Follow up scans/what NCI says!

[Sandy]

My oncologist and I were talking about follow up scans and he said that the NCI now says scans once year is sufficient because they are not really very accurate. Too many recurrences after the scans give a clear picture. I told him that I wanted them every 6 months and he agreed with me. We need some piece of mind even if its only for a few weeks or months. I wonder now if the insurances will starting saying its not necessary and stop paying. My doctor says that all the big research hospitals belong to NCI and that is where the others get their data from. Has anyone heard this? For me I don't think it will be a problem getting them every 6 months but for some it may be. Sure is scary. Hugs, Sandy

[Lauren]

Actually, the doctors at Columbia/Presbyterian do not routinely scan their breast cancer survivors. We get blood work and physical exams, and that's about it. Our blood work does not include tumor markers either. I asked why, and both doctors I asked told me that they subscribe to the school of thought that whether you catch a recurrence when it is only detectable on a scan versus when there are actual symptoms is not relevant to how the medical profession chooses to treat it or what the odds of survival are. They seem to feel that once it's "out of the box", if a particular chemo is going to work, it's going to work whether the cancer is in just one place or in several.

I don't know what to make of that, but I am happy to not be scanned regularly. So far, I am feeling good, and I have to believe that means something. When I was diagnosed at stage IIb, I was already feeling and looking really crappy.

Lauren

[Leslie]

I just finished adjuvant treatment for stage III and my oncologist does not do follow-up scans because there was a study done my that found that the treatment and outcome does not make a difference if the reoccurence/metastatis was found from a scan or symptoms.

I found the details of this study on the asco site and my problem is that this study is over 8 years old. There has been a lot of changes in the past 8 years in the treatment of metastatic disease. Many of the those new treatments depend on early detection. So, in 6 months, I am going to be pressuring my doctors for follow-up scans.

[Patty D]

My onc pretty much does any scan any time I ask for ut routinely I have CT of of the chest ,pelvis and abdomen about every 3 months and an echo every 6 months- I have now added the brain MRI to my list and have had a follow up CT for that last Dec and recently another brain MRI.I will be talking to the radiation specialist at St Josephs Hosp tomorrow about having the Cyberknife procedure- they just became one of a handful of centers that have this machine. I am nervous and hope I will be a candidate for it. It is supposed to be the best hight tech procedure for brain tumors- So yes I advocate regular scans- I think MRIs are preferable to CTs (more dtetailed).

[Sandy]

I agree with you its every 6 months for me. If I had a different cancer and was in remission for a year of two then I would be o.k. with the other. With metatastic disease I think, for me, its not realistic to wait a year. I have not been NED longer then 5 months in the 3 years I have been battling this disease. I feel I wouldn't be here if I waited a year for scans. I have had recurrences and felt great. Ours bodies are all different and very expensive to maintain. Like I have told my husband I have invested so much in my body and its still not worth anything! We do need a little humor now and then. Hugs, Sandy

[Lisa]

I don't get it. SO many of us have had recurrences with NO symptoms and waited until it was very late to have scans. Mary's brain tumors (too many to count)had no symptoms. If she were scanned earlier, she might have looked at CyberKnife, etc., rather than WBR. ....My backache for several months never worried any doctor enough for a scan. Only with a totally unrelated symptom were my liver mets discovered (already 25% of liver by that time). I'm sorry, but rads or not, I'm an advocate for regular scans.

Love and light to all,

Lisa

[Lauren]

But you DID have symptoms...you had a backache...for several MONTHS. My doctor has a "two week rule". If it lasts for more than two weeks, whatever it is, you get it checked out. I don't know anyone who was diagnosed with brain lesions who didn't have some symptom....be it dizziness, confusion, etc. Are you sure she had NO symptoms? Just maybe subtle symptoms that were not considered worrisome by a doctor?

See, that's the thing. We KNOW our bodies. If something worries us...for more than two weeks...I say get it checked.