Anyone had cancer return while taking hormone therapy meds?

@lautwell
Thank you, I appreciate your responses so much!
You might have said this already, but how far apart was the 2nd cancer from the first?
I was diagnosed in May of 2023, so I keep thinking it’s too soon for it to be back in just a little over a year, especially while taking Tamoxifen.
But I suppose stranger things have happened…..

I was first diagnosed with a DCIS in 2020. I had a lumpectomy and radiation. It returned in the same area in 2022 so more chemo followed by hormone suppressant shots and pills. It returned again late 2023 and went to a node on the opposite side. I have been on paclitaxyl since January. Fortunately I feel fine, Just not a lot of energy. I am now 75 years old so thankful that this can be controlled.

@triciaot
Did they see the “lesion”/scar tissue on a mammogram?

It was an MRI. The radiologist said after considering what I had said about my original lesion - that is was not identified correctly at first because there was so little calcifications - that she changed what was planned to be a mammogram to a MRI.

Not said, but I suspect was also the case, they were watching that axillary lymph node (I didn’t know at the time that it was large) and it would not have appeared on the mammogram because of the location.

I do have dense breasts. My 2 year follow-up is a mammogram. But I will definitely be commenting during the scan and questioning them about spots that might not meet their criteria for calcifications.

So it was within the fives years of taking the medication or when you completed it?

@hikerlou I am 10 years out from a nasty grade 3 cancer with LVI, but no chemo according to the Oncotype. After my 5 years of letrozole my oncologist no longer sees me even though risk goes up with hormonal cancers. My oncologist does not do the cancer marker blood tests and Signatera is used only after stage 4 is diagnosed.

With 7 spinal osteoporotic fractures, cervical and lumbar stenosis, scoliosis, and osteoarthritis, of course I have pain so how am I supposed to tell if cancer has spread. Some of mine was lobular which is hard to image. I have no breasts to scan.

Can you make an appointment with your oncologist to discuss your current situation and ask about the next steps, follow-up testing etc? I found that we really have to be proactive and ask questions to get the care we need.

I am extremely proactive with my health, my kids' health and my mother's health. You have no idea. I have discussed the situation with my oncologist. Of course. No testing.

I got 4 opinions on treatment for my cancer in 2015, until I was satisfied. At the 10 year mark I will seek another opinion on this.

Without any breasts, there doesn't seem to be much follow-up with top oncologists.

That is so frustrating. After I had d finished all my treatment (Stage IIIB) my first question was “How will you follow up to make sure the cancer doesn’t come back?” The response at that time was we wait for symptoms, which as a nurse, I thought was inadequate. Had the NP not continued to follow the CA 27.29 and waited until I was symptomatic,I would be a very sick woman right now! My hope is that you can find some resolution.
It is very unsettling. My heart goes out to you.

There is local recurrence, a second primary cancer, and metastasis and I get confused on this thread about what we are discussing!

Since I had a double mastectomy I am primarily concerned with metastasis- cancer "spread," not cancer "return."

I asked my oncologist about Signatera and they only use it for those diagnosed with metastasis/stage 4. My oncologist basically discharged me at 5 years. They don't do any cancer markers. I know that risk continues to climb and I believe mine is around 10-12% at this point, maybe more.

I am not sure how we are supposed to catch metastasis. Other than imaging for something else. I agreed to an abdominal CT w/oral contrast. for a mere gas pain basically, despite my kidneys and sensitivity but oral vs IV contrast was, according to the report, "not sufficient" to see tumors. Lung CT had a nodule but that is common. Bones are painful all the time with 7 fractures, arthritis etc. I don't get it.