ER+ PR+ Her 2-, grade 3: I constantly worry about recurrence

Me too. DX March 2025 just had my first after treatment scan and am paranoid. It’s constantly on my mind. Especially since it was an aggressive tumor with a ki-67 of 93%. Oncotype of 56. I didn’t do radiation because I have heart issues. Mammo and ultrasound came back clear just waiting on the CT scan. Just have to learn to give it to God.

I was a year earlier - April 2023. Grade 2 idc, high Ki67 and oncotype positive. Did do chemo and radiation and now on ai therapy. Was put into “complete remission” status in July of last year but then in December, tumor markers went back up and have stayed there. Just went through another pet scan and brain mri and doesn’t really show anything so I’m in that “where do I go from here” gray zone. See oncologist on Monday and will see what he says but unsure if I’ll go further or just wait it out and stay in stress mode.

I can completely relate to your post. I was diagnosed in the summer of 2023, and I also deal with the fear of recurrence, especially since mine was grade 3 as well.

A few things have really helped me. Learning to meditate with positive mantras and focus on my breathing calms me when my mind drifts into dark places. I tell myself that I’ve done, and continue to do, everything my doctors have recommended. The odds are in my favor, and that is big.

Keeping busy helps a lot, too. When I’m focused on work or other parts of my life, I notice I think about it much less. I try not to spend too much time researching cancer, because that can really make me spiral.

Most of all, I think it helps to have someone you can talk to. None of it is easy, and I’m not sure the worry ever fully disappears. But there are ways to soften it, to turn down the volume a little, and that can make a real difference. Just remember that you're not alone. There are so many of us dealing with the same thing.

Hi! @mistymar :

I am so sorry that you feel anxious and frustrated being put in such a "grey zone":( However, we are so grateful to know that your recent PET scan and Brain MRI did not show anything abnormal, what a relief! For as I understand it, elevated levels of tumor markers do not definitively mean cancer; because they can be caused by noncancerous conditions like inflammation, infections, or benign tumors. Perhaps you may reach out to your primary care physician for further advice, for he/she knows your overall health better to assist in determining which factor(s) may cause this issue.

You are in our thoughts and prayers, @mistymar; for you are our comrade in this journey of fighting the disease of cancer. Wishing you all a better journey ahead with peace, hope and love from above!

@lifetraveler I had also read that other things can cause the markers to elevate. this time, he took me off the exemestane for a month (side effects did improve, I was actually less short of breath on exercise, able to get 6-7 hours sleep) and he rechecked in 6 weeks. Last time they elevated, was slowly over about 5 months then dropped back down within 1 month. This time, he gave it the 6 weeks before ordering the tests but it stayed elevated. Specifically asked if anything else could have caused it and he said in this case no. Felt we needed to look further and ordered the tests. Had recheck blood done this week and still elevated, see him Monday. He indicated he would want to do more tests (colonoscopy - but had one 2yrs ago) but as I said, not sure I want to pursue going through a bunch more tests without a clearer path on where to look. See PCP in May so will also see what he says. Not sure if less stress to live with this and not know (and constantly wonder) or to go through all the tests trying to find something. I do appreciate your comment and to clarify I actually did read that about the markers.

I am new in this journey. Masectomy Sept 25. Grade 3. Ki67 of 33. No cancer found in lymph, so no radiation needed and I chose not to do chemo. On AI.
Docs said I have a 30% chance of tumor cells floating around ib my body, but they didn't provide any testing advise on how to monitor. I would like to know how to test for this instead of the "wait and see" approach.
Could someone explain what the test(s) are for tumor markers? I am pursuing the Signatera test from Natera Labs for ctDNA. Is this appropriate? Are there other tests?
Appreciate this forum and your posts.

Did you do hormone therapy

@teenadann I am on anastrazole for 10 years. Been on year and half now.

I truly agree with all the comments about meditation . it helps you stay centered in the present and grounded in what is real right now. I focus on what is within my control to prevent recurrence, I pray to God for wisdom to understand the lesson this experience is trying to teach me, and I place all the uncertainty about the future in His hands.
Yes, I am afraid of losing my life—but more than that, I am afraid of living a life that isn’t truly worth living because it’s consumed by constant fear. That’s not the life I want.
So I’m choosing to build meaningful experiences and moments that are worth remembering. That would be my main advice: live in the present, because even the healthiest person has no guarantee of tomorrow.

@mistymar
I had/having my pre and post treatment (BM 2025) at one of the top breast cancer care centers in the country. Cancer markers are not even part of their treatment plan. I was informed (when asked) such markers are usually all over the place, not reliable in determining a reoccurrence, high markers can have many causes and actually considered "poor" treatment in the grand scheme of breast cancer treatment. My facility does perform cancer markers. I know every cancer center is different, every breast cancer treatment plan is different and, not to mention, every breast oncologist has their own treatment tool box & agenda. This is my personal experience. Hopefully this can give you a measure of comfort and do not put much stock in the cancer marker numbers fluctuating. I hope you can get your mind more settled and at peace right now. It's terrible to constantly be in stress mode. Your PET Scan and Brain MRI showed nothing. That's wonderful! Go with that, day by day. Find ways to reduce your stress, so very important as we all travel the cancer journey. Peace.