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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salamander | @salamander | Jun 25, 2023
In reply to @whyme2023 "Thanks for your reply - I have had one surgery (lumpectomy) and margins were not clear...." + (show)
@whyme2023

Thanks for your reply - I have had one surgery (lumpectomy) and margins were not clear. Currently I am opting for a 2nd surgery to hopefully get clear margins. I have not moved to the stage of radiation or pills yet due to the need for a 2nd surgery.
I too am a step by step person and want to take this slow since it is noninvasive and contained.
I am not ready to visit the mastectomy route. I feel my type of cancer and history affords me time to do the 2nd surgery and obtain a 2nd opinion. That is what I plan to do. 2nd surgery scheduled for 7/3.

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I am sure it will go well!
Let me know. I would do what you are doing.
Talk soon.

REPLY
salamander | @salamander | Jun 25, 2023
In reply to @whyme2023 "Thanks for your reply - I have had one surgery (lumpectomy) and margins were not clear...." + (show)
@whyme2023

Thanks for your reply - I have had one surgery (lumpectomy) and margins were not clear. Currently I am opting for a 2nd surgery to hopefully get clear margins. I have not moved to the stage of radiation or pills yet due to the need for a 2nd surgery.
I too am a step by step person and want to take this slow since it is noninvasive and contained.
I am not ready to visit the mastectomy route. I feel my type of cancer and history affords me time to do the 2nd surgery and obtain a 2nd opinion. That is what I plan to do. 2nd surgery scheduled for 7/3.

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Looks like we are the same age. Are you perimenopausal?

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salamander | @salamander | Jun 25, 2023

Not sure where to post this but why can’t you take a lower dose tamoxifen? I read a study that if you have DCIS lower dose tam works - for 3.5 yrs.
I would like that but mine is invasive.

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kseanob | @kseanob | Jun 26, 2023

I would say get a second opinion. Yet....if your surgeon took it to the tumor board of her hospital, it appears they're all on the same page. At this stage (no pun intended) you might go to someone at a different hospital for a second opinion, if that's possible in your area. My thinking is there might be "office politics" reasons why the hospital tumor board doesn't want disagree with your surgeon. I think you should take that step just for your own long-term peace of mind. You want to head into a mastectomy knowing it's for the best, and don't want to be second-guessing your choice down the road. Just my two cents.

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whyme2023 | @whyme2023 | Jul 9, 2023

UPDATE to: How can this be? How do I proceed?

I had the second surgery, Monday, 7/3 in hopes of getting clear margins. It was successful 🙏🎉❤️🙏🎉❤️ Now to heal and move to the radiation stage. I’m so happy and thankful!!

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1 reply
salamander | @salamander | Jul 9, 2023
In reply to @whyme2023 "UPDATE to: How can this be? How do I proceed? I had the second surgery, Monday,..." + (show)
@whyme2023

UPDATE to: How can this be? How do I proceed?

I had the second surgery, Monday, 7/3 in hopes of getting clear margins. It was successful 🙏🎉❤️🙏🎉❤️ Now to heal and move to the radiation stage. I’m so happy and thankful!!

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So happy
For you. Go girl!
I had no issues with radiation. Just still grappling with this diagnosis so stress related fatigue. No skin issues. Just use hydrocortizone as necessary.

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1 reply
cherziggy | @cherziggy | Jul 10, 2023
In reply to @salamander "So happy For you. Go girl! I had no issues with radiation. Just still grappling with..." + (show)
@salamander

So happy
For you. Go girl!
I had no issues with radiation. Just still grappling with this diagnosis so stress related fatigue. No skin issues. Just use hydrocortizone as necessary.

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Hello! I’m getting fitted for radiation next week. I’m still on the fence about traditional vs. proton therapy. I’m terrified about heart damage because because it is my left side.
I’m so happy that you had no issues with it! Which type did you choose?

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1 reply
salamander | @salamander | Jul 10, 2023

I did concider proton but was introduced to normal radiation for 5 days so I decided on that.
Higher dose of radiation target at tumor bed which was also left breast. Small tumor! 4 mm with clean margins (another 2mm).
Proton I think is a long stint and you still can get skin issues, etc. I think. Not a dr. But my quick research when I was trying to get different opinions.

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salamander | @salamander | Jul 10, 2023
In reply to @whyme2023 "Thanks for your reply - I have had one surgery (lumpectomy) and margins were not clear...." + (show)
@whyme2023

Thanks for your reply - I have had one surgery (lumpectomy) and margins were not clear. Currently I am opting for a 2nd surgery to hopefully get clear margins. I have not moved to the stage of radiation or pills yet due to the need for a 2nd surgery.
I too am a step by step person and want to take this slow since it is noninvasive and contained.
I am not ready to visit the mastectomy route. I feel my type of cancer and history affords me time to do the 2nd surgery and obtain a 2nd opinion. That is what I plan to do. 2nd surgery scheduled for 7/3.

Jump to this post

Are you going to take tamoxifen?

REPLY
1 reply
mossa | @mossa | Jul 11, 2023
In reply to @cherziggy "Hello! I’m getting fitted for radiation next week. I’m still on the fence about traditional vs...." + (show)
@cherziggy

Hello! I’m getting fitted for radiation next week. I’m still on the fence about traditional vs. proton therapy. I’m terrified about heart damage because because it is my left side.
I’m so happy that you had no issues with it! Which type did you choose?

Jump to this post

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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