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DCIS Negative ER/PR - What tests can be done to monitor reoccurence?

Posted by gillbell84 @gillbell84, Feb 7 1:03pm

Hi I had DCIS negative ER/PR grade 3 extensive tumour and had bilateral mastecomy and reconstruction. Wondering what tests can be done to monitor any signs of reocurrence?

My breast oncologust has said check ups every 6 months for 2 years but there is no screening after a mastecomy. However my friend in Paris had the same surgery (although she had invasive and hormone +) and has blood tests for cancer marker and ultrasound.

Ive also come across Natera who have a test that assesses circulating tumour DNA in the body (ctDNA) and evidence of molecular residual disease but I cant find out if this is possible with DCIS diagnosis.

https://www.natera.com/oncology/signatera-advanced-cancer-detection/patients/signatera-for-breast-cancer/

Has anyone any insight as I am nervous that just physicals are not enough especially as DCIS tends to be none palpable and if it does come back there is a high chance of invasive.

Thanks

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gillbell84 | @gillbell84 | Feb 10 1:47pm
In reply to @windyshores "Just want to mention that the original poster, @gillbell84, had a double mastectomy so imaging of..." + (show)
@windyshores

Just want to mention that the original poster, @gillbell84, had a double mastectomy so imaging of breasts isn't relevant. And a triple negative diagnosis which means no aromatase inhibitors or tamoxifen.

I also had a double mastectomy and my docs don't do blood work or scans. In fact they don't even see me after 5 years. There is really no way to know about metastasis at present. People often tend to find out during testing or scans for another problem.

@gillbell84 what kinds of monitoring did you have in mind? Just curious. For some reason, approaching the 10 year mark is making me nervous.

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Thanks for sharing - I am double negative DCIS (ER/PR negative) which is less common so less research out there - they don’t test for HER2 when it’s DCIS. I’ve asked about ultrasound and bloods but just not sure they offer this for DCIS - I think it may come down to the rate of recurrence is so low and MRI is not considered medically necessary so insurance won’t cover it. I’m waiting to discuss ultrasound though. I just don’t feel confident that a physical check is enough.

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gillbell84 | @gillbell84 | Feb 10 2:03pm
In reply to @pbnew "I started a discussion on the Signatera test a couple of months ago. You might want..." + (show)
@pbnew

I started a discussion on the Signatera test a couple of months ago. You might want look at that.

Jump to this post

Thank you I had a look through it - I also asked my oncologist and she said it’s not needed for DCIS as it’s local breast cancer and Natera is for metastatic breast cancer. I’ll share what new info I get at my next check up with her. From all the research I can find so far on DCIS ER/PR negative with double mastectomy there is no recommendation that exists for screening post operation. If anyone does find anything would be grateful to be shared. What’s hard I think for me is if DCIS came back say in the skin how would I ever know?! I pray that this won’t ever happen but I got caught out once with this beast cancer hidding deep in my breast I won’t let it do that again.

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