HealingWell
Search Close Search
☰

Active Surveillance vs Treatment

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/22/2014 9:33 PM (GMT 0)
Hello all,
I am recently diagnosed. It seems every urologist is very anxious about cutting my Prostate out as soon as possible. After doing some research, I stumbled on "Active Surveillance"
Any thoughts or ideas on this.
I am 55 years old, completely asymptomatic with a gleason score of 6 and a PSA of 7.2 and a negative DRE.
Posted 8/22/2014 10:18 PM (GMT 0)
https://www.healingwell.com/community/default.aspx?f=35&m=3157619

Read the sticky thread at the top of the first page for "Newly Diagnosed," and the link above....for starters...
Posted 8/22/2014 10:28 PM (GMT 0)
You have to have certain criteria for AS. <G7, psa<10, psa density<1.5. no more than 3 positive cores with no core being over 50%. If you meet all of these you should consider it along with other treatment options. An MP-MRI is also recommended to confirm low risk status and a 2nd opinion on biopsy slides from an expert pathologist like Epstien at Hopkins or Bostwick Labs. There are also biological tests on your biopsy sample that can be performed by Bostwick like Polaris that can also be used to determine the aggressiveness of your cancer. Enrollment an an Active Surveillance at a major institution or at a minimum monitoring by a doctor that has a lot of experience in AS.
70% of men meeting this criteria show no signs of progression, but you always have to be prepared for treatment if your cancer is shown to be growing. Getting delayed treatment is very effective if needed. You can always start on AS and change your mind later with very little risk.
You should also review some of the other options that have less side effects than surgery such as Brachytherapy and Cyberknife (SBRT).
Education is your best tool in finding the right treatment for you.
Posted 8/22/2014 10:28 PM (GMT 0)
Welcome.
How many cores were positive? what percent in each core?
AS might be an option if you have few positive cores and a smaller percent in the cores. Some people can't deal with the concept psychologically. Good luck.
Posted 8/22/2014 10:42 PM (GMT 0)
Maroonmanx-

Under NCCN guidelines you would be a good candidate for Active Surveillance, regardless of cancer volume and PSA density. The extra criteria John T quoted are not part of the NCCN guidelines, but some programs still adhere to such stricter criteria.

I don't think it would surprise anyone on this forum that your urologist did not mention it to you as an option. That often happens, and it falls upon the patient to take the initiative and become his own advocate.

- Allen
Posted 8/22/2014 11:30 PM (GMT 0)
My first biopsy was the normal 12 with one positive on 10% of slide
Second biopsy with second urologist three weeks later was 22 slides with 4 positive at less than 20%. Also my prostate is normal size with no nodules or firmness.
Posted 8/22/2014 11:56 PM (GMT 0)
I hesitate to recommend…but , if this were my husband, at 55…I would say.."just wait. a little while..maybe 6 months or so". then check it. I can say this as a wife who has gone through 14 years of ….difficulties…shall we say…. . They rushed us….(my husband at 60) He had many treatments, beginning with radiation, and seeds, and lupron… then salvage surgery, incontinence, artificial sphincter, …The years have gone by….he has had so many problems from the treatments…you just can't imagine. We are now dealing with two permanent ostomies because the prostate cancer morphed into rectal cancer because of the radiation treatments…. and we were at the best hospitals, MSK…. Don't believe the first thing that comes into your mind to do.. divvy
Posted 8/23/2014 12:12 AM (GMT 0)
I've been on AS and have been very happy with my choice. A good doctor will monitor you pretty closely. If my Gleason goes above 6 I will get treatment. Take the time to do all the research to see if this choice is right for you.

Try to use the experience as a way to motivate yourself to live the healthiest lifestyle possible. I sometimes tell myself that my diagnosis will result in me living longer because it jolted me into watching what I eat, trying to control my stress level and getting proper exercise. Who knows if that's true but positive thinking never hurts. :-)
Posted 8/23/2014 1:03 AM (GMT 0)
Hi! And welcome!

I think AS is a great choice.. If you can handle it.. You are a great candidate, by layman's terms.. The rest of us who have since replied to your post have no experience in this.. Keep us posted in your progress! The best to you!
Posted 8/23/2014 1:06 AM (GMT 0)
With the exception of dreamerboy who can offer you the best advise..
Posted 8/23/2014 12:03 PM (GMT 0)
Maroonmanx, I have been on AS for about 2 1/2 years now.  I've used the time to research and learn as much as possible.  I would recommend you look into getting a 3Tesla MRI.
Posted 8/23/2014 12:17 PM (GMT 0)
It seems every urologist is very anxious about cutting my Prostate out as soon as possible.

Maroon, that was pretty much my experience as well, and I wanted no part of it. I'm eternally grateful that I sought alternative treatment. As for AS (no pun intended) I did it for nearly 2 years. I didn't really find it difficult at all. I knew that as long as I was doing AS, I would have no side effects from a treatment that I may never need. As it turned out, the disease progressed to the point where it was considered 'significant' and should be treated. It was still caught early and treated successfully, so the AS didn't hurt anything and it provided me with almost 2 years of freedom from any type of side effect.
Posted 8/25/2014 8:44 PM (GMT 0)
I am also newly diagnosed and my urologist told me I should schedule RP "in less than 2 months". That was in January. I have chosen AS and you can see my stats below. I had less findings of cancer than you, <5% in one core, and my PSA was only 2.8 or so at time of diagnosis. My PSA has gone down to .5 over the past 7 months and I have had no treatment. There is no way that I would do anything other than AS, at least for the short term.
Posted 8/25/2014 9:45 PM (GMT 0)
Wow!!! It just blows my mind how prostate snatch happy these urologist are. I too was told that I need to decide within 2 months.
Thanks for all this invaluable advice.
Posted 8/25/2014 10:42 PM (GMT 0)
I think AS is a very good option for some. I, wish that my husband had just waited and watched the cancer. …his father had PCA some 25 years before, and had the prostate removed. We remembered that his father had suffered from incontinence then(yet he lived to be 95) …So when Peter was found with PCA, he didn't want to do what his father did…(He didn't want the SEs of incontinence…) Instead, he went for seeds, radiation and lupron ..which, we thought would not have the incontinence problem.
I know there are many here who swear by seeds and radiation, I am only talking about our journey. When the cancer returned in 5 years, ( slowly, because he was a good patient, and also checked his PSA), MSK thought we needed SALVAGE SURGERY….which, NOW from our point of view…NEVER DO. In retrospect, which, I always tell my husband not to think about, but somehow tonight, I feel I should talk about to you, men, who are just finding PCA.
The salvage surgery caused major incontinence, a fistula, a burned hole in the rectum, which caused the morphing of the cancer to the rectum.
Now we are dealing with TWO permanent ostomies…My husband had, March 7, an exenteration surgery..removal of bladder, colon, and rectum. The cancer is still here…but slow and hiding. Maybe we should have done nothing…. who knows…
Posted 8/25/2014 11:21 PM (GMT 0)
If you satisfy the AS criteria, I think it becomes a decision around risk and reward. Some people think it is a risk to wait, some think it is a risk to jump in too soon. Neither strategy is wrong, just depends on your perspective. I met many people, did much research, on balance the docs slightly leaned towards AS.....I chose surgery. In large part this was influenced by 1. my philosophy of act smart and act decisively (in life, not just regarding PC); 2. my desire to rid my body of something that could spread and lead to far more disruptive treatment 3. my best friend (and wife) also separately coming to the same conclusion.

We're all different. We do our research, we make the best decision for ourselves based on all the opinions and facts that we can assemble.

Best of luck, I wish you well.
Posted 8/26/2014 1:44 AM (GMT 0)
Maroonmanx, I am currently on AS and so far have had no reason to regret it...but it's early yet. Good luck and thank you for bringing the subject up. i don't read a lot on it here. I think it's interesting the way we go and the different choices we make. It's a trip whichever we go. Dare I say enjoy the ride? The problem i am having currently in Phoenix is finding a Dr. to supervise the AS. Hopefully you will have better luck.
Posted 1/30/2015 6:14 PM (GMT 0)
OK guys, here is the update.
I went down to MD Anderson in Houston in October because they do have an AS program.
After meeting with the "Surgeon" My wife and I elected to proceed with surgery.
Here are the main reasons for our decision.
I do have Prostate Cancer and I would eventually need to have my prostate removed. I was only a Gleason 6.
I could watch and wait for 1 year, 2 years or maybe even 5 years.
Being young (56) and the cancer not having spread yet, the surgery would be easier on me now, the surgeon would be able to spare more nerves. (to me that was a big deal)
If I elected AS, I would be subject to an annual biopsy which I do not tolerate very well. I have to have it done under general anesthesia. plus the risk of moving into a Gleason 7 or 8 and risking a more involved surgery risking the removal of more nerves.
Anyway... All that being said, I had Di Vinci prostatectomy on January 7th, I am now 3 weeks post-op.
No turning back now.
I do have bladder leakage and am doing my Kegals religiously. (about 100 a day)
I do have sensation, as a matter of fact... I have had one orgasm. Yay!!!
However, I have not had an erection yet.
I will discuss this with my Dr at the 6 week checkup
I really do appreciate the support from this group. I hope to be as helpful to others one of these days.
Thank You
David
Posted 1/30/2015 6:29 PM (GMT 0)
Sounds like you are doing fine after your surgery. A recovery time for erectile function at six months is fairly typical so I wouldn't stress too much about that yet. But do talk to your doctor about the options for penile rehab so you can still be anatomically correct when the magic happens.

I talked to two surgeons after I was diagnosed. One of them, my urologist, introduced me to the idea of AS (as one of the options open to me) and refused to make a recommendation about it one way or the other saying it would be unethical. The other surgeon strongly recommended AS.

So, my experience with pushy surgeons is somewhat lacking. I attribute this to the tendency of the universe to become more and more perverse since, had I been correctly diagnosed, I wouldn't have been a candidate for AS by anyone's standards.
Posted 1/30/2015 6:39 PM (GMT 0)
It's always a tough choice.

Sounds like you're recovering well.

Give your body time to heal - I bet things will start coming up soon...

Andrew
✚ New Topic ✚ Reply