Stage I, how do is NED/progression normally monitored?

whatz · 09-04-2009, 09:34 AM

I'm going into my second stage of chemo (done with Adriamycin/Cytoxan) starting with Taxol/Herceptin. I asked my onc yesterday how she was planning to monitor if I was NED. The response was with regular visits. I'm curious now... how is everybody else monitored that is Stage I and had the primary tumor removed (clear margins, negative nodes)? I assumed I would have a regular CT and/or MRI and/or blood tests checking tumor markers etc.

Laurel · 09-04-2009, 05:09 PM

I am a Stage I gal and I am only scanned if I have an issue pop up or I insist on an annual scan and or MRI. I know that there is a significant amount of radiation with the scans, so reducing exposure is wise, however I wish I had the assurance of a scan to alleviate my anxiety. Presently, I have an aching Lt hip. Naturally, I am concerned it is mets. Interestingly since discontinuing the Tamoxifen my hip is troubling me less. I will not even have any blood work except the standard CBC. I have renal studies and liver studies secondary to the Clondronate trial I am in otherwise I would not have those monitored.

Yes, at times I do feel as though I am flying blind!

BonnieR · 09-04-2009, 05:25 PM

As I understand it, follow up at this point is just 3 month check ups and lab work (includes periodic TM). Further tests would be done only if there were symptoms tht needed to be explored.

Jackie07 · 09-04-2009, 06:13 PM

Hi,

Just wanted to share my own experience because all the mammagrams, physicals, blood tests had missed my recurrence.

Please pay close attention to your own self-exam and report anything out of the ordinary.

09-04-2009, 11:59 PM

if Stage I, you are a lucky one. Regular mammograms, and whatever blood work your doctor suggests (i.e., tumor markers)

Don't stress. As a Stage I patient, you will most likely be fine.

whatz · 09-05-2009, 05:49 AM

Thanks ya'll for all the answers. I was just curious. Being still a relative newbie to this cancer game I just thought there would be a whole lot more monitoring considering we are told that Her2+ is agressive and just wanted to bounce off everybody else to see what your experiences were with your doc (and I do like my doc a lot, just feel better sometimes to get outside confirmation where I can clarify things with her). Yes, I've learned that as well that self-exams are probably the most important defense we as woman have against breast cancer and that you cannot rely on yearly mamograms alone. I try to make that a teaching point to everybody I talk to about cancer. Again, thanks! Ya'll are the greatest and I'm glad I can be part of this group.

CLTann · 09-05-2009, 06:22 AM

It is perfectly normal for patients to find out as early as possible if there is an abnormal new mets. You wonder whether tests should be done for all potential mets sites. It has already be pointed out to you that these scans add a great deal of radiation exposures to your body. Unfortunately, there is no cumulative data for any patients to know what total lifetime exposure she already had gotten. It is extremely dangerous to have a high cumulative radiation intake, since there is no reversal on this factor. My advice to people is to be less anxious about this problem. Look at this way, if you indeed had mets, the symptoms will become more and more obvious as time goes. For such worsening situation, yes, you should have that particular lesion checked out. The usual potential areas are bone, liver, lung and brain. Any discomfort in these areas warrant a scan if the discomfort did not go away. In the worst scenario, if you indeed had mets, there is not much significant difference in the treating method and prognosis of the new disease from a short delay. Most oncs subscribe to this line of thought altho some will not honestly tell you what they think lest they be targeted with lawsuits. Side effects from arimidex or other hormone agents are often the cause of pain and got many patients very uptight and upset. Best wishes.

DanaRT · 09-05-2009, 06:58 AM

Dear ahdubose,

I am a stage 1 NED patient too. I have had a concerns about this too. All three of my onco's have stated that I will not have scans or MRI's unless I had pain or trouble. There are times I worry.
Some survivors have told me that the dr.'s prefer not to do routine scans for 2 reasons-- extra radiation and if the patient does develope a questionable symptom the dr. will look back and say "well, you just had a bone scan 4 months ago and it looked clear." They aren't inclined to order a new one.

As a stage one survivor I was wondering if anyone is familiar with this clinical trial
http://clinicaltrials.gov/ct2/show/NCT00878709
it is the Neratinib Clinical Trial.

Thanks.
Hugs.
Love,
Dana

LoriE · 09-06-2009, 07:25 AM

My onc sees me twice a year and does no tests at all unless I have a symptom. Actually, I think we're taking it down to once a year soon as it will be 5 years for me. It used to really worry me but as time goes on it gets easier. I'm actually starting to believe that the beast isn't coming back.

suzan w · 09-14-2009, 06:37 PM

For the first 2 years I saw my onc. every 3 months with bloodwork and physical exam of scars(was having herceptin every 3 wks...with bloodwork the first year) Year 2-3, saw onc. every 6 mo., bloodwork and physical exam of scars. Year 4, saw onc. every 6 mo.,bloodwork and phys. exam. And now I will see her yearly!! XOX Suzan