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AlaskaAngel · 07-18-2009, 10:56 AM

Donna, your question brought out exceptionally good info and I hope this thread gets lots of reading over time.

I just want to add a comment about one question you had -- your concern about the amount of radiation you are getting through imaging. The concern is real and I'm glad you recognized that.

Because cancer patients often see a variety of doctors over time, and because no organized effort is consistently made by medical providers to track the cumulative amount of radiation we receive, the risk involved goes unmentioned.

At 5 years out as a NED stage I, I made a list of every bit of radiation I have ever received and took it to my annual physical exam to discuss it with my PCP. (His daughter is a radiologist.) The reason I did this at the time was because I was being considered as a participant in the TEACH trial for lapatinib for the HER2's who missed out on trastuzumab, and in order to qualify for that, I had to have a CT to demonstrate that I really was actually NED to begin with. I had the CT, and the tech walked back in and said she was going to have to do it over for some reason. I was very reluctant, but because of the trial I went ahead and let her. For almost a week afterward, I had radiation sickness. That term is not what medical providers euphemistically call what I had, but that is what it was. I could get up okay in the morning but by noon I could barely stand up, and by night I was flat in bed, ALL week. That told me a lot about radiation exposure. And the trial required having CT scans every 3 months, for a year. In addition, over the years I likely might need other scans from time to time.

Think about it. The medical providers certainly don't.

I withdrew from the trial.

Sad to say, the amount of rads I have received over time is very questionable medically. And remember also that it was recommended for someone who was only a Stage I, with no evidence of disease.

You are the only person involved with your medical care who is likely to keep a tally on the amount of radiation you receive over time.

This is very poor practice on the part of medical providers and continues to go unnoticed. As patients, especially in the age of computerization, the amount of rads we receive should be tracked on every medical record we have from the very first dose we get.

AlaskaAngel

07-18-2009, 10:56 AM	#9
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	One further thought... Donna, your question brought out exceptionally good info and I hope this thread gets lots of reading over time. I just want to add a comment about one question you had -- your concern about the amount of radiation you are getting through imaging. The concern is real and I'm glad you recognized that. Because cancer patients often see a variety of doctors over time, and because no organized effort is consistently made by medical providers to track the cumulative amount of radiation we receive, the risk involved goes unmentioned. At 5 years out as a NED stage I, I made a list of every bit of radiation I have ever received and took it to my annual physical exam to discuss it with my PCP. (His daughter is a radiologist.) The reason I did this at the time was because I was being considered as a participant in the TEACH trial for lapatinib for the HER2's who missed out on trastuzumab, and in order to qualify for that, I had to have a CT to demonstrate that I really was actually NED to begin with. I had the CT, and the tech walked back in and said she was going to have to do it over for some reason. I was very reluctant, but because of the trial I went ahead and let her. For almost a week afterward, I had radiation sickness. That term is not what medical providers euphemistically call what I had, but that is what it was. I could get up okay in the morning but by noon I could barely stand up, and by night I was flat in bed, ALL week. That told me a lot about radiation exposure. And the trial required having CT scans every 3 months, for a year. In addition, over the years I likely might need other scans from time to time. Think about it. The medical providers certainly don't. I withdrew from the trial. Sad to say, the amount of rads I have received over time is very questionable medically. And remember also that it was recommended for someone who was only a Stage I, with no evidence of disease. You are the only person involved with your medical care who is likely to keep a tally on the amount of radiation you receive over time. This is very poor practice on the part of medical providers and continues to go unnoticed. As patients, especially in the age of computerization, the amount of rads we receive should be tracked on every medical record we have from the very first dose we get. AlaskaAngel