Frequency of testing for no mets and NED, HER2+++?

[Guest-AlaskaAngel_*]

I am 2 yrs from tx, 3 years from dx, no scheduled checkup with onc ever, and a long way from onc... I see my internist every 6 months plus have CA 15-3, liver function tests and a CBC every 6 months, annual mammogram, but no other scheduled scans for bc.

(I do get annual transvaginal ultrasound as part of a clinical trial for ovarian cancer, plus quarterly CA-125 for that).

I see from other posts that some have had zero symptoms and then discovered brain mets, and wonder what others would suggest for tests to have on a scheduled basis?

[StephN]

Hi AA -
Is it possible to get the CA27-29 marker test instead of the 15-3??
They switched at SCCA in favor of the CA27-29 as they feel it is a better test.
Is your internist the closest you can get to seeing a good oncologist up there??
Be vigilent about ANY pain and complain immediately, demanding the most advanced CT or PET you can get.
What did you med onc have to answer to this question?

[Guest-AlaskaAngel_*]

The hospital here stopped offering the CA 27-29 that my internist had me get every 3 months. They PROMISED to at least do one set of duplicate tests so that I would have some kind of baseline to start out with on the CA 15-3, but didn't do it. I have 2 CA 15-3's so far, both low, 3 months apart. I didn't know which test was best but suspected the CA 27-29 was a little better; thanks for the info.

The onc in Seattle is available for appointments but none are scheduled for me, and I try to go through my internist as much as possible since he can physically evaluate me and knows me much better.

I did see the onc in November, 2003 and he made no recommendations for any scans or tests of any kind. There are no oncologists here.

I have the average pains that we all wonder about, but lately have had weird pains inside my skull that I notice most at night. We do have an MRI machine here in town, although I don't trust the readings as much as I do for imaging that I get in Seattle. I might be able to get one more overnight visit in Seattle soon so I'm wondering what y'all think about any particular imaging based on being HER2+++.

Listening,

A.A.

[Kristen]

Alaska Angel,

I would go and have a MRI done, if this has lasted more than 2 weeks.

My onc is not much in favor of the tumor markers or scans, but they are important to me. She is going to start CA 27-29 and CE-15. I looked up what was the best kind and though there were lots of studies, none particuraly pertained to HER2. Not surprising. The one I found said that CA27-29 had a better read on recurs for bone than CE-15 and CE-15 was good for local recurs. The CA 27-29 (in this study) said they caught the cancer on an average of 3 months before symptoms set in.

I am just starting out of my protective haven with Herceptin and will have the 3 month check ups for 2 years. Since you are out 2, I would hope someone is checking you out at least every 6 months. Are you seeing your internist every 6? I would ask them to continue running TM's and having a physical and chest and mams.

I hope that the feeling in your head is nothing more than some weird feeling, but as everyone says, stay in touch with your body and gut instincts. Take Care AA. K

[Guest-Lolly_*]

Hi Alaska,
I think if you continue to have head pain, you should try to get it checked out by MRI, although it does sound like a bit of hassel...Otherwise, it sounds to me like you're doing all the right things; 6 month checkups by a trusted MD who listens to you, the TM's, etc.
I have the CEA tm, that's the only one that has ever shown an increase when I have active cancer, but it's not generally considered a very good marker for bc. IF you have symptoms that need to be checked out, CT scans usually pick up areas of concern which can then be investigated further by biopsy if possible, or PET or MRI.
The main thing is to bring any concern to your MD's attention, and talk it through to decide the best course of action for your level of concern and circumstances. Nothing you don't already know, I guess, but sometimes it helps to have it affirmed. Take care.

Love, Lolly

[AlaskaAngel]

Thank you for the thoughtful responses. Getting my ducks lined up for any evaluations or tests in Seattle takes some real coordination from here as I never know how long I have to stay there or who I will need to schedule to see depending on the results.

I got back some lab results today from last week's tests, and both the liver function tests and the alk-phos have risen and are too high. I am going to repeat them and then see what my internist thinks...

-Not freaking out, but keeping track,

Thanks

A.A.