CA 27-29 numbers rising: Does anyone else have an issue like this?

After 5 years of Femara, my oncologists no longer see me. I am curious what Dana Farber does that others don't. I have arthritis and osteoporosis which cause pain, as well as fractures and meds for bones that also cause pain. I am not sure how I would ever know that I had bone metastases.

It is amazing that all your oncologists still keep in contact with you. Due to covid, and my inability to take any of the AIs or tamoxifin due to side effects and my osteo, I have not seen or heard from my oncologist after my first mammo. I only see my dr once every 6 months now, and I tell him what tests I would like. Mainly bloodwork for colesterol etc. Crazy. I feel since I cant follow their protocol, I have been swpet aside. However I also seem to be doing better with a very healthy diet and weightloss.

So, I need to clarify that I went to them because from all I had read (from research papers, not the general internet) that at my age (which was 69 at the time, and postmenopausal) there had to be more than the "tried and true" tamoxifen for 5 years. Sure enough, when I went for the second opinion, the oncologist at DF suggested Tamoxifen for 2 years, the an aromatase inhibitor for 5-8 years after that. She also added Zometa for 2 years (now they suggest 3). So I have two oncologists: one here on Cape Cod (a hospital totally overwhelmed with cancer patients because of the Cape's demographic) and one at Dana Farber (who is heavily into research). I just want to make sure that I have access to the latest and greatest and I learned fast that you really have to advocate for yourself. So here's something helpful my DF oncologist told me the last time was I was there. I asked him the same question you raised: how do you know if it's cancer? His answer was simple, but very helpful. Anything (any spot) that doesn't go away, but instead gets worse, should be followed up on. Hope this helps.

If you were postmenopausal, usually you would get an aromatase inhibitor. So on the Cape they gave you tamoxifen? Was this a long time ago?

I advocate for myself. In fact, I sought 4 opinions on my treatment, three of them at major Boston hospitals including Dana Farber.

Regarding stage 4, I get the same answer, if a pain continues and worsens, get a scan. I have pain every day that gets worse. And lobular is hard to diagnose anyway. I just let it go.

I agree with the comment that if there is a new pain that doesn’t go away it needs to be investigated.
I am going to admit I don’t always practice this myself as I essentially fell through the cracks of covid. I have really just let myself be invisible to many of my doctors who are too overwhelmed with everything to really notice.
Pre-covid I was pretty stable with an oral medication and bone strengtheners, and Regular 3 month follow ups with everyone.
I still get my refills of oral cancer drugs and I had a bunch of dental work, so I am glad I fell off the edge in regards to the bone strengtheners, though I will return to them when the dental work is done.
I was passed to a cardiologist by my PC recently and he has decided that my problem is mostly my lungs (former smoker) with a bit of reversible shape change in my heart.
I don’t have any appointments with any doctor scheduled, I almost breathed a sigh of relief when I realized it. It might be nice to just slide for just a little while (not too long). It has been years since I didn’t have any appt. to be anxious about.
That being said, I would not hesitate to call someone if I felt something worrisome that didn’t go away.
@mdr3 @jeaniebean @windyshores have you tracked your tumor markers on a chart to see the trends or fluctuations?

I did 5 years of Femara and had osteoporosis before starting. I was not on meds either. Did you try an AI and experience side effects that were intolerable?

Noone does tumor markers for me. Docs don't believe it is helpful.

I asked my doctor about this test. Dr. Reed does not use this test as she said it's not that useful. Mixed research on how this test really is helpful. So she does not use it. On the other hand I had a woman I met that said they only found her cancer had returned by using this test.- she simply felt bad & knew something was wrong. It came back in her lymph nodes.

I wish there was a better way to detect metastases. It leaves us with a lot of uncertainty.

I tried all 4 available to me. Could not walk, swelling, really bad side effects. Onco even tried to get me pure AI without fillers. Took me 2 years to get back to normal and still cant bend my fingers.