Stage II ladies, how often do you get PET/CT scans?

I just left my oncologist's office, and received my path report from my mastectomy last week.   I am stage 2, only one sentinel node was positive, all other nodes removed were negative. 

We talked about scanning -- initially she was going to order a PET Scan, due to my concern at an earlier consultation (i.e. emotional basket case) about wanting to rule out metastases prior to surgery, which she did not agree to.  She was ordering the PET Scan now due to those concerns.

Now that we have received the path report, and she was stating that the risk of mets is very low, and would only slightly alter the treatment plan, that it is not necessary to scan, it is my decision to make.  In most of her patients she would not scan, she was recommending only to ease my emotional state.   

Emotionally?  Can't go through with any more testing and waiting right now, and feel like a total baby about it.   Sounds like PET scans are pretty subject to quite a bit of false positive activity, leading to further biopsies, etc.   She is leaving the scanning decision up to me.   

Reading this thread has given me some insight that further scanning is not necessarily called for.  She has given me some time to decide, no urgency.   

Just expressing this is helpful, as has this thread. 

I am always amazed at the wide range of treatment protocol.  I had the run of the mill treatment..............lumpectomy, chemo, radiation and arimidex, which I have been taking for 20 months, but who's counting  At stage 2A, I am still considered early stage.

In my original screening process I did have a ct and bone scan.  I too asked about a petscan then and my onc said if nothing is suspicious on first scans there is no need.  I did have a couple of followup scans the first year.  Now there would only be a scan if symptoms appeared.  I now have become selective about scans because of all the radiation I have had.   I am much more in favor of mri's and ultrasouds when they can be used, because of limited risks in those procedures.

My followup care is bloodwork and onc visit every three months.  That is with my local onc.  I also go up to Moffitt CC twice a year for my mammo and mri (six months apart) and a review with that onc who was originally a second opinion and is now part of my team.  I will now see my rad onc once a  year, and that would have been the routine with the surgeon, until I had a case of mastitis a few months ago, so now I am on a three month cycle with him for awhile.

I feel I am monitored very closely.  Infact I am having my ALT/AST (liver enzymes) checked more frequently because they are slightly elevated.  Some things I now see my internist about.

I guess I got off the track, but no, I do not have scans, tumor markers, etc., routinely done.

Caren

Early Stage:  I am not sure how this is defined, but when I asked my breast surgeon if I was early stage, she said yes, it is considered so even though I had 2 nodes positive.

I am for one, relieved that no further scans are recommended unless there are symptoms.  Frankly, the anxiety of waiting on those tests was awful, in the beginning.  I wanted scans immediately, from my breast surgeon and she would not do them since she said the chances of mets were so small at that stage in the game.  I spent the next six or seven weeks being totally a wreck, imaginging that everything in my body was cancer somehow.  My oncologist did order them - CT of the lungs, abdomen and pelvis and one bone scan.  I was told that PTs have a higher instance of false positives. I hate the radiation I was exposed to, but I felt it needed to be done for my peace of mind and I didn't refuse them, even though I knew they could only pick up something over 1/2cm.  To move forward with chemo, I needed that mentally.

 The entire waiting game stinks--I will be glad that once I'm done with chemo it will be mostly follow ups and bloodwork and such for a while.   And to pray for no symptoms.....

Jan508,

Sorry I got the grade wrong, I thought it said 3 in your signature line.  I did not have a mammoprint, but my oncotype was 17.  I went ahead with the chemo because I was grade three (poorly differntiated) although I had no positive nodes.  My tumor was also on the large side,  3.5 cm.  Because I had a lumpectomy , I also needed to have rads.

I am still confused why there is such a long time between onc visits if you were recently diagnosed.  I agree with not having unneeded scans or treatment, but I do like having bloodwork and a visit every 3 months and I am two and half years out of dx.

Bone density tests are good every couple of years to check for osteoporosis, especially if you are on tamoxifin or arimidex, but very different than a bone scan.

The important thing is that you trust your doctor and you are comfortable with the decisions you make together for your care.  You sound like you are very comfortable with your protocol.

Caren

correction: my colonoscopy is due in DEC and I get a yearly physical (not a 10 year physical)