Anyone Choose Active Surveillance FOR PC with Gleason 7 (4-3)

[JWS13]

Has anyone chosen AS or WW for a Gleason 7 (4-3) and is still on it for years or ?

What has been your experiences and results? how many years?

what types of monitoring do you do? (i.e ..psa every 3 months, PSMA Pet (once a year ,) Biopsy- (once a year) , MRI , etc )

When did you start AA or WW and when did you start treating the PC and what was the "trigger" (if any) that caused you to begin treatment or still haven't treated?

What made you do AS or WW with this "unorthodox" Gleason score (i.e Fear of Side Effects ED, etc.)

Please advise the good, bad , and ugly? thanks ..all responses welcome

[Tall_Allen]

It would be called "watchful waiting" for unfavorable risk men. It is only offered to men with less than 10 years of life expectancy, because they are likely to die of something else first. They are only given hormone therapy palliatively when they start feeling pain and organ failure.

No one who has ever seen someone die of prostate cancer would choose that if he is young and healthy.

[Mike1601 in reply to Tall_Allen]

Hi there. I had that score 5 years ago, live in Europe but went to the USA for treatment, they advised very, very strongly against watchful waiting as I was 52 at the time and they told me they could cure this as it was contained and 5 years later I am still cancer free. Mind you the cure came with ED, which took two years of very hard (no pun intended) work to get any function back, was no fun at all but I did get it back although not the same as before. Thats just my experience.

[930911 in reply to Mike1601]

Mike, what procedure did you go with surgery or radiation?

[JWS13 in reply to Mike1601]

what kind of "work" did you have to put in to get it back to normal?

[Mike1601 in reply to JWS13]

I could write a book on this! I never knew it was use it or lose it so after a few weeks I started trying to get it going, didnt work, used all the usual drugs, didnt work. Doc told me to get a pump (which I got in a sex shop), it got me hard but only for very short times, got the injections directly into the penis (not as painful as you think, youre probably wincing reading that, in fact not painful at all). That got me hard for several hours, but no real feeling. Kept this up for 18 months and was beginning to give up (doctors said I had a 13% chance) when one day I felt a twinge in the morning, not woody woodpecker, but soemthing more than the limpness of the last 18 months. I then redoubled all these efforts (and it was work) and eventually I got it back but its not the same, in one way it was more intense and in other ways it just different.

Hope that helps!

[leach234]

Everyone I know who did active surveillance on a 4+3 died from prostate cancer.

[JWS13 in reply to leach234]

how many men did you know with a 4-3 that died from AS?

[leach234 in reply to JWS13]

2 and they died horrible deaths

[JWS13 in reply to leach234]

after how many years? were they older?

[Mike1601]

Surgery, they told me in Boston with a PSA of 20 and after an MRI that there was a 90% chance of a cure with the surgery and a 50:50 with radiation. In my then panicked state I went with surgery, thinking being alive was better than not! But I hadent been on here and I especially hadnt seen Tall Allen's posts and I also didnt realise the extent of the ED that would follow. My doc was an expert so incontinence was an issue but my op took 8 hours, so they were slicing away for a while! Actually they sent me an email recently on a new procedure they use, freezing the cells, whether that works or not I dont know but I would explore every option before jumping in.

[Murk]

I've seen many times here the statistics of the various ways to proceed addressing ones PCa. Everyone is different so your reaction to any given treatment will be different. For every one like Mike's story above, there are others that are opposite and successful. Like statistically even with Robotic RP there is 50/50 chance of total success. I had this method and within 3 months things improved. ED and incontinence cleared completely in 2 years. I will say that maybe I'm not quite 100% functional as I was before, but i am now 66 and its working. Just to be sure I get the generic version of Viagra and all is good. I wish I would have know about this drug before it adds a lot to the overall experience.

Even though PCa is slow moving it does progress so read here, get Tall_Allens links to official medical studies and move out with confidence.

[Hidden]

my husband was dx in Nov 2019 3+3 had slides re read and they were actually 4+3…surgery 4 months later and the cancer was already in one lymph node…don’t wait treat it now

[PopCubby]

I was 70 years old with PSA =5.28 when diagnosed with Gleeson 6 (2 of 12 cores) 4.5 years ago. Prolaris biopsy test result was 2.7 (less aggressive, low risk). Also had a multi-parametric MRI. My doctor strongly recommended AS. Had PSA checked every 6 months, and after 3 years had a second biopsy when my PSA rose to 6.9. Was then told I was Gleeson 8 (5 of 12 cores), 2 Gleeson 6, 2 Gleeson 7, 4+3 and one Gleeson 8, and that I would need surgery or radiation with 2 years of ADT.

I was in shock and angry that my doctor let me go so long between biopsies since he assured me at each visit that I was just fine on the AS, and if I ever needed treatment, it would be radiation, not surgery.

At this point, I checked out several surgeons and had my biopsy slides read at Johns Hopkins and Fox Chase Cancer Center. Both reclassified me as Gleeson 7 (4+3), and I learned that radiation without ADT was an option from reading the NCCN Guidelines for Prostate Cancer.

I was offered either 5 treatments of external beam radiation or 2 treatments of HDR Brachytherapy at Fox Chase. I chose the latter in November 2021. I also opted for the SpaceOar injection.

I am very happy with the results so far, and just had my 1 year followup. PSA is 0.3.

Have minor urinary issues; no leaking, but sometimes have some urgency and dripping after urinating. Have ED, but function is improving, especially in the last 2 months using Viagra or Cialis.

If you decide on AS, I would insist on more frequent biopsies than I had. Also, identify the closest cancer center of excellence to you, and get a second opinion. I wish that I had gotten a second opinion when I was first diagnosed, but relied too much on my Urologist, who, by the way, didn't want me to go back to him if I decided to pursue treatment outside of his practice.

Also, read as much as you can about the various treatment options and side effects so you are not surprised down the road. As I mentioned, I interviewed several surgeons and radiologists before making a decision. This site certainly has a lot of great information, and I found reading the NCCN guidlines for Prostate Cancer very helpful.

Best of luck!