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Active Surveillance

peterman profile image
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So I've seen 7-8 doctors and the news is about as good as it can be for a guy with prostate cancer. Recommendation is active surveillance given my stats. Anyone else doing AS? What protocol is your doctor having you follow? Mine says quarterly blood/PSA test and annual biopsy. The biopsy is , well, literally, a pain in the ass. Any doctors using MRI on some periodic basis?

And what about the mental side? I still have cancer in me and that is unnerving. Any suggestions on how to deal with the emotional side of this?

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peterman
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Roger2Dodger profile image
Roger2Dodger

Peterman, What are your stats? Gleason score, PSA..etc. I had the same dilemma as you. I finally elected to have EBRT. But, ever case is different. The only suggestion I have to deal with the emotional side is you have time to make any decisions, whether its AS or treatment. So, cool it worrying want help, if any thing just worsens the situation. Just do as the DR suggested and monitor the PSa . and get on with your life. If you cannot do that, then I suggest you get treatment. but the ball is in your court. G'Luck!

peterman profile image
peterman in reply to Roger2Dodger

Gleason 6, 3 cores out of 12, PSA=10, 56 years old. Thanks for the words of encouragement. Why did you decide to go EBRT(as opposed to other treatments)

Roger2Dodger profile image
Roger2Dodger in reply to peterman

I was 76 years old when I was diagnosed with PCa. Because of my age, In was advised to not have surgery. EBRT was the way I chose. And I would have chose EBRT even at a younger age. My decisions was based on research of treatments available to me.

Vbarry927 profile image
Vbarry927

I was diagnosed in Oct. 2016 at 60. 3 cores at Gleason 6. PSA was 4.6. I decided on AS. Additionally I was placed on Xtandi as part of a study to see its benefit in early stage non metastatic disease if any. Took the drug for a year. Side effects not too bad, fatigue and breast enlargement and tenderness. Had a followup mri guided biopsy in January 2018. 2 cores with Gleason 6 and 1 core Gleason 7. Research urologist recommended to talk to surgeon and radiologist again to review options. I have decided to go for robotic surgery on May 9. You mention the emotional side and frankly I’m sick of thinking about the disease and now concerned that if I stay on AS, that it might not be orphan confined at the next biopsy. I have been told with either radiation or surgery I have a 95% chance of no recurrence. Wish me luck.

peterman profile image
peterman in reply to Vbarry927

Good luck VBarry927!

cpcohen profile image
cpcohen

FWIW --

Yes, some docs (and AS programs) are using annual MRI's, instead of annual biopsies. There are studies that show that MRI's are pretty good at detecting tumor volume and spread.

Or, you could just monitor PSA.

A question:

. . . Why 7 or 8 doctors ?

Was there disagreement among the first two or three ?

. Charles

peterman profile image
peterman in reply to cpcohen

Once I was told I had cancer, I wanted to get informed...pretty quickly.

Started with my PCP, then Urologist. He referred me to a number of docs that do all kinds of treatments. (surgery, robotic surgery, radiation, brachytherapy, etc.) It was interesting hearing their different opinions on options. What was most interesting is that they were consistently not alarmed and gave me some confidence that AS was a viable alternative.

Peterman my consulting surgeon thought AS would be good for me 3 cores one 6 - 5% and two 3+4. -15% My regular urologist had ordered a prolaris test which still has not come back. The consulting surgeon also ordered a PTEN test. Both will give information about how aggressive the cancer is. Each individual profile and life style makes a difference. I am 68 a runner with a prior TURP and related scarring. My wife and I have regular sex (not that often) ha but it is still good. You are younger and you might want to continue AS for family reasons and not having to deal with the side effects. It doesn't both me waiting and watching. I will have an T3MRI and Bone Scan next week, PSA every three months and annual biopsy. If needed to I would go on hormone treatment increase my workouts with weight training and take related side effect meds if needed to prevent breast enlargement ect. I am also looking into Proton treatment at MD Anderson too. I was surprised reading Invasion of the Prostate Snatchers that he used hormone treatment while on AS. I would think that it would no longer be AS if you are being treated. Anyway diet helps to broccoli and cauliflower have increased at my house. Research is good but so are hobbies, work and pleasure reading. I think the thing with AS is that isn't necessarily going to last and evidently you will need treatment. For me it is a nice retrieve and I needed that since being diagnosed this past Feb. Here is a bit more on the topic by the head of Urology at UCSF

Dr. Peter Carroll:

First, let me state who are the best candidates for active surveillance. The best candidates for active surveillance are those men with low-grade prostate cancer, what we call no-pattern four or five score to their biopsy. They have cancers which either can't be felt or seen or those that can be felt or seen but confined totally to the prostate, what we call T1 or T2a disease, less than 1/3 of the biopsy is positive, and most of these men have had 12 or more biopsies done, so less than 1/3 of the biopsy is positive and less than 50 percent of any single core involved. That tends to define a group of people with very limited disease who are good candidates for active surveillance.

I emphasize the diagnosis has to be made as a product of a very good biopsy. So sometimes if we're not quite sure that the biopsy technique was adequate we'll go ahead and repeat the biopsy just to be sure we're not what I call "under-grading" or under-staging that patient. Now, active surveillance is being done at many centers, not as many that it perhaps should be, but centers here in the United States and in Canada and in Europe. No one knows the best way to follow patients, but here at UCSF we get PSA tests and blood tests done every three to four months, serial imaging with a Doppler ultrasound actually is a pretty good test so we do that at six-month intervals, and we usually repeat the first biopsy at 12-24 months. Then depending upon how long the patient has been on surveillance, we extend the time interval between evaluations, so it's really a product of blood testing, physical examination, imaging, and every now and then a repeat biopsy.

Good Luck!

peterman profile image
peterman

Thanks awinnegar1. Very informative and supportive piece. Appreciate it.

cpcohen profile image
cpcohen

>>> . . I was surprised reading Invasion of the Prostate Snatchers that he used hormone treatment while on AS. I would think that it would no longer be AS if you are being treated. . .

<<<

+1. "Invasion of the Prostate Snatchers" is (IMHO) a very misleading book. Its message is:

. . . "Wait till the PCa becomes systemic, and then we can treat it with ADT."

As I remember it, the authors have negative opinions of _all_ "local treatments" -- surgery, brachy, external-beam. I don't know what it says about protons.

A family member -- who had Gleason 8 PCa -- read it, and started asking:

. . . "Do I need _any_ treatment for this, now?"

It took three docs, at the NIH in Washington, to convince him that the answer was "Yes, you do."

. Charles

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