so that I was always in exact position. I know radiation sounds scary.

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Thank you! I am going to do prone on my tummy instead of the breath holding. I get fitted for my mold tomorrow. Your reply made me feel better!

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whyme2023 | @whyme2023 | Jul 11, 2023
In reply to @salamander "Are you going to take tamoxifen?" + (show)
@salamander

Are you going to take tamoxifen?

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I have not had radiation yet, so nothing has been prescribed yet.

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colorado73 | @colorado73 | Jul 12, 2023

Glad to hear your surgery went good! Great news!🎉
I had to choose double mastectomy due to my gene mutation of multiple cancers. Recovery was hard, a year ago. No radiation or chemo was needed cause of clear margins. I had thyroid & skin cancer later on. Had to have thyroid removed due to in the family & risk of coming back as well.
Good luck to you!

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1 reply
whyme2023 | @whyme2023 | Jul 12, 2023
In reply to @colorado73 "Glad to hear your surgery went good! Great news!🎉 I had to choose double mastectomy due..." + (show)
@colorado73

Glad to hear your surgery went good! Great news!🎉
I had to choose double mastectomy due to my gene mutation of multiple cancers. Recovery was hard, a year ago. No radiation or chemo was needed cause of clear margins. I had thyroid & skin cancer later on. Had to have thyroid removed due to in the family & risk of coming back as well.
Good luck to you!

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Thank you and I hope you continue to have positive experiences in your journey going forward.

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1 reply
colorado73 | @colorado73 | Jul 12, 2023
In reply to @whyme2023 "Thank you and I hope you continue to have positive experiences in your journey going forward." + (show)
@whyme2023

Thank you and I hope you continue to have positive experiences in your journey going forward.

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Thank you. I'm definitely trying. It's a HARD road but I'm trying to stay positive. I'm actually at my OT appointment today. She helps with lymphedema in my right arm & chest wall. I recommend it to everyone that's had lymph nodes removed.

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2 replies
whyme2023 | @whyme2023 | Jul 12, 2023
In reply to @colorado73 "Thank you. I'm definitely trying. It's a HARD road but I'm trying to stay positive. I'm..." + (show)
@colorado73

Thank you. I'm definitely trying. It's a HARD road but I'm trying to stay positive. I'm actually at my OT appointment today. She helps with lymphedema in my right arm & chest wall. I recommend it to everyone that's had lymph nodes removed.

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I had my post op appointment today with the surgeon (things are healing well 🙏). I will see the OT in the next few days. We have to remember to stay positive. Hang in there - we’ve got this!!

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1 reply
colorado73 | @colorado73 | Jul 12, 2023
In reply to @whyme2023 "I had my post op appointment today with the surgeon (things are healing well 🙏). I..." + (show)
@whyme2023

I had my post op appointment today with the surgeon (things are healing well 🙏). I will see the OT in the next few days. We have to remember to stay positive. Hang in there - we’ve got this!!

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That's great!!
Yes, we've got this!!
Thank you 😊

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maggieb892 | @maggieb892 | Jul 13, 2023
In reply to @colorado73 "Thank you. I'm definitely trying. It's a HARD road but I'm trying to stay positive. I'm..." + (show)
@colorado73

Thank you. I'm definitely trying. It's a HARD road but I'm trying to stay positive. I'm actually at my OT appointment today. She helps with lymphedema in my right arm & chest wall. I recommend it to everyone that's had lymph nodes removed.

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I agree. My OT has reminded me of the conditions I should keep in mind as I check myself in the mirror or feel on my breast. I had a very stressful week and then flight home from Albany, NY to Denver, Co. I developed lymphedia in my breast. I developed a mild case of it post radiation and it got a little worse after reconstruction (4/23). I noticed that the OT was "studying" my incision on 6/28. 4 days later I was acting strange: weepy, and a little nauseous after eating. By the fourth of July, I was in the ER because of in infection in what I thought was a healed scar. I'm on my second week of heavy duty antibiotics and have seen the plastic surgeon twice since the fourth. I go again tomorrow. I'm feeling blessed that I have been given the knowledge to keep on top of the possible effects that follow Cancer around.
I will sing my OT's praises forever!

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2 replies
colorado73 | @colorado73 | Jul 13, 2023
In reply to @maggieb892 "I agree. My OT has reminded me of the conditions I should keep in mind as..." + (show)
@maggieb892

I agree. My OT has reminded me of the conditions I should keep in mind as I check myself in the mirror or feel on my breast. I had a very stressful week and then flight home from Albany, NY to Denver, Co. I developed lymphedia in my breast. I developed a mild case of it post radiation and it got a little worse after reconstruction (4/23). I noticed that the OT was "studying" my incision on 6/28. 4 days later I was acting strange: weepy, and a little nauseous after eating. By the fourth of July, I was in the ER because of in infection in what I thought was a healed scar. I'm on my second week of heavy duty antibiotics and have seen the plastic surgeon twice since the fourth. I go again tomorrow. I'm feeling blessed that I have been given the knowledge to keep on top of the possible effects that follow Cancer around.
I will sing my OT's praises forever!

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Oh my Hun!!!! I'm SO sorry!!!! Yes absolutely blessed for a great OT!! Mine is fantastic as well. She's keeping eyes on my scars & arms as well. I pray you start feeling better soon.
God bless!

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