dodgedh2

I was diagnosed as Stage 4 (unknown primary) in 2008. After surgery and gamma radiation treatment during surgery, I’ve been NED.

Congratulation! Welcome to the club.

I was diagnosed at Stage 4 with a met to the bone (sacrum). I had absolutly NO symtoms, other than exhaustion and night sweats.

Sorry to hear that. I have ben NED for 9 years now, following sugery and Gamma radiation of the site during surgery. Can you please share how you came to be diagnosed again? Were you having other symtoms? Was there visible evidence (such as another mole)? I was diagnosed at Stage 4 (to the bone) and have always feeled recurrance. Especially since the scans ended and no other definitive checks.

I haven't been on this forum in a while, but saw your post and thought I'd chime in. I was originally diagnosed at Stage 4 with unknown primary. Following surgery and Gamma radiation (during surgery), I survived. I am now approaching 9 years NED! I'm still anxious, however, learning that there is still life ahead.

I haven't been on this forum in a while, but saw your post and thought I'd chime in. I was originally diagnosed at Stage 4 with unknown primary. Following surgery and Gamma radiation (during surgery), I survived. I am now approaching 9 years NED! I'm still anxious, however, learning that there is still life ahead.

I haven't been on this forum in a while, but saw your post and thought I'd chime in. I was originally diagnosed at Stage 4 with unknown primary. Following surgery and Gamma radiation (during surgery), I survived. I am now approaching 9 years NED! I'm still anxious, however, learning that there is still life ahead.

I am a patient at U of M also. I was first diagnosed at Stage 4 w/unknown primary. As stated, i had CT scans every 3 months for the first couple years, then down to evry  months. At the 5 year mark, I was released from oncology to my PC. This was largely due to me achieving NED status. It was explained that recurrance usually takes place within the first 3 years. After 5 years NED, IF it returns, it is usually not as agressive. At that point, the risk due to radiation from scans is larger than the Mel returning. I just celebrated my 8th year of Stage 4 NED.

I was diagnosed at  Stage 4 w/unknown primary. I have been NED for over 13 years.

I had one MRI (of the brain) when I was first diagnosed. Since the MRI was clear, they told me that no more MRI's would be necessary. They told me indicators of a brain Mel would be headaches that don't go away, flashes of light, etc. If I encountered any of those symptoms, then they would conduct another MRI. I was seeing Dr. Redman at U of M and I was very comfortable with his care. Of course the anxiety was still there, and still is (to a lesser extent now). Whatever your decision, make sure you're always under the casre of a Mel Specialist. U of M is good because they are very much into research on Mel also.

I had one MRI (of the brain) when I was first diagnosed. Since the MRI was clear, they told me that no more MRI's would be necessary. They told me indicators of a brain Mel would be headaches that don't go away, flashes of light, etc. If I encountered any of those symptoms, then they would conduct another MRI. I was seeing Dr. Redman at U of M and I was very comfortable with his care. Of course the anxiety was still there, and still is (to a lesser extent now). Whatever your decision, make sure you're always under the casre of a Mel Specialist. U of M is good because they are very much into research on Mel also.

I had one MRI (of the brain) when I was first diagnosed. Since the MRI was clear, they told me that no more MRI's would be necessary. They told me indicators of a brain Mel would be headaches that don't go away, flashes of light, etc. If I encountered any of those symptoms, then they would conduct another MRI. I was seeing Dr. Redman at U of M and I was very comfortable with his care. Of course the anxiety was still there, and still is (to a lesser extent now). Whatever your decision, make sure you're always under the casre of a Mel Specialist. U of M is good because they are very much into research on Mel also.

I also was treated by Dr. Redman. He released me from Oncology after 5+ years of being NED. He told me that the risk from radiation from the scans was higher  than the Mel returning after 5 years NED. From what he said, recurrance at that point typically indicated a less agressive Mel. He also let me know that if there was any indication of a recurrane that I was priority in coming back. I have a great PC thatmonitos my condition and reacts to any concerns that arise. I had a few scares that resulted in CT scans, but yielded no Mel, only kidney stones. I am now enjoying 8+ years of NED at Stage 4 .

I also was treated by Dr. Redman. He released me from Oncology after 5+ years of being NED. He told me that the risk from radiation from the scans was higher  than the Mel returning after 5 years NED. From what he said, recurrance at that point typically indicated a less agressive Mel. He also let me know that if there was any indication of a recurrane that I was priority in coming back. I have a great PC thatmonitos my condition and reacts to any concerns that arise. I had a few scares that resulted in CT scans, but yielded no Mel, only kidney stones. I am now enjoying 8+ years of NED at Stage 4 .

I also was treated by Dr. Redman. He released me from Oncology after 5+ years of being NED. He told me that the risk from radiation from the scans was higher  than the Mel returning after 5 years NED. From what he said, recurrance at that point typically indicated a less agressive Mel. He also let me know that if there was any indication of a recurrane that I was priority in coming back. I have a great PC thatmonitos my condition and reacts to any concerns that arise. I had a few scares that resulted in CT scans, but yielded no Mel, only kidney stones. I am now enjoying 8+ years of NED at Stage 4 .