Active Surveillance or Surgery?
Comments
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You know Oldsalt is kinda right. I am still concerned every time I get a PSA test but I worry a lot less knowing my Prostate has been removed. Knowing my cancer was getting ready to leave the barn, I had no choice but to treat it with surgery or radiation. But then again that is a decision every man makes when they discover they have Prostate cancer. If I had 3+3 with the cancer not close to escaping, I might have chosen AS for a while but in my opinion knowing you have cancer in your body would be more worrisome than when I have my yearly PSA test.
Dave 3+4
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I completely understand. I am a hypochondriac, and just knowing that there is a cancer in my body is very unnerving. If a Gleason 6 was called "pre cancer" it would be a lot easier to just go with AS for a while, but you hear the word "Cancer" and anyone's natural instinct is to want it removed as quickly as possible. Then there is also the constant thought of what if they got the biopsy wrong and it is a really a 4 + 3 (or worse) instead of a 3 + 3, not to mention everyone you talk to is giving you different advice. It's just been a Roller coaster ride over the last 3 weeks.
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Hi Jkremer1,
This is a difficult road psychologically. Yes AS is hard but continue to educate yourself on all options. I am on AS , when I began I was 3+3 in two spots. At my first annual follow up biopsy I had an additional spot of 3+4 with less than 5% of 4. My Doc supported further AS. My PSA had jumped up and he coached me to to wait 2 months prior to treatment and my PSA then in fact did drop . Steady increase in PSA is a concern but in my case it bounces around up and down, perhaps some BPH driving it. I am in a support group where some men have been on AS for over 10 years and some are metastatic on diagnosis. One of the difficulties with AS is family members who will say " it's cancer get it out!" Sometimes that's the right answer and sometimes not and its hard to explain, takes a lot of work and confidence in your physician to make the right call. For me if I go over 10 on PSA I likely will pull the trigger on Cyberknife or Proton. In the meantime I try to be calm. Have a look at this study on AS, I find it helpful. To me it suggests that since we have this diagnosed and if we continue with AS or other treatment as required we will likely die from something else ( not a positive thought but it relieves a little of the prostate cancer pressure!). https://www.nejm.org/doi/full/10.1056/NEJMoa2214122
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I wish I had waited. I could have, my PSA was only 3.98. Biopsy showed C in 4 of twelve, but I wanted the cancer out and the surgeon was behind on his Porsche payment so I opted for the Robot. Nothing below the belt works as it once did. Advice? Take your time.
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Hi, thank you for your reply. I'm leaning towards As, but I do have an appointment with the Surgeon that preforms the robotic surgery next month so I can ask him all sorts of questions. One of them being if he thinks I should wait a bit to see if it progresses from 3+3 before I pull the trigger on the surgery. I am afraid he will try to scare me into having the surgery, because that is how he makes his money.
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There are no guarantees in any of this. The best you can do is make the most informed decision you can for your personal situation and don't look back. Get as much info as you can and get second opinions from docs. It can be a PIA but, worth it in the long run. All treatments can have side effects. Even AS can have a side effect on the mind if you let it.
I was a few years younger than you when I was first diagnosed with gleason 6 (3+3) in 4 cores. Faced the same decisions AS vs. treatment. Which docs to use, which facility to go to. I did AS for a bit, had a follow up biopsy that was still 3+3 but, 2 cores had high volumes 70% & 100%, PSA was in the 4s at the time. My AS doc was leary for me to stay on AS but, surgeon said no big deal to stay on AS longer. My next PSA test broke 5 and I was done with AS. When I got my surgery, pathology was 3+4. If you get surgery, you'll know true pathology vs. a sample from biopsies. Sometimes post surgery pathology is better sometime worse. Again the biopsy is only a sample but, it is the only way to confirm you do have PCa. I'm coming up on my 2 year post RP PSA and like most others anxiety creeps up around test time. I'm 100% continent and have mild ED, overcome with Viagra.
Best of luck in your journey.
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Ron.Ski is right on. We all have to make our best decisions and not look back. I am on AS but it’s possible I miss a chance for treatment, a treatment may have saved someone else’s life but regrets can creep in because no one really knows for sure. I am not a doctor but I think it makes sense to be able to speak with your doctor like a colleague as well as a patient. Best of luck to everyone on this thread and be easy on yourself as this seems to be the most complicated set of choices I have ever had to work through.
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Hi, how long have you been on AS? Have you found it mentally difficult? I just got diagnosed, and am going to try AS, but it's only been 3 weeks and one minute I'm mentally fine, then the next minute the anxiety creeps in. It's almost like I feel like I'll never be able to fully relax again.
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I would suggest you have a repeat MRI done to compare with the 2020 study. If there is little or no high risk PIRAD lesions, you are 3+3 with low volume cores, then time is on your side.
You do not need to make a decision to do anything and you can see how AS suits you. If it does not and you have surgery or radiation in six months or a year it is very unlikely your disease would progress significantly (assuming your repair MRI is similar to the 2020 study).
I completed one year of AS and had to pull the trigger due to high volume disease, perineurial invasion,.... I am now 3 weeks out from a robotic prostatectomy and turning to this blog for support and comradery. I am early into all the "cost," of intervention in terms of incontinence and ED.
I think it was the right decision (negative margins) but I am still quite incontinent (as to be expected this early post surgery).
Anyway, hello Jkremer1, hope this rant helps.
jc
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Hello jcosta, thank you for the reply. I plan on getting another MRI next month to compare to the old one, and like you said if everything confirms it is in fact 3+3 I will start with AS, if it has progressed I will have the surgery you just had. May I ask what your gleason score was when you were diagnosed? How bad has the recovery been physically in the first three weeks? Wishing you the best of luck with your recovery.
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I have been on AS for almost two years. I do think about it but it gets better with time. I am always researching though, that back of the mind concern keeps a healthy respect in place. It has caused me to improve diet and exercise. Some need to come off AS more quickly while others can be on for more than a decade, or life. If you’re stressed find a PCA group to meet with, it helps talking with others. I meet online monthly if you would like a link let me know. Google PCRI they have coaches available, again it helps to talk.
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@jkremer1 a lot of your anxiety is due to not knowing. Some of that is fundamental, you just don't know exactly what is going on down there in the prostate. Neither do the doctors. But some of it can be addressed by continuing to do your research. Lots and lots of science backing up what your urologist is suggesting, for example...
For those with favorable intermediate PCA (of interest to me)
The use of active surveillance for men with favorable intermediate-risk prostate cancer has increased markedly. Over half of men with favorable intermediate-risk prostate cancer on active surveillance remained free of treatment 5 years after diagnosis. Most men on active surveillance will not lose their window of cure and have similar short-term oncologic outcomes as men undergoing up-front treatment. Active surveillance is an oncologically safe option for appropriately selected men with favorable intermediate-risk prostate cancer.
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Hello centralPA, thank you for the information. It certainly helps to ease some of the Intrusive thoughts and anxiety when reading studies that show favorable results of active surveillance. I'm hoping if I can get through 6 months or so of active surveillance with no alarming changes in PSA or anything else it wil become a bit easier to deal with mentally.
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Try this site, they have a monthly conference for the newly diagnosed. I still like to drop in, if I have a PSA bump or another question its great to have help. There is a retired ( I think ) Urologist who attends who has been on AS for many years so he knows from the doctors and patients side. You will also have exposure to folks who experience more advanced disease which is challenging but very educational for our journey https://www.prostateforum.org/
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I was 3+4 , PSA =11-12, Group 2 intermediate risk. Robotic surgery went very well. Home the next morning, pain resolved by 1.5 weeks. Now working on continence and ED rehab. So far pleased with progress although you have to be prepared to be leaky for a while.
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