How to monitor for reoccurring BC after double mastectomy?

Posted by Rom828 @jgallagher04921, May 29, 2023

I have been told that since I had a double mastectomy, I would not have any future imaging...no mammogram, ultrasound, mri etc, but to just keep drs informed of my health. Does this mean if I do notice any health changes ( aside from hormone blocking therapy side effects) would this mean I likely will not know if the BC has returned until its already in stage 4?

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@gina5009

Hold On! not all second or third cancers are Stage 4, just new cancers. I had breast cancer at 36, Dermatofiibrosarcoma 20 years later, and Squamous Cell Cancer 35 years after that. None of them Stage 4.
Gina5009

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True @gina5009. I was referring exclusively to breast cancer recurrence, specifically for those of us with double mastectomies. The chance of a new primary breast cancer is low for us.

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@windyshores

I figure that without breasts, chances are any cancer recurrence will be stage 4 anyway. I mean, there are exceptions but the likelihood is that it will be in bones, lungs, liver, brain, or GI etc. etc. not local or regional.

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@windyshores -- You are right that if someone with a double mastectomy has a recurrence it's likely going to be stage 4. That being said, it's still advantageous to find stage 4 as early as possible before it's everywhere and you have symptoms. Less to battle, better chance of holding it at bay with treatment and still having more time to enjoy life. Stay vigilant.

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The ASCO 2023 annual meeting is this weekend in Chicago - was hoping there would be some discussion regarding liquid biopsies. Our best hope as we all know is early detection - I'm hoping my 19 radiation treatments and letrozole will kill any evaders from my ILC in a very dense breast - waiting a year for a diagnostic mammo as my oncologist feels any earlier not helpful given the way lumpectomy and radiation changes tissue. I do see my radiation oncologist for a 6 month check up in July and will ask if she feels the same although she usually defers to my oncologist. I will share any intel. xo

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@californiazebra

@windyshores -- You are right that if someone with a double mastectomy has a recurrence it's likely going to be stage 4. That being said, it's still advantageous to find stage 4 as early as possible before it's everywhere and you have symptoms. Less to battle, better chance of holding it at bay with treatment and still having more time to enjoy life. Stay vigilant.

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@californiazebra my point is there seems to be no easy way to catch it early. Hoping for progress with liquid biopsies as @semurrey mentioned!

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@windyshores

@californiazebra my point is there seems to be no easy way to catch it early. Hoping for progress with liquid biopsies as @semurrey mentioned!

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I embarked on the liquid biopsy journey… Signatera from NATERA. I received a negative result last month from first blood draw which was matched with positive tissue from surgery. I believe they track 15 DNA data points.

I see this as another tool in the proactive kit. I do get a mammo for natural breast and MRI ( both) annually alternating at 6 mos . And I take AI religiously!

I too am most interested in the liquid biopsy opportunities. So far there is uncertainty about what to “do” about a positive result. I was relieved to have gotten a negative result.

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I just wrote my original oncologist, who remains my main doc, and asked if they do Signatera or any other liquid biopsies. (I am going to have a repeat CT for lung nodule even though they are very very common. Repeat is recommended.)

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Even after mastectomy, you can still do MRI test. I had mastectomy last December and my surgeon ordered me MRI for this December. Best wishes to the recovery and never need to worry again!

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@windyshores

I just wrote my original oncologist, who remains my main doc, and asked if they do Signatera or any other liquid biopsies. (I am going to have a repeat CT for lung nodule even though they are very very common. Repeat is recommended.)

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I believe it was originally approved for colon cancer.

I too have nodules ( VERY common) that we have followed for 12 years now. They were detected on an x ray. Then CT ordered… and repeat CT for 2 more years. I accepted one more/no change and declined third CT ( too much radiation! ) and opted for x ray on third year. Just part of my body now I guess!

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@anjalima

I believe it was originally approved for colon cancer.

I too have nodules ( VERY common) that we have followed for 12 years now. They were detected on an x ray. Then CT ordered… and repeat CT for 2 more years. I accepted one more/no change and declined third CT ( too much radiation! ) and opted for x ray on third year. Just part of my body now I guess!

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My oncologist said they only use blood tests for stage 4 to monitor progress.

I am going to wait another year (two years total) for a repeat CT on the nodule. If an x-ray is good enough I will do that. It is solid, only 3mm, not very worried about it!

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@windyshores

My oncologist said they only use blood tests for stage 4 to monitor progress.

I am going to wait another year (two years total) for a repeat CT on the nodule. If an x-ray is good enough I will do that. It is solid, only 3mm, not very worried about it!

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They also use it to distinguish what “ type” of cancer may be metastatic in those who have multiple cancers. That said… they are inching into first line territory with VERY EARLY detections . For example if any detection my onco may start one in the CDK 4/6 meds rather that wait until a scan can pick it up in an actual location. Looks like 8-10 mos prior to what a scan can “ see”.

Let’s hope I ( and all of us) just stay negative!

Definitely new territory with exciting possibilities.

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