Circulating tumor cells to determine risk of recurrence

I have been hanging in with Letrozole and started in Feb. Joint pain has improved - not sure if Tumeric and Omega 3 supplements have helped but I continue to take them as certainly not hurting. I've also started taking DIM as suggested - estrogen mgmt. I don't know why more onco don't recommend these blood tests to match with tumor markers and will be investigating. Early detection for mets is all we have and why do these docs think we will be anxious over false positives!! Do they suggest this worry for men and prostate cancer?? @ windyshores - I too have been told to see my PCP and don't see onco for a year and I'm at Dana Farber a specialty cancer center. Are these oncos overwhelmed - probably since Covid when they closed down so many onco treatment.

@semurrey I was discharged from oncology after finishing 5 years of letrozole. Even though the risk of recurrence goes up every year with hormonal cancers.

Are you aware of the science ( hypothesis) of why risk goes up ? Also, why not continue on AI?

Just look at the graphs on the Oncotype. And I have read many times that with triple negative, if you make it 5 years, your risk is low for recurrence but with ER+ the risk rises every year. My doc said the same thing. I don't know what others are hearing. Maybe docs don't tell them. Maybe people think they do 5 or 7 or 10 years of an AI and they are all set. We are not talking extremely high risk. In testing I seem to have gone from 6% risk of recurrence to 9 or 10% in 7 years.

I did a Breast Cancer Index test that showed no further benefit from an AI. I had severe osteoporosis when I started and my endo did not do Reclast because he was nervous about afib (since disproven) so my osteoporosis had worsened. I went on Tymlos and am going to finish with a dose of Reclast. One doc said I could do two more years later on which I might still ask about.
I miss the security of being on an AI!

Some people are doing 10 years of an AI but I would do a Breast Cancer Index to make sure it is still of benefit after 5 years.

Yes. I am aware of rising risk just wonder why?

Ugh

@anjalima good question! It may be statistical knowledge without researches knowing why. I am going to try to research it and let me know if you find out. I wonder if it is just that without meds, our estrogen and progesterone continue to be present from the adrenals-?

I try not to think about it . My Oncotype graph seemed to show concerning risk after 10 years and I am in year 9. But we could get lucky. I feel like I have to start living life after COVID and hurry up about it just in case, which is a kind of back burner anxiety.

I kept a study that showed that letrozole plus Reclast got rid of all residual cancer cells. I don't know where it is but that should give some hope if you had that regimen.

Did you do Predict Breast Cancer Tool or OncoAssist to determine exactly how much endocrine therapy helps you?

These oncology people (and I include everyone on the team in this) put way too much faith in Primary Care Providers. A lot of these people have had little experience with cancer patients. I know this. I had the "second cancer" to prove it, and it was due to lack of sufficient screening for my age, and lack of experience on the part of the practioner who saw me. I say advocate for yourself, do the research, then go to them and ask for what you want, or get a second opinion. The last time I went to DF I had a fistful of papers in my hand for the appointment. It turned out to be a wonderful conversation! Good doctors are never threatened by the patient asking questions and being informed. Now at my local hospital they are overwhelmed. The care I got in 2019 is nothing like what I would get now (why I ck into Boston hospitals for the big stuff). On this forum we have no idea what ages we're dealing with regarding the respondents. What I have noticed over time is that age does make a difference (levels of estrogen, time from menopause at diagnosis, even time from diagnosis and treatment, and all that stuff). I don't know why....just my observation. Never be afraid to question a treatment plan if your gut is telling you something other than what you're hearing.

I did not. In this case, with 98/99% estrogen positive, any reduction should be in my favor.