Is my doctor crazy not to order follow-up tests?

I agree with vhqh. It makes no sense to me that finding mets earlier doesn't make a difference. Mets is not "cureable", but the quality of life of someone with a solitary bone met, for instance, is surely more comfortable than one with extensive mets.

It's hard to wrap my head around the fact that the literature and "pink" campaigns scream "early detection" and once cancer HAS been detected, we're supposed to do a 180 and not worry about early detection of mets.

So, your doctor is not necessarily crazy as he/she is following generally accepted guidelines--but, if you do not have a comfort level with the follow-up plan, you should definitely pursue a different plan.

DIane 

Neither of my oncologists order scans w/o symptoms... If I pushed it, they would, but it isn't the "standard of care."

The logic is that once you are stage IV, all treatments are just about managing symptoms. Data says there is not a survival benefit from detection prior to becoming symptomatic. If you don't have symptoms, there isn't a treatment. Therefore, you get all the anxiety, have a bunch of biopsies, possibly go back into chemo, and don't get to live any longer. On the other hand, if mets aren't "found early" you'll have the same eventual course of treatment, but a few more months of ignorant bliss on the front-end.

I'm on bisphosphonates to prevent bone mets (clinical trial) which would be the same thing they'd give me if they found mets, so I feel like that one is covered. There are a few preventative things you can do, if your onc and insurance will allow.

In some places, they do scan. I have Canadian friends who get "baseline scans" after chemo...  

Really, it is a personal choice. Does the relief of scanning clean outweigh the chance of NOT being NED?  As a Stage III, both choices have validity. 

Stephanie

I wanted a baseline normal PET scan.  I told my oncologist that my fatigue was so debilitating (and it was) that I would like to have one to see if anything lit up since it was found that my tumor had been in my breast for over 2 years (seen on 2004 mammogram) before it was surgically excised.  ugh...

Hi sisters, as I have said over and over, we get NOTHING in California, on HMO's, and I mean nothing.  But I cheer myself up with Dr. Love, who says you will know soon enough about mets, and why do you want to know 6 months sooner?  It was a valid opinion, you may agree or not.  She was referring, of course, to the fact that this is eventually fatal, and so why ruin an extra 6 months, by knowing sooner?

But the recurrence thing is quite different.  However, it should be easily found with a mammo every 6 months.  That is what I did.  Then, after 5 years, the last 5 years have been once a year.

Sighh, I have also noticed, and this is a little sad, if you have super good insurance, you get a lot more done.  If you have HMO or another kind of the same thing, minimal work is done.

So if you are going to worry  a lot, then either get it done on your own if the insurance won't pay, or just insist with them.  Some insurance Co's, deny the first request routinely, maybe even the second, but if you threaten them with the State Insurance Oversight Committee, they usually buckle.

After a few years, this constant fear does get a lot better, as you get more confidence in your body, the dirty traitor!  But this takes time.  And I still never have a headache, even after 10 years it is a brain met.

Silly me, hugs to all, Shirlann