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

I had invasive grade 2 with lymphovascular invasion, and double mastectomy. Because mine was ER+ I did 5 years of meds and saw doc twice a year. After 5 years, no appointments even though risk for ER+ rises. I read that with ER- if you make it 5 years without recurrence, you are very low risk (different from ER+).

Some docs do cancer markers and other blood tests. I am 9 years out and considering asking for a second opinion for my 10 year anniversary! Good luck!

Thanks for that - everyone's journey can be so different. Ive asked my specialist at cedars what else i can do besides just the physicals every 6 months. People say oh its great you only had DCIS but the worry dosent go away and I feel this is compounded with the fact mine was aggressive and hid so well for Im guessing many years - i suspect I had it for 3/4 years before it was found at least.

And yes I read also how the reoccurrence rates for hormone positive and negative differ and change over length of time - how strange this is. Its all so complex but I keep saying the risk is individualised so why cant we get tests that take this into account when it comes to monitoring.

I have been concerned about unusual hip pain twice, and my oncologist just referred me back to PCP for x-ray. I believe it is a bone spur pressing on a nerve and not cancer. Basically after 5 years we are kind of discharged! With double mastectomy and DCIS you have a great chance. I dislike the term "survivor"!

Just want to agree that I find it surprising that future diagnostics are mainly noticing vague symptoms like headaches or bone pain. I can get both of those regularly while on an AI. To me, this emphasizes why staying on an AI (or tamoxifen) if at all possible is so important. As much as I disliked getting mammograms, they certainly pick up issues.

I have very recently been diagnosed with DCIS. This is a new journey and I am scheduled in to see a Dr for the next steps.
In researching I have come across Digital Infrared Thermal Imaging. This may be an option for you in conjunction with other types of monitoring.
I wish you the best!

Best of luck with your journey - I hope it all works out with the best possible outcome. I did come across type of imaging but its not FDA approved for breast cancer screening due to lack of evidence currently. I've asked my specialist about getting Ultrasounds as this seems to be the most reasonable option and hopefully is covered by insurance - in an ideal world it would be an MRI but insurance wont cover this. Thanks

I had disc triple negative (positive for nothing) Stage 3B, in 2020. After all treatments at UCLA monitoring became bloodwork every 3 months, mammo every year/MRI every year so spaced one or another every 6 months, and Pet/CT scan yearly.

Now that things have continued to be negative for a reoccurrence we've switched to yearly CTs, and just now going to expand bloodwork to every 4 months instead of 3, still doing either a mammogram or MRI every six months.

My mammogram is only for the left side which did not get the cancer, ergo the MRI to check the right after mastectomy, maybe you can see about a yearly MRI or at least ultrasound for peace of mind?

I did also have genetic testing done, negative for BRCA 1 and BRCA 2.

I was 38 when diagnosed which factors into my monitoring, also the speed of the original cancer (Stage 2 to 3B in under 2 months.)

Sounds like you are getting great advice, par for the course for the Mayo Boards ☺️. Good luck!

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.

So far I feel like a chemo -- as opposed to cancer -- "survivor." I don't like the "survivor" terminology, either. I'm also not keen on battle/fight analogies.

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