Anyone had cancer return while taking hormone therapy meds?

@lilacs777 as I wrote before, my doctors only use Signatera and other blood tests, for patients already diagnosed with metastasis, to measure effectiveness of treatment.

I am 10 years out and am mentally marking that anniversary with a wish for a check up but after a double mastectomy, none is offered. In fact, even though risk goes up for hormonal cancers as time goes on, I was discharged after my 5 years of letrozole.

That said, testing every few months after a primary cancer seems like an anxious way to live. As does too much focus on lifestyle management, but that's me. We are all different!

It seems that for stage 4, there is no concern about catching cancer early, on the part of the medical establishment. I don't know if early detection of stage 4 makes a difference: does anyone else know?

It is a tricky balance to stay vigilant but also put cancer on the back burner. Many of us never have recurrence or spread. I have not pursued any check ins other than a couple of hip x-rays over the years.

I couldn't find a local oncologist that would order it for me, which was frustrating. Signatera requires it to be ordered thru a doctor, you can't request it yourself directly. However, Dr Funk (the one who famously did Angelina Jolie's BMX) lets you order through her site - pink lotus. I think its really amazing she lets patients do that.

@windyshores In fact that was what I head as well from the oncos - that they typically will only do it for adv stage 3 or stage 4 b/c they're expecting mets. For me I'm less than 1 year post diagnosis so its a way for me to monitor that my newly started treatments are actually working as intended, with a goal of getting to that much coveted 10 year anniversary disease free and then many more hopefully after that! 🙂

@lilacs777 for those of us who are doing/have done an aromatase inhibitor, there is a Breast Cancer Index test to see if the meds are still doing anything. I am not aware of any way to test effectiveness of AI's for stage 1 primary cancers before 5 years. Would Signatera do that? Did you feel your treatment was thorough?

I had the BCI test when I hit 4 years of being on Anastrozole and I was stage 1. The challenge with the BCI test is it doesn't stratify between stage 1 and stage 2 I was told. So some Drs wont even order the BCI test for Stage 1. My Dr ordered it and it showed I would benefit from staying on an extra 5 years and would reduce my recurrence by another 50%. So I don't really know how to interpret this result given I was told the test doesn't stratify the results between stage 1 and stage 2. Has anyone else ever heard this?

Yes, I too wanted to avoid radiation! And I stick with AI as well. It appears there is no guarantee for any of our treatments.

Thank you for your well wishes. 🌸

Hi everyone,
Just wanted to let you all know that I saw a Naturopathic Oncologist today and she got my MRI moved up from August 30th to the 16th. So that’s good news.
She did a breast exam and said she felt 2 lumps (I can also feel 2 now). She said one felt long/maybe oval and the other felt round. Not sure what that really means but she did say that if the MRI can’t definitively say what they are, she will order a biopsy.
Just wanted to give an update!
Thanks!

Unfortunately yes. I had a double mastectomy in 2012 after having chemo. Was put on Tamoxifen 7.5 years. After I reached menopause my Oncologist switched me to Anastrozole and was on it for 6 months. I had back pain, discovered a painful lump in my clavicle shoulder area. PET scan later discovered breast cancer was found in my sternum, liver, bones, spine, abdomen and lymph nodes. A liver biopsy confirmed stage 4 ER+ Her2+ breast cancer had returned and spread in 2022. Did 6 Taxotere, Herceptin & Perjeta chemo infusions in 2022. Had slight progression and was switched to Enhertu Feb 2023. Completed 7 infusions but heart function declined and Enhertu was stopped. Scans showed stable from late 2023 and as recent as Feb 2024. I had a seizure in March 2024 and MRI showed I now have Mets to the brain and will be doing radiation to the brain next week.