Active surveillance

[tcxr750]

I’d be interested in what the experience has been for others who have been diagnosed with prostate cancer and are under active surveillance.
My experience has been PSA every six months and prostate biopsy every two years. Initially I had 5% of one core with a Gleason of 3+3. Thirty six core samples later the next step is Multi Parametric MRI. My thinking was that an MRI reduced the number of core samples by better targeting. My current Urologist says he does twenty guided by the MRI.
Does the Urologist keep doing biopsies over time until the prostate looks like Swiss cheese or he finds cancer and decide on a treatment plan?

[Biker Dog]

The head doctor at Moffitt told me to never have more than one biopsy if cancer snowed in the first one.

[l2ridehd]

Was with active surveillance for 5 years and than was told I needed to take action. My doctor wanted to do robotic surgery. I did a ton of research, read about 20 books and 100's of medical white papers that a family member got access for me, and than did the John's Hopkins one day evaluation and recommendation process. They have a team approach with a surgeon, a radiation oncologist, a medical oncologist, and a prostate cancer specialist spend a day reviewing all the information, doing tests and than they meet as a team with you to discuss options. They take 6 folks every other Friday to do this. I had a PSA of 8.4 and a gleason 8 in one core with a 7 in a second core.

After all this information I decided against surgery and went with Proton radiation at UF Proton Therapy Institute in Jacksonville. That is the closest available cyclotron which is required for proton radiation. Photon radiation is available locally here in The Villages. There is a huge difference between Proton and Photon radiation and you really need to understand that difference before making a decision. The collateral damage done by Proton radiation is significantly less than with Photon radiation.

Today I am cancer free, PSA <0.1 which means they can't measure it, and zero side effects. There are usually really bad side effects with other treatments which include things like ED, incontinence, and bowel and bladder issues. If you need treatment, I would be happy to discuss my treatments and why I chose to go the route I did with you. Or anyone else who is facing this decision. Just send me a PM with your contact information.

[lanabanana73]

Was with active surveillance for 5 years and than was told I needed to take action. My doctor wanted to do robotic surgery. I did a ton of research, read about 20 books and 100's of medical white papers that a family member got access for me, and than did the John's Hopkins one day evaluation and recommendation process. They have a team approach with a surgeon, a radiation oncologist, a medical oncologist, and a prostate cancer specialist spend a day reviewing all the information, doing tests and than they meet as a team with you to discuss options. They take 6 folks every other Friday to do this. I had a PSA of 8.4 and a gleason 8 in one core with a 7 in a second core.

After all this information I decided against surgery and went with Proton radiation at UF Proton Therapy Institute in Jacksonville. That is the closest available cyclotron which is required for proton radiation. Photon radiation is available locally here in The Villages. There is a huge difference between Proton and Photon radiation and you really need to understand that difference before making a decision. The collateral damage done by Proton radiation is significantly less than with Photon radiation.

Today I am cancer free, PSA <0.1 which means they can't measure it, and zero side effects. There are usually really bad side effects with other treatments which include things like ED, incontinence, and bowel and bladder issues. If you need treatment, I would be happy to discuss my treatments and why I chose to go the route I did with you. Or anyone else who is facing this decision. Just send me a PM with your contact information.

PM'd you!

[retiredguy123]

Was with active surveillance for 5 years and than was told I needed to take action. My doctor wanted to do robotic surgery. I did a ton of research, read about 20 books and 100's of medical white papers that a family member got access for me, and than did the John's Hopkins one day evaluation and recommendation process. They have a team approach with a surgeon, a radiation oncologist, a medical oncologist, and a prostate cancer specialist spend a day reviewing all the information, doing tests and than they meet as a team with you to discuss options. They take 6 folks every other Friday to do this. I had a PSA of 8.4 and a gleason 8 in one core with a 7 in a second core.

After all this information I decided against surgery and went with Proton radiation at UF Proton Therapy Institute in Jacksonville. That is the closest available cyclotron which is required for proton radiation. Photon radiation is available locally here in The Villages. There is a huge difference between Proton and Photon radiation and you really need to understand that difference before making a decision. The collateral damage done by Proton radiation is significantly less than with Photon radiation.

Today I am cancer free, PSA <0.1 which means they can't measure it, and zero side effects. There are usually really bad side effects with other treatments which include things like ED, incontinence, and bowel and bladder issues. If you need treatment, I would be happy to discuss my treatments and why I chose to go the route I did with you. Or anyone else who is facing this decision. Just send me a PM with your contact information.
I think they now have the proton treatment in Orlando.

[bob47]

The head doctor at Moffitt told me to never have more than one biopsy if cancer snowed in the first one.

Can you clarify this a little more? Thanks.

[l2ridehd]

I think they now have the proton treatment in Orlando.

They do. But because they treat a broad range of cancers, when I checked with them they had only handled under 40 prostate cancer patients. At Jacksonville they have treated over 5000. Perhaps sometime down the road they may work out well for folks, but at the time I needed treatment I felt Jacksonville was a much better option.