Concerned...
02-08-2006, 05:40 AM
I have a question. Is there any recommended studies or protocol about how often one who has Her2+ b.c. should have an MRI? I was fortunate to have had Herceptin for a year during my initial treatment for b.c. I have had brain MRI's since but my oncologist and neurologist have begun acting 'weird' about it. Most recently, I asked my oncologist about getting a new brain MRI since my last one was a year ago. I have begun getting headaches in the back/top of my head. I get them daily. They do not last for that long but are increasing in frequency. I also get bouts of vertical double vision. I also have a feeling of pressure on my head and sometimes feel like I am in a long tunnel. I was told by my neurologist who had previously ordered the MRI's that the oncologist would now do it. I am being treated at an HMO. They recently began including a coded diagnosis page in the chart(s) with a medicare billing code. (I am not on medicare; my employer offers this insurance). My page had a list of many coded diagnoses for me. The second one listed was 'secodary malignant neoplasm of the brain and spinal cord.' (No where on this coded page does it list hat they treated me for breast cancer or that I had a diagnosis from them of such. The form lists "anemia unspecified for diagnosis that was given at time of my bilateral mastectomy." Most recently it states that there is a "personal history of malignant neoplasm of the breast" but date on that was 4.5 years after my mastectomy. There are also some weird things listed and an important omission. It does not list that I have lymphedema and am being treated for such. It also listed that I had syncope and collapse (fainting) but I have NEVER fainted. In addition it lists that I have an aortic valve disoders. I do have a congenital heart murmer but have a very healthy heart. My fear is that they are gearing up for an eventual metastatic diagnosis but are finding things to deny me additional use of Herceptin. In addition if they delay doing something about brain mets that could mean by the time they image or re-image them it will be too late for me to get focused radiation.
My oncologist had previously told me that he doesn't order MRI's unless the patient has symptoms. I am now experiencing what may be symptoms and was now told that he wasn't going to order an MRI at this time even though it had been more than a year since the last one and I now am experiencing symptoms (increased).
He did tell me that those who were Her2+ were living longer and that was why there was an increase in those who had brain mets. I also saw another abstract involving a small student that was done (whose results he was not aware of) that said that the increase in brain mets was related to the Her2+.
I believe that he is not ordering the MRI because it might show something that could benefit from focused radiation treatment. The radiation oncologist, whom I saw last year, let me know that they don't do radiation for b.c. patients on 'small' stuff.
The neurologist had told me a year before that the only treatment available to me would be surgery. I am guessing they are waiting until my only option would be either that or WBR.
I told my oncologist that I wanted to find out if there would be any available less invasive treatments and that we were willing to pay for it out-of-pocket if need be. In fact I told him that we have never asked our HMO to pay for anything, we are not out to sue anyone, and if we had wanted to we could have done that from the start. All I want is appropriate diagnosis so that I can get the optimal treatment. He then said I could go ahead and sue him. I again said we were not out to sue anyone just want to get an appropriate diagnosis. He told me he was aware of that but still would not order a test. So, I am trying to find any written information regarding protocol of frequency of MRI for those who have Her2+ b.c.
I am feeling really uneasy about all this and concerned that this new coded diagnosis form (which is both incorrect and missing information) may result in my being wrongly denied 'best' available treatments.
My oncologist had previously told me that he doesn't order MRI's unless the patient has symptoms. I am now experiencing what may be symptoms and was now told that he wasn't going to order an MRI at this time even though it had been more than a year since the last one and I now am experiencing symptoms (increased).
He did tell me that those who were Her2+ were living longer and that was why there was an increase in those who had brain mets. I also saw another abstract involving a small student that was done (whose results he was not aware of) that said that the increase in brain mets was related to the Her2+.
I believe that he is not ordering the MRI because it might show something that could benefit from focused radiation treatment. The radiation oncologist, whom I saw last year, let me know that they don't do radiation for b.c. patients on 'small' stuff.
The neurologist had told me a year before that the only treatment available to me would be surgery. I am guessing they are waiting until my only option would be either that or WBR.
I told my oncologist that I wanted to find out if there would be any available less invasive treatments and that we were willing to pay for it out-of-pocket if need be. In fact I told him that we have never asked our HMO to pay for anything, we are not out to sue anyone, and if we had wanted to we could have done that from the start. All I want is appropriate diagnosis so that I can get the optimal treatment. He then said I could go ahead and sue him. I again said we were not out to sue anyone just want to get an appropriate diagnosis. He told me he was aware of that but still would not order a test. So, I am trying to find any written information regarding protocol of frequency of MRI for those who have Her2+ b.c.
I am feeling really uneasy about all this and concerned that this new coded diagnosis form (which is both incorrect and missing information) may result in my being wrongly denied 'best' available treatments.