advice on brain scans please?

[Jane]

Hi,

I'd like to know how often I should request a brain scan. There seems to be some question on this and I'm wondering what everyone has experienced -

I'm 47, divorced, with a 10-year-old and an 8-year-old. I was diagnosed in Feb. 05 with Stage 3 cancer, 6.5 cm tumor in right breast, 6/15 positive nodes, ER+, PR+, HER2+. Had a bilateral mastectomy in April '05, followed by 8 rounds of ACT and Taxotere plus 6 weeks of daily radiation. Am 8 months into weekly Herceptin, which I will finish in August.

My oncologist would not scan me at ALL, she said, but I have requested at least annual CT/MRI body scans. The oncologist is fine with this but I'm wondering if I should request more - and if so, what specifically?

thanks so much,
jane robinet

[Lisa]

When I first got my BC mets, I wondered the same thing. Why hadn't they scanned me after my mastectomy and chemo? I came to find out there is a very good reason. With aggressive cancers like you (and I have) scans can show up negative one week and postive only a few weeks later. Of course, we can't constantly be doing scans. My onc did blood tests every few months after my original BC, and actually relied on those and my symptoms. For example, for months I had an ache in my back under my shoulder blade. Then I became short of breath. When a CT scan was ordered to look for possible causes, my liver mets (the back pain) were discovered. Further tests then showed I had bone scans all over the place.

It's not a perfect system. but I guess for now it's what we have. Don't panic about little aches and pains, but do pay attention if you develop a persistent problem. And don't be shy about calling your onc. Like mine told me, "I'd rather talk to you during the week, then have to see you on a Saturday night in ER."

Love and light,

Lisa

[tousled1]

When I was initially diagnosed (Stage III, axillary node involvement, ER/PR neg, HER2 pos) before I even saw my oncologist my surgeon had ordered a body CT, and a bone scan. Both were negative. She also ordered an MRI of the other breast -- showed an 8mm tumor which she biopsed and it was negative. I am more than half way done with neoadjunct chemo and oncologist just ordered an MRI of the brain done which was ok. Now I have an EEG scheduled. These two tests were ordered due to some fainting episodes I was having.

[Sherryg683]

My Oncologist has done CT scans on me every 6 weeks to see if the treatment is working. I have had 2 brain scans done (one was because I asked for it because of headaches). After the mets are cleared up, he plans to scan me every 3 months for the first year (brain scan also). Then I believe every 6 months afterward. I feel very comfortable with this. I still believe catching mets early before they get out of hand is critical. A lot of times you will have no syptoms with the mets and I don't want to wait for that. I had absolutely no symptoms with my liver and lung mets. Many Oncologist don't do the blood tests, mine is one of them. I asked him about them and he said they are too unreliable, that he can determine more with the scans. It varies with Doctors. I would not be comfortable at all with an Oncologist that didn't plan on checking me at least twice a year. I feel lucky to have the Doctor I have, he's very open to what I have to say and willing to do whatever it takes to put me at ease....sherryg683