Stage I sisters... did you get any SCANS??

I am nearly 4 years out (will be in March), and so far, no scans have been ordered. I get tumor markers, which frankly I find to be nerve-racking enough!! 

I'm a year and a half past my diagnosis, and I've never had any scans.  My onc says they're not indicated in my case.  He's said that research has shown that women who get diagnosed with a recurrence on a routine scan and women who have symptoms and then are diagnosed with a recurrence have equal life expectancy.  The small amount of time between when a scan can see something and when we could feel something is usually short and the small delay does not effect survival rates/times.  But...I sometimes think I might feel better knowing that a scan is clear.  But...then again, I really don't want them to find anything!

Harley,

My oncs are very proactive when I mention something.  My rads onc scheduled a nuclear bone scan after I was done with rads due to rib pain (found nothing).  My med onc had me do a CT scan for a baseline and then followed up at 6 months post tx.  This year I had a couple of issues so I had another nuclear bone scan (for shoulder pain) and another CT (for uterine issues - familiar?).  Bone scan was clear, CT showed an abnormal sized uterus and cysts on my ovaries.  Had TAH-BSO on 12-29-09 - Sorry I digress!   

I also get regular blood work at my 6 month check ups. 

Hugs to all!

Trish

Harley, My mom was dx in 2001, had single mast, did rads and chemo due to some positive nodes. Her oncologist hasn't had her do any scans only the tumor marker blood test. Like Kate said he felt that it wasn't necessary for all the scans after a dx unless there are symptoms. I was stage 0 and havn't had any tests either. I am not even on tamox due to bilat mast and side effects that I had after taking it for 6 months due to 2 dx of ADH.

Sheila

I didn't have any scans either and I am Stage 2b.  There was no evidence that anything had spread beyond the immediate breast/lymph node area and all my other functions tested out just fine.  If anything has spread, it is still at the microscopic level, so it wouldn't show up anyway.  And that is the reason for the kick-butt chemo I am undergoing.

If you think about it, scans can actually be misleading and give a sense that all is OK where it may not be.  I also agree about the unnecessary cost. I will most likely have a bone density scan at the end of chemo, but that is because of the need to assess to what extent I have any bone loss.  It will also pick up anything else going on in my hips and spine.

I do know someone who has every scan known to medicine done every year and is urging me to do the same.  Just can't see doing this.  On top of this, since I am in the global study, I am being much more closely monitored than most patients.

So really have to go with "less is more" here.  Minimal benefit, and potentially misleading results.  Just not worth it.

I am Stage I....clean margins, negative sentinel node....protocol for my Onc was to have me do a full body Bone Scan immediately after I completed treatment....expected to be negative....and was....cept for a few spots of arthritic changes....to be used as a baseline for any future bone pain requiring a scan be it arthritic in nature or anything else, ie metastatic

Harley.....

She should believe the oncologist.  One of the primary reasons for not doing whole body scans among patients who have not had cancer is because there are so many false positives.  But your friend may want to consult with another oncologist to be sure.

I would question why scans every three months as well.  That is unless there is something going on they need to watch very closely via scans.

BTW - am expecting my bone scan to turn up tons of arthritis as well. 

My guess would be that her oncologist already knows that the scans will most likely be fine just from her blood work.  Still would check elsewhere though.  Or ask her primary (who I would not expect not to be expert in this area) just exactly he or she means by "lesions everywhere".

Your friend with bone mets to her shoulder was symptomatic....she had pain.  That is why they looked.  So a major lesson to get anything symptomatic checked out ASAP.

Harley, I wonder about this exact same thing often.  I never had any pretreatment scans except a chest xray.  I wonder all the time ------- how do they KNOW it wasn't anywhere else at diagnosis?  I only had the one lymph node out (Sentinel) but then I worrry, what if one of the others was positive.  Then I start worrying about the intramammary ones because I had an inner tumor right in the cleavage area.  My profile in the doctor's computer doesn't even list me as officially stage 1 because no scans were ever done beforehand.  It has an "X" where they usually put the number of stage.  Everytime I ask, she just says, well, we have to assume you were stage 1.  Boy that comforts me!

 She did mention one time about getting a full body CT scan (for a baseline) when done with chemo, but then rads were thrown in at the last minute so she said, "They're going to xray you like crazy.  I don't want to do a CT scan at the same time as all that!"  Sooooo does that mean I'm not ever going to get my CT scan?  I'm waiting for the right time to ask her that!

I was given the  exact same explanation as Southport.  We are both from Maryland so I wonder if we have the same onc!  I have had a couple of CT scans, but they were due to coughing after surgery that wouldn't go away.  Everything seems to be OK and oncologist doesn't do scans or markers unless "they are indicated".

See, that's what I mean!  Lots of women had at least one full body scan after surgery, but before chemo to determine the stage.  How do they know when they removed my small but aggressive tumor that it was no where else if they didn't check???!!!  It makes me nervous just thinking about how they can't really say for sure that I'm stage 1.   

Harley, my sarcastic comment for the day is that perhaps some doctors are trying to maximize their profits when they order tests that are not the standard of care.    Or at the least, they are practicing defensive medicine.

Well, I don't know if the rest of the world follows Ireland's standard. 

 The purpose of chemo, rads and harmonal treatment if er+ is to prevent a recurrence.  Everything I've read said that diagnosing mets before someone is symptomatic doesn't significantly  extend survival time. So I don't see how more money could be made by diagnosing a recurrence earlier.  There is money to be made in testing.

Off topic, but  pertaining to the topic of unnecessary tests.  My gyn wants me to have a vaginal ultrasound every year because I am taking tamoxifen.   I've read the  ACO guidelines and they  do not recommend routine ultrasounds in the absence of symptoms.  I have no symptoms and I have no doubt that my gyn is trying to increase the amount of money coming into her practice.  I will not have an unnecessary, uncomfortable test unless it is called for.  

Harley-----I do not know about other places but I go to MD Anderson and it IS the standard of care there. I had scans prior to the lumpectomy too.......this was to make sure that there was no evidence of it anywhere else before they started a treatment plan. Then they proceeded with the lumpectomy and SNB. It was after this that they did the baseline nuclear bone scan. The bone density was also done prior to starting the Arimidex.

Wishing you zero side effects with the Femara.

Pat