Community Member
6 months agoDid you know not all prostate cancers require treatment? Active surveillance is a valid approach for some. Has your team discussed this?
Accepted Answer
Active surveillance can indeed be a thoughtful approach for certain prostate cancer cases, and it's encouraging to see discussions about this option in the community. This monitoring strategy allows patients and their medical teams to carefully watch the cancer while avoiding unnecessary treatments when appropriate, though the decision depends on many individual factors that only a healthcare team can properly evaluate.
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Community Member
6 months agoYes I am aware but did not qualify.
Community Member
6 months agoAfter year of ADT (Firmagon and Nubeqa) my PSA was >.01 and testosterone level was at 20 so my oncologist suggested a medication vacation. I’ve been off my medication since January 2025 with bi-monthly PSA/Testosterone blood work. My last lab result May 15th was PSA .08 and testosterone level 143. I see my oncologist June 5th to re-evaluate whether or not I should go back on my ADT treatment. Anyone have any experience or ideas regarding this? Johnpaul 🙏
Community Member
6 months agoAfter year of ADT (Firmagon and Nubeqa) my PSA was >.01 and testosterone level was at 20 so my oncologist suggested a medication vacation. I’ve been off my medication since January 2025 with bi-monthly PSA/Testosterone blood work. My last lab result May 15th was PSA .08 and testosterone level 143. I see my oncologist June 5th to re-evaluate whether or not I should go back on my ADT treatment. Anyone have any experience or ideas regarding this? Johnpaul 🙏
Community Member
6 months agoActive Surv was discussed and seemed like a good option until the decipher genetic classifier results came back as aggressive. Then shifted to a discussion of treatment options.
Community Member
6 months agoI believe active monitoring or surveillance is in fact a viable treatment approach probably the most conservative BUT if PSA or Gleason Scores are above certain metrics most doctors will move to recommendation for either prostate removal or radiation therapy. No?
Community Member
6 months agoMy Dr calls it "watchful waiting" sounds so serene. My ins won't pay for scans because I am low risk. Meanwhile it seems no one cares as my PSA #s doubled in the last 3 months. I feel like I have a live grenade in me. I was offered a prostatectomy but I don't want to take such a drastic step unless I know that will get rid of ALL the cancer. Without the scan it is a craps shoot.
Community Member
6 months agoRobert, in my opinion and experience I suggest calling your insurance and push their hand. Also tell your doctor to assist with the process and wording. If not, seek a second opinion/option via another health provider. This is your life my friend and more valuable to you and no one else. Especially your PSA numbers are doubled, get active my friend. I hear you on the life grenade analogy, I'm with you on that. You should get a prostate specific MRI and if they find something (hopefully not) then a biopsy.
Community Member
6 months agoHopefully you will not need further steps, but if you do - then explore the available options, surgery, radiation, etc. It is a very scary and frustrating process but doable with support from family, friends, Outcomes4Me, research, and the heavens. Wishing you the best.
Community Member
6 months agoThat is the scan they denied and I have had the biopsy. (Ouch!) That is my Drs whole treatment plan blood work every 90 days and annual biopsy. Thanks for the reply I have been feeling very alone in this.
Community Member
6 months agoMy urologist took that approach over three years ago. Now stage 2 and growing.
Community Member
6 months agoRobert, ask your doctor for an MPS2 or Episwitch PSE test. Let me know the response.
Community Member
6 months agoThat’s what my former urologist did. Despite rising PSA and two growths revealed in an MRI. I showed a two year old copy for a second opinion and was told to have immediate biopsy. Another MRI revealed more growths. Biopsy revealed stage two. That means it had been growing for at least two years. Double edged sword!
Community Member
2 months agoActive surveillance can indeed be a thoughtful approach for certain prostate cancer cases, and it's encouraging to see discussions about this option in the community. This monitoring strategy allows patients and their medical teams to carefully watch the cancer while avoiding unnecessary treatments when appropriate, though the decision depends on many individual factors that only a healthcare team can properly evaluate.
Community Member
19 days agoHad a needle biopsy done almost two years ago with no indication of cancer. Then because of poor urine flow had video taken of my bladder (small tube with camera) and found a large diverticulum on my bladder. Had a TURP and the diverticulum removed with robotic surgery. Found Gleason 3 + 4 from TURP done on prostate. I am under Active surveillance now. PSA 3 months after surgery was .56. Last month it was .6. Once a year I have an MRI; every 3 months I have PSA checked. Any one here with similar experiences with Gleason 3 + 4 and Active Surveillance?
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