Active Surveillance or Surgery?

jkremer1

Hi, I'm 53 years old and was diagnosed with Stage 1 prostate cancer a few weeks ago. My Gleason score is 6 (3+3) in 3 cores from the left lobe with no perineural invasion seen. My PSA was 3.58 on finasteride. My Urologist recommend Active Surveillance at this point, opposed to surgery or radiation. I'm having a hard time wrapping my head around just sitting and waiting to see if it gets worse, or spreads instead of being proactive and getting surgery. Has anyone here opted for active surveillance, and ifso how long have you been doing it with no change in the cancer? I know its just a matter of time before treatment is necessary, just wondering how long before it would be necessary. Any input or suggestions on what I should do would be greatly appreciated. Thank you

On_A_Journey

Hi @jkremer1, welcome aboard. It's good to see you here, but I'm sorry that you are, if you know what I mean. Yes, it can be pretty daunting especially at the start of your journey, with much to learn and many decisions to be made.

Active surveillance is a fair enough course of action for now in my opinion. Your doctor needs to know how aggressive your cancer is and needs the following bits of information to do so: Your Gleason score, your PSA, and your PSA doubling rate. By waiting a while and undergoing regular PSA tests, the doubling rate can be determined more accurately each time, and your eventual treatment can be better timed. Who knows, your readings might remain quite stable for a fair while yet. In the meantime, you get to keep enjoying life without side effects and having the time to better educate yourself.

Do you have previous PSA results?

We are similar. I was 52 when diagnosed (61 now) after my third biopsy, with a PSA of 7.0 and Gleason 3+3 at diagnosis. This was two years after my initial PSA test of 6.5 when I turned 50, just because I thought I should get it checked due to family history. Even after I was diagnosed, I waited until the next PSA test, which was 10.6 and due to that spike, I had surgery shortly after.

jkremer1

Hello, and thank you for taking the time to reply to my post. Yes, my head has been spinning over the last few weeks trying to educate myself to make the best possible decisions moving forward. I have been on TRT for the last 10 years or so and my PSA gets checked every 6 months. Its consistently been in the high 2's or low 3's. Over the last year It went from 3.07 to 3.58 on finastride, so my urologist ordered the biopsy. I know I will ultimately need treatment and am leaning towards surgery. Did you have the robotic prostatectomy? If so, how bad is the recovery and side effects you may have experienced? Of course I'm very concerned with the strong possibility of permanent E.D., that's one reason I'd like to see if I can mentally handel Active Surveillance and hold off on surgery for as long as I can, but I am more on the hypochondriac side, and just knowing I've got cancer in me is going to be very hard for me to take without pulling the trigger "too soon" on the surgery.

swl1956

Watch this:

https://www.youtube.com/watch?v=aotF2SPzCmU

On_A_Journey

No, I had the traditional open surgery. My surgeon didn't offer the robotic surgery and, basically, I couldn't be bothered looking for someone else.

Even though I was already having some ED issues beforehand, I experienced some nocturnal semi-erections during my hospital stay! It was actually a bit painful with the catheter in place, but it was a happy pain! 😉

I believe that the robotic procedure is more likely to preserve function, but don't quote me on it. At the end of the day if you are one of the unlucky ones, there are several solutions available to you down the track.

jkremer1

https://csn.cancer.org/discussion/comment/1713268#Comment_1713268

Thank you! That was very informative, and certainly helped put my mind at ease a bit.

Clevelandguy

Hi,

At this point active surveillance + biopsies every so often can keep you away from surgery or radiation. Know the location of the cancer so it does not migrate outside of the Prostate, PMSA PET scans are good for that. I know it’s a hard decision to let the cancer in your body. I had 3+4 and pleural neural invasion so the choice for me was easy, I had surgery.

Dave 3+4

centralPA

@jkremer1 how many samples were taken in your biopsy? Did you have an MRI first? What were the results of that?

I have been doing AS for 2 years. I will happily do it for the rest of my life if the disease risk stays low. I’m 3+4=7, a wee bit of 4, low volume total.

jkremer1

Good Morning. I had an MRI back in 2020, that detected no cancer. I had the biopsy done in january of this year, they took 12 samples, and 3 of them were <5%positive. I am leaning towards active surveillance at this point, but it is hard after talking with friends and family and everyone advising me to just remove the prostate and "get rid of the cancer". It's such a catch-22, if I remove the prostate I will be dealing with all the negative side effects for the rest of my life. If I leave the prostate ill be worried about it spreading. I am just fearful of getting in a situation where I should have been more proactive and now it's too late. May I ask how old you were when you were diagnosed? Have you been getting your PSA checked every 3 months, along with an annual mri or biopsy?

jkremer1

https://csn.cancer.org/discussion/comment/1713277#Comment_1713277

Hello, thank you for the reply, I'm going to ask my urologist for a pet scan to be sure the biopsy was accurate before deciding on active surveillance to be sure I'm making the correct decision. Did you have any major side effects from the surgery and was it robotic?

fjubier

Just curious, I am also on AS with 3+4 for a year now and I am due for repeat biopsy tomorrow. My PSA doubled in one year from 4.4 to 8.3. How is your PSA trending ? Did you do a repeat MRi and biopsy over the past 2 years ?

jkremer1

I had an MRI back in 2020 that showed no sign of prostate cancer. It was just enlarged with a PSA in the 3's. I had the biopsy done in January of this year because my PSA had been slowly rising, it was 3.58, but that is being on finastride, so I believe you are supposed to double the score. I have also been on testosterone replacement therapy for about 10 years too, so im not sure if that elevated the PSA or caused the cancer. I am due for my first PSA in April since being diagnosed on January. I am going to insist upon a new MRI. Good luck with your biopsy tomorrow.

Old Salt

There's a person who occasionally posts on this forum who has been on AS for 10+ years.

jkremer1

Good afternoon, that is certainly encouraging. Do you happen to recall his gleason score? My urologist has had someone on AS for 24 years.

Clevelandguy

https://csn.cancer.org/discussion/comment/1713283#Comment_1713283

Hi,

Yes I had robotic surgery back in 2014, still undetectable. I do drip a drop or two during heavy exercise or strange lifting movements. For that I wear a daily light pad. Not as firm as I use to be, slight Ed but still usable to complete the task. For me I am very happy not to have cancer on my mind every day even with the side effects.

Dave 3+4

jkremer1

Hi I'm glad it has been undetectable for ten years, that is great! That is my dilemma at the moment. Do I do active surveillance and have it in the back of my mind all the time, or pull the trigger on surgery (too soon) and deal with side effects, but not have to worry about it having cancer in my body.

centralPA

https://csn.cancer.org/discussion/comment/1713284#Comment_1713284

Hi @fjubier

My case is a little different. I also had BPH to the point of urinary retention that I treated with surgery (HoLEP) about 4 months after my diagnosis. It removed the inside of my prostate, leaving just the peripheral zone. That surgery dropped my PSA from over 5 to under 0.5. It has since climbed to 0.87, and has stayed there the last two checks (every six months). They also looked at the removed tissue and there was no cancer in it. That means what I had is still there, but that there wasn’t something terrible we missed on the biopsy. I haven’t had a biopsy since.

Your doubling rate of a year is more concerning.

@jkremer1 , I’m kind of angry on your behalf that they didn’t do another MRI prior to the biopsy. It’s best practice. The 2020 one is old data, and so is useless. I absolutely for sure would want one now.

jkremer1

I completely agree. Like I said, I am absolutely going to insist they give me a script for another MRI soon. I want the be sure the biopsy is correct and it's not more involved than the biopsy showed. The BPH is one reason I'm considering the surgery sooner rather than later. I have to pee 3 to 4 times a night, sometimes more if I drink anything prior to going to bed. Wishing you the best on your biopsy tomorrow. If you feel like sharing the results when you get them, I'd love to know.

centralPA

https://csn.cancer.org/discussion/comment/1713306#Comment_1713306

I chose to treat the BPH in order to make myself a better candidate for radiotherapy, along with treating the BPH of course. My prostate was 140cc, and the BPH symptoms made me a poor candidate for radiation. Now I’m good t go, but hope that I won’t need it.

You might consider moving your care to a center of excellence because if they gave you a biopsy without an MRI they’re probably not one.

Old Salt

https://csn.cancer.org/discussion/comment/1713293#Comment_1713293

Actually, those who have had therapy of one kind or another do worry about cancer cells that might still be around and 'spring to life' at some point in time. That's why PSA testing is continued for many years, typically.

jkremer1

You are right, I guess you never stop worrying before or after treatment. When I first got diagnosed I assumed that if you have prostate cancer, you just remove the prostate and you were cured. I was a bit taken back when I learned that isn't the case.