Request denied for CT Scans after + nodes

I've just been diagnosed with Invasive Ductal Carcinoma. My My Path reports: 3 out of 16 nodes +. Angiolymphatic invasion and with extension to within 1 mm of margin. size: 2.0cm, micropapillary features. Tubular score 3. Nuclear score 3, Mitotic index 3. Extranodal extension present. ER neg. PR + 95% moderate. Ki67: high 80%. Her2 neu Negative. AJCC/UICC stage: pT2. pN1a. pMX.  I've requested CT scan of my chest; abdomen and pelvis to rule out any other lesions. I've requested MRI or CT scan of my suprclavicular; infraclavicular nodes; internal mammary basins in case these areas should be incuded in radiation therapy. All my requests were denied by the Chemotherapy ONC and my surgeon. I've read where after these scans are done many treatment plans are altered or increased due to the metastases found. What can I do to get these tests done? The chemo Onc said those tests don't make a difference in treatment and that I'm a stage 2 and don't need them. However, I don't see how an accurate staging can be done without these tests?? Please advise. Thanks!

[katarina777]

I didn't have any of those scans done either before I started chemotherapy. Except, I did have an MRI a few days prior to surgery as my surgeon wanted to be sure that no cancerous lymph nodes were were present, as none could be detected by Ultrasound, and none showed up on a previous CY scan, and none could be palpated, or felt by physical examination.

When the MRI showed nothing abnormal, my surgeon was still not satisfied and told me MRI's were notoriously wrong in showing true lymph node status. inspite of the negative test, he still reserved the OP for an extra two hours just in case. it turned out that the MRI was wrong and 15 cancerous lymph nodes were present. so, maybe that is one reason. the other reasons for them not doing these tests you ask for my oncologist explained to me, and your doctors should have also given you a reason rather than just saying 'NO'. (I assume that the reasons between my oncologist's thinking and yours are similar)

It's this. Lets say something shows up, some somts to the kungs, or so? Well, since you are already going to be treated with very heavy duty chemotherapy, it does not really matter if mets are present or not?

But that is not the only reason. The other reason is that if no mets show up on the MRI or CT scan, that does not mean that mets are not present, as microscopic mets, (the smaller ones) are more often than not detected on scans even if they may be there and very aggressive.

Does that make sense? Katrin

Even after treatment, usually routine testing is not done, but only if you have symptoms.

[katarina777]

correction: microscopic mets, or even other mets, are often NOT detected on those scans, so if they say nothing shows that doesn't mean nothing is there, and therefore not very helpful, or telling?

In my case, I had chemotherapy before surgery.

[katarina777]

What you do may want to ask for is that they check your tumor marker, and then again after or during treatment, and for years down the line in case you have new symptoms.
by itself, these tests are not adequate, but they are very telling in combination with other tests and should your cancer spread at some point. Your doctors probably figure that as a stage 2 extra scans are neither helpful, necessary not reliable at this time.

[SueYoung55]

Your doctor should allow you any testing you feel you need within reason and frankly, that is within reason. I've had all of those but will tell you that the radiation from the CT is not good for you. The MRI is what I would choose but I've had all of them including PET scans. If you don't feel your doctor is listening to you CHANGE DOCTORS. You are your own best advocate.

Best wishes.