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Posted 11/21/2017 7:04 AM (GMT 0)
The Prostate Cancer club.
I can't believe that I just now found this forum. A bit about me and my situation.

Five years ago my GP included PSA as part of my routine annual blood draw and physical.
PSA came back at 4.5, she referred me to my urologist. Ten years ago he had performed surgery as I had an 56cm angiomyolipoma on my left kidney. (now there's a story!) Anyway he did a PSA and DRE saying that things felt normal, PSA came back at 5.0 The next year my PSA jumped to 6.1 and he recommended a biopsy. Ten needle biopsy came back with one out of 10 cores positive. Gleason 3+3. He recommended immediate action, surgery or otherwise. I went for a second opinion to their practice's RO. He freaked out both myself and the wife. This caused me to read and study everything I could about pc.

I decided to seek a 2nd opinion. Went to Kansas University Hospital seeing Dr. Brantley Thrasher who had been highly recommended in the area. His name came up in several publications that I had read.
After much discussion with him, I decided on Active Surveillance. Three annual negative 12 core biopsies, an MRI-guide biopsy and many PSA tests later, finally this year my PSA went from 7.2 to 9.7 in a six month period. Dr. recommended a saturation biopsy in September this year. Forty needles under general anesthesia. Results prostatic adenocarcinoma 5% of core Gleason 3+4 on left and HGPIN on the right.
Meeting with DaVinci scheduled 12/14.

I haven't much though about prostate cancer until I realized that surgery is nearing. Now getting a bit stressed over it. I've lived with it for five years or so asymptomatic, it is easy to forget about.
Now my wife is really stressing about it and I think it is rubbing off on me.

Any advise???

Post Edited (Brisco) : 11/21/2017 12:13:32 AM (GMT-7)

Posted 11/21/2017 9:42 AM (GMT 0)
I get this clearly as I am in a similar place. I have decided to ride the wave of emotions. Some days I don't think about it too much and others I get trapped in what could go wrong. I love these forums and sometimes I avoid them as to not dwell on some the sad stories. Hang in there. Denis
Posted 11/21/2017 11:33 AM (GMT 0)
Brisco, thanks for joining us. My suggestion to you is to also look at the radiation options, they give you a great chance at cure as well.

I'm a 'surgery guy', and I've had a great outcome with no significant side effects (trifecta). As you've already done some research, do some more. From what a number of guys in here have discussed and done, SBRT seems to be the coming thing for nearly non-invasive, fast turn around radiation treatment. (5 treatments over a 10 day period).

If you're set on surgery, get yourself in shape by walking, eating well, get your core strong, and empty that prostate as often as your wife will cooperate.
Posted 11/21/2017 12:37 PM (GMT 0)
So, you had ONE core out of 40 with 5 percent of involvement? Is that correct? And, the G4 was the less volume grade found?

That would not motivate me to leave AS and deal with the side effects of surgery. But, everybody has a different threshold, and mine is formed by years of reading about men dealing with side effects of treatments.

The results of Klotz' 20 year study on AS with some G (3+4) participants does show a significantly higher risk of progression for them as opposed to the G(3+3). But, It was something like 13 percent as opposed to 2 percent. So, you're staying on AS has risks, but that can be closely monitored.

As for treatments, SBRT appears to have very, very good recent results. High rate of non-recurrence and low SE's. Something to consider. Good luck in whatever path you take.
Posted 11/21/2017 12:51 PM (GMT 0)
1. Congratulation on avoiding treatment for five years.
2. I wouldn't like it either if my doctor freaked out on me and my wife. If you can't have a calm discussion of the options with your doctor it's time to find another.
Posted 11/21/2017 1:03 PM (GMT 0)
Advise:
(1) Listen to Halbert, explore the various radiation therapy options, if you haven’t done so already.
(2) If you’re set on Da Vinci RALP, Dr Figenshau at Barnes Jewish in St Louis has an excellent reputation, many HW members went to him for their surgery, sounds like you’re nearby in KS.
(3) Look for other things to stress about — things over which you have no control. If you have children, I’m sure they can supply you with plenty! You’re an intelligent fellow, you and your wife are clearly doing due diligence in learning about your disease, you will make an informed choice from among a number of good but imperfect treatment options. What’s to stress over? You can’t not have PCa — that ship has sailed. For me, stress comes from dwelling too much on what I coulda/shoulda’ve done and trying to change the unchangeable. Focus on the opportunities you still have to make positive choices for yourself and your loved ones, and you’ll find yourself energized. Best wishes!
—SP
Posted 11/21/2017 1:36 PM (GMT 0)
Hi, Brisco. Too bad we had to meet like this, but you've come to a great place to learn what you need to know.

Along with the others, let me strongly advise you to first consider if it is yet time for treatment, and if so, carefully investigate your treatment options. Every treatment option has side effects. You don't state your age, but it is likely that you will have a long time to live with the side effects of any treatments you choose, so choose really carefully.

As ASAdvocate said, with only one of forty cores positive, and that with "only" G3+4=7, you could still stay with AS for a while yet. You seem to have very little tumor load, so things are still very early for you. Also, unless you have a personal need to "get it all out of me" you have numerous treatment options for your pathology. There are other RO's out there -- many of them are very good and very compassionate. If one "freaked you out" then see another. There are numerous varieties of radiation treatment for your grade of PCa, so you would need to see an expert in each specific treatment mode to really get the straight scoop. In other words, if you are considering SBRT, don't ask a brachytherapy expert about it. At best, he won't know all about it. At worst he could mis-inform you and direct you to the wrong treatment for you.

In any case, make sure that the treatment you choose is the right one for YOU. There are many treatments that are likely to cure your PCa, so choose the one that has the side effects that you can best live with. Remember, whatever they tell you about side effects, do your own research to confirm their statements. They haven't seen it all yet, either.
Posted 11/21/2017 3:01 PM (GMT 0)
Brico,

I'll second (or third, rather) what ASAdvocate and Paxton wrote about possibly continuing on AS, given that you have only one positive core. In addition (and relatedly) you should absolutely get a second read on your slides before making a treatment delusion.
Posted 11/21/2017 3:01 PM (GMT 0)
Welcome to HW.

Keep us updated on your progress, you'll do well.

The stress is just going to happen. Just acknowledge the fears, prepare best you can, and do some fun stuff before surgery. Likely the best thing you can do for your wife is to just listen to her.

Hang in there,
Andrew
Posted 11/22/2017 5:58 AM (GMT 0)
First of all, Thanks for all of the replies.
To clear up some things, (I was up late last night typing this) I'm 58 years old. I have had four opinions two RO's, two surgeons. I have decided to stay with my current doc whom I've seen for four years.

In the latest pathology report my cores seem to be intermingled. The report states that two containers, left and right. In other words there are not results given for each core but a consolidated report for left and one for right. My My prostate is normal sized.
I'll contact the doc for clarification on why only two containers for 40 cores.

As I have moved into the "intermediate risk" category, my surgeon recommends against AS. He has been for AS for four years and is concerned with the Gleason increase, as well as the velocity factor of PSA. The second RO I've seen recently recommended that I take action, regardless of which one I choose.
I'm against radiation, that does scare me a bit. daVinci is the route I have chosen. Doc is
www.kansashealthsystem.com/urology/doctors/brantley-thrasher-md-facs-bio

Wife has been doing some reading of this site and is feeling better about things. (thanks halbert!)
Posted 11/22/2017 6:18 AM (GMT 0)
Good work, Brisco. Glad to hear your wife is feeling better.
Posted 11/22/2017 8:43 AM (GMT 0)
Brisco-

First, i think you are understandably unnerved by your recent diagnosis. In your condition, I think the worst decision you can make is any decision you make right now - whatever it is. Do yourself a favor and just let it sit for at least a month. Decide not to decide. Nothing, nothing is going to happen if you just let it sit for a while, and allow your emotional temperature to cool down.

Then, when you are ready, start considering all your options. One of those options is to just stay with active surveillance. Getting a diagnosis of an insignificant amount of a GS 3+4 doesn't have to be a reason to come off active surveillance. Klotz believes there is no reason to stop AS until you find a core where pattern 4 predominates; i.e. GS 4+3. He questions whether PSA kinetics should be used to make that decision. The most important thing in your favor is that you know exactly where it is from the template biopsy, and you know exactly how much you have - and it's very little. It's no longer a guessing game. If you decide to stick with AS, then next time you have a biopsy, you will know exactly where to look to see if it's expanded or not. I personally know a couple of guys in this situation.

You may not have enough tissue from that core, but if you do, one of the genomic tests would be a good idea - Oncotype Dx, Prolaris or Decipher are all good - see which your insurance will cover. If it confirms that you are at low risk of progression, you should feel more comfortable staying on AS. On the other hand, if it shows a more aggressive cancer than your Gleason score suggests, it would be a good time to consider treatment.

While surgery is certainly a reasonable option, focal therapy, brachytherapy, and SBRT are also reasonable options too. All of them should be considered, by speaking to experts in each of those, before coming to a decision, if you eventually decide to have treatment.

Here's a recent thread about decisional regret and its pitfalls: https://www.healingwell.com/community/default.aspx?f=35&m=3929981
Posted 11/22/2017 9:52 AM (GMT 0)
The challenge with this diagnosis is being in this confusing stage. I have a small amount of 3+4 <5%. And my decipher said intermediate risk for metastasis. So my docs recommend treatment.

The other factor probability is there is some probability my disease is a bit worst then we think Many have had upgrades post RP. Also, some have been downgraded post RP. So it comes down to a gamble of probability.

For me, the decision is am I willing to risk it getting worst or do I get at it proactively? I have decided to treat it. I was being treated at Yale but have shifted my care to central Florida and am Meeting Dr. Patel and a Celebration hospital RO in a couple weeks.

I do agree that we have time and in my case, the first few months were a tidal wave of emotions and confusion. I am much more at peace as I move into the action stage.

I wish you peace. If there is anything I can do to help please let me know Denis
Posted 11/22/2017 9:59 AM (GMT 0)
Brisco—
If I had Tall Allen and Paxton and ASAdvocate all urging me to cool my heels for awhile, I’d take that very seriously. It sure seems like you can afford to take more time. Sounds like you have a good longstanding relationship with your surgeon and have consulted some ROs. Maybe bring some of the concerns the very knowledgeable HW vets have raised to their attention and get their response, at the very least.
Posted 11/22/2017 12:24 PM (GMT 0)
SP, thanks for the vote of confidence....I'd also agree with those who are suggesting a period of moving from the emotional reaction to a thoughtful one. That being said...if the uro AND multiple RO's are all saying that it's time to choose a treatment and get it done... then it's time to choose a treatment and get it done.

I get it. I considered radiation for a bit...and rejected it. IMRT because I couldn't manage 40 trips, 2 hours each way. Brachy, I'll admit, did creep me out. If SBRT had been available near me at the time, I might well have gone there. So, I wound up with surgery. That's the short version.
Posted 11/22/2017 4:37 PM (GMT 0)
Welcome to the club!

You've been living with this for a while. Now that your condition has changed a bit, don't take that as a reason to begin treatment right away. From what you say, conventional wisdom says you still have time to consider all options. I'm a surgery guy, but will tell you I could have educated myself better about radiation. It seems advancements in PC treatment are happening in the field of radiation. There are a number of members here who have chosen radiation. Tall Allen especially is a wealth of information about it.

Bottom line is learn what you can, and then make a decision what works for you and your family. You should be fine.

Good luck.
Posted 11/22/2017 5:32 PM (GMT 0)
Hi Brisco,
With all the previous great advice the only thing I would add is that if you decide on treatment seek out the very best practitioner and team you can find. Don’t rule out traveling to do so. With my stats some may wonder why I didn’t chose AS. I’ve had three total joint replacements and I could not risk even the small chance of infection associated with additional biopsies. I’m extremely happy I chose SBRT for treatment. Five easy treatments without surgery, catheters, pads, ED, penile shortening, climaturia, etc. The latest data suggests that my chance of recurrence to be less than 2%. I had no urinary or ED issues prior to treatment and don’t today.
Posted 11/24/2017 2:24 AM (GMT 0)
Brisco - welcome to this site. None of us are glad we had to be here, but thankful for a group to learn and share with.

18 months ago i was just getting onto this forum and learning. After consulting with my doctor, my euro and and RO, i chose surgery. I don't regret my decision, but i do have a few long term SE's that i would prefer not to have. However, i have a full cure and that was priority 1.

If i was in that same place today, i would spend more time reviewing the non-surgery options. I might end up making the same decision again, but i might choose something different. Options keep getting better.

Best of luck to you. In the end, it is your choice - no one else can decide for you or second guess your decision.
Posted 11/24/2017 4:25 AM (GMT 0)
I did not find this forum before I made my decision. I chose rp because my uro surgeon said that was the quickest method. He also said I may need to use Cialis after the RP. Well when he got in there HE made the decision to take ALL MY NERVES. I am 75, you are 58. Side effects. Cialis does nothing. Have to pump with a suction device every day. Use injections twice a week to get oxygenated blood flow whether I want sex or not. Your penis will atrophy and shrink up if you do not do this.. 30% of men are allergic to one component in the injections, so I had to switch to another formula that needs 40-50 units to create a useable erection. A little squirt is not to bad but squeezing larger amount into your penis is a bi-ch. Sex with injections is no where as enjoyable as before. Incontenence is much better after 4 months but when I get tired and am working it just flows through. Get all the true facts of each treatment and what the side effects really are.
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