HELP Monitoring of NED after initial treatments?

I am so CONFUSED!!! I have read from different woman on this site that their ONC's will do regular 3 -4 month scans, tumor markers, etc after initial treatment of chemo/rads for the first year. Let me say I realize that ONC's do thing individually. However, I was wondering if there is a Standard of Protocol??? I also realize that tumor markers are not always a reliable testing tool.

My concern is that during my initial staging I had all scans completed: *With some uncertainties:

-Bone Scan, -I was told of a spot on my 7th (left rib) ***I was told that they could NOT determine if the was cancer related or from a previous scar fracture from a life-time injuiry. ***They went with the benefit of the doubt (it was not cancerous related). *I was told that they were treating me as a Stage 3 A patient. When I asked whether or not in the future they would be able to be sure that is was NOT cancerous, I was told that after chemo treatments if the questionable spot (decreased or increased) it would likely be cancerous related to the bc because a scar form a previous rib fracture would always remain the same and not change in size or disappear.

-Chest X-ray -CLEAR

-Brain MRI -CLEAR***At my request because I was having vison changes and headaches-CLEAR (these symptons did disappear).

-Liver Scan/blood work -CLEAR

-Neck/Abdominal Scan *A spot showed up on my S1 that had NOT shown up on the bone scan

-MRI ***was done to have a closer look at the spot on my S1*They determined that this spot was a bone island. I have had pain in that spot off and on for a few years prior to my diagnosis of breast cancer.

My concerns:

During my first consultation (Nov 11/09) with my ONC just before my treatments began he did a brief physical. He asked me about and felt my rib area on my left side (asked whether I had pain). I was surprised because I had not pain (I was told then about the spot that showed up on the bone scan). By about Dec 15 I began to have a dull aching pain under my left breast (unaffected breast) near about the questionable area. Since then it has not really let up. The dull ache is constant. I realize that with 4 AC's, neulasta shots, 2 Taxol, 1 herceptin I am going to have aches and pains. I think I have done a good job at deciphering between which aches/pains I get with each treatment. These pains come and go with each treatment. But the rib section that I have explained (dull pain ache) that has become quite bothersome and is constant. I described this pain/symptom to my ONC's nurse on January 15 but it was not discussed with my ONC when I saw him because he was more concerned with my breathing issues and heaviness feeling in my heart that I was experincing (on my 3 AC). He ordered a chest X-ray and heart scan immediately and sent me to the hospital for tests before my scheduled 4 AC chemo that day. 

So yesterday, I brought it up to him knowing that I still have the pain and that my last chemo will be on March 9. I know that I will have a 3-4 week break before starting 7 weeks of rads. My thoughts are lets go back and re-look at that rib (see if there is change to it) and at the same time see if anything else shows up on bones. If haven forbid something changes my thoughts are we could treat it during radiation and or include another treatment plan re: bone mets. I asked him whether we would be doing any 3 months scans as it has been 3-4 months since my last scans. He says that he does not do scans that often. I have read on this site that woman have 3-4 months repeated scans within the first year.  This seems fair, otherwise how would one know if they are NED free???(until symptoms arise???) Wouldn't it be better to discover something sooner than later??? I have heard that is doesn't seem to affect survivability should something be found later than earlier. I met a woman yesterday at the cancer centre. She was diagnosed at 40 -June 08 (Stage 3 er/pr+, 10/21 nodes positive) had all scans done at initially staging except for Brain MRI (which seems that they DO NOT DO-at my cancer centre). I have talked to other woman stage 3 who did not have this done at initially staging. Anyway, she complete her chemo+rads in Jan/09 and by May/09 she had severe vision symptoms and bone pain. She was seen immediately and scans showed that she had 9 brain tumors and most of her bone was affected. She had to have a partial hip replacement and was told she had 6 months to live. She has just past her 6 month date. She is on some kind of chemo every 3 weeks and had some rads to her brain. They did not put her on Zometa (she had not even heard of this drug), she was not eligible for gama knife for the brain mets because she had more that 4 tumors and were bigger than the criteria allowed. She said that they did not do any follow-up scans after her initial treatment until she had the pain symptoms in May/09 (at that time things seem to be too late for her).I can'thelp but to wonder since they didnot do a Brain MRI (upon initial Staging) how does one know if the brain mets were not already there? Also, if they had done scans after her treatments were over could they have picked up on the bone mets and developed a new treatment plan??? I realize that one will never know since the scanswere not done. Maybe the mets would not have been there at the time...but who knows????

I discussed my pain in the rib section and told him that I have had it since December 15th which is now been over 2 months. He thoughts and comments to me were:

1) Every little bit of pain, ache, ect. I 'am likely to associate it with b/c -NO DUH!!!  But at the same time I wouldn't cry wolf, I would gave it a time frame. I have read on this site about a 2 week window period... He thoughts are that my rib section (dull constant ache) is not likely associated with bc and that it is not uncommon for a rib spot to show up on a scan for many other reasons. He goes on to say that my pain is likely associated with chemo related muscular symptoms/SE's. I explained to him that SE's due to my treatments have come and gone and I have learned to recognize what appears to be "normal" SE', and I reminded him that I have have this constant dull ache pain since Dec 15th. This is not normal for me and the pain has not come and gone.

2) He cautioned me about the concern from exposure to unnecessary radiation is harmful.

3) He explained that Scans have false positives and therefore can put patients in unnecessary anxiety/state and that sometimes you end up chasing things with repeated scans/MRI's to end up showing nothing wrong. 

He said that he would definitely not to a repeated scan until at least some time after my chemo (which is March 9) I think that's fair. But I will be asking him for one should the pain still remain after 4 weeks. Could he deny another bone scan??? Especially if I still have symptoms???

I am interested in others experiences??? What is normal follow-up protocols??? How does one know that they are NED Free after initial treatments??? Don't ONC's do assessments??? How does one know that chemo/rads worked???

Frankie

Edited for spelling