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Recently diagnosed -- Would surely appreciate any comments/perspectives

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Posted 8/11/2017 10:23 PM (GMT 0)
I was just recently diagnosed with PCa. Here is the info:

Age 52
Dx - 8/17 (fifth biopsy); Sloan Kettering NYC
2 of 14 cores:
right base medial, G6 (3+3), 1%, linear amount 0.1mm
right apex medial, G6 (3+3), 3%, linear amount 0.5mm
Prostate measurements: 6.4 x 3.4 x 3.8 cm; volume 43 cc
Previous six PSA readings:
10/24/14 – 6.24, Free PSA = 20%
4/24/15 – 6.14, Free PSA = 21%
11/6/15 – 5.86, Free PSA = 21%
5/20/16 – 5.75, Free PSA = 26%
12/2/16 – 7.73, Free PSA = 24%
6/16/17 – 6.19, Free PSA = 24%

I've set up appointments to see both a surgeon and a radiation oncologist.

My oncologist specified that I am in a "very low-risk category," and encouraged me to gather as much information and opinions as possible before making any decisions.

It was a lot to process (yer mind starts racing), and I'm glad my wife was there...

Any thoughts or comments from the very knowledgeable and insightful folks here would be greatly appreciated.

Thanks!
Posted 8/11/2017 10:27 PM (GMT 0)
2 G6 tumors with small volume is low risk. You've got lots of choices including AS (although after 5 biopsies, I don't know how many more are advisable)
I'd keep. Close eye on the PSA while you educate yourself to the max, and speak to many Drs in different disciplines.
Including one that you tell u just want an opinion about AS, and if you get treatment, he's not the guy, so he has no skin in the game.
Posted 8/12/2017 1:13 AM (GMT 0)
All of your treatment options are open to you. AS, surgery, RT. If you're thinking of treatment I'd look at the radiation options closely.

What's going to drive you nuts is that any of those would work just fine and you'll have a hard time picking.

Andrew
Posted 8/12/2017 3:26 AM (GMT 0)
Yes this is certainly "very low risk" - I've honestly never seen any lower! No wonder it took 5 biopsies to find it. I think every man over 50 would find some if he looked as hard as you did. Well, now that you've found it, I guess you'll have to be on active surveillance. Don't be too surprised, however, if they find nothing on the confirmatory biopsy. You're in good hands at MSK.
Posted 8/14/2017 3:15 PM (GMT 0)
I very much appreciate everyone's input here -- Thanks so much!

My first move was requesting my slides sent over to Johns Hopkins/Epstein for a second opinion.

I'm meeting with both a surgeon and a radiation oncologist, respectively, in a little over a week. I'm compiling a list of questions to ask each professional -- I want to ensure that I don't forget to ask either of them about important info.

Please feel free to contribute any questions you think I should include.

Thanks!
Posted 8/14/2017 3:57 PM (GMT 0)
There's a great list of questions to ask in the sticky thread at the top of the forum:

www.healingwell.com/community/default.aspx?f=35&m=2652250

Andrew
Posted 8/14/2017 4:24 PM (GMT 0)
My risk (as can be seen in my signature below) was a little higher than yours, but still a G6. It's always tough hearing the "C" word. I know for me it was devastating and in as much as I knew I was at a higher risk of getting Prostate Cancer and got tested regularly, hearing the Dx for the first time was very hard to deal with. Try using those feelings as a motivation to learn more about the disease and the kinds of treatments that are available out there. The number of treatments available as well as the research documenting the effectiveness of each one can be overwhelming (and confusing) at times. There are a lot of experienced members on this board, so if you have questions that come up while doing your research, do not hesitate to ask.
Posted 8/17/2017 2:40 PM (GMT 0)
Just want to check in regarding if there's any other important areas I should be investigating between now and my meetings with both a surgeon and a radiation oncologist next week.

I got the process of having my slides sent over to Johns Hopkins for a second opinion rolling.
I've been reading up on the benefits/drawbacks of surgery and the various radiation techniques.
I've been gathering much information from the knowledgeable/experienced folks here.

My urological oncologist at Sloan Kettering has recommended active surveillance (AS) for my case and, intellectually, that makes sense to me, but on the emotional/practical side, my brain, of course, follows the: "We've found this cancer early -- the goal of all these tests -- and now we're going to wait? Really?!"

Any one else on AS have those feelings?

Thanks for all comments so far.
Posted 8/17/2017 2:46 PM (GMT 0)
H4h, I was a POSSIBLE candidate for AS, was advised I could consider it pending MRI results, by dr Scholz, at Prostate Oncology in Marina Del Rey. But I passed, and chose surgery, largely for the reason you just stated.
Full disclosure: I was predisposed to surgery to begin with.

Studies show, in the right situation, AS really makes a lot of sense, and is safe, generally speaking. I think many people however, discount the importance of the emotional side. JMHO. It's a very personal decision, that only you can make. I wish you the best.
Posted 8/17/2017 3:15 PM (GMT 0)
Clearly AS appears to be the best treatment path to begin. Also, clearly surgery would be the worst treatment path to begin.

You are the low risk poster child that using surgery would be the best example of unnecessary over-treatment. This is what the medical community has been trying to resolve over the last 10 years or so. In the middle would be radiation therapy as it presents far less significant side effects than surgery.

But if you do not yet need treatment why use any treatment method other than AS. Your current information indicates you have a very small amount of a cancer that is neither harmful nor in any way life threatening. This is, fortunately, the type you can truly live with. AS will let you know when you might have to consider something more.
Posted 8/17/2017 3:17 PM (GMT 0)
Hi H4H

Sorry your here but your results are very favorable as everyone has said which is good news. You could get a prolaris test done on the biopsy, its is a gene test that shows the aggressiveness and it may also give you more comfort doing AS if the results are favorable.
Posted 8/17/2017 4:41 PM (GMT 0)
AS is a good option for you.

But, you need to consider the emotional side of it. If you go on AS and end up with mental/emotional stress from not getting treated, then you might be better off getting treated.

You're going to have to sit down and have a talk with yourself and decide which way you want to go.

Either will likely work for you, but I'd still vote for AS if you can tolerate it.

Andrew
Posted 8/17/2017 4:50 PM (GMT 0)
Sorry about your diagnosis...I got the bad news at about the same age. Re AS, I do think you need to be psychologically equipped to handle it. But, other than potential emotional aspects, I really don't see any downside. It's very safe--long-term studies show that guys on AS do the same as guys that seek out treatment.

Plus it buys you time. All treatments have SEs. Hopefully you can spend the rest of your life on AS, but let's say after five years your cancer progresses and you need treatment. Well, you just gave yourself another five SE-free years, which is nothing to sneeze at.

One other thought: from my perspective, the point of all the tests isn't simply to "find cancer." It's more to find out what kind of cancer you might have and to give you the info to decide how to treat it.

At the end of the day it's like Pratoman says...it's a personal decision. Every one here will support you no matter what you do.
Posted 8/17/2017 5:11 PM (GMT 0)
Hey Hope! Sorry you had to look for us but glad you found us!

Please see my stats below. Very similar to yours and close to the same age at Dx. Your PSA is higher than mine ever was but as people will tell you... PSA is not a test for cancer, it's just an indication of prostate activity, which could have many causes.

Before you do anything, get a second opinion on the biopsy, I'm sure others have told you, or will tell you the same.

I chose AS, and I'm not really even on a very strict AS protocol. I have a DRE and my PSA levels tested every 3 months (no lectures please nono ). If you were to give AS a go, I would recommend you find a "real" AS program.

I am so happy I went this route. As I read the horror stories of the POSSIBLE side effects of all treatment options I want to put off treatment as long as possible. Incontinence, ED, penis-shortening, radiation SEs, all of it gives me great pause and I am in no rush for any radical treatment.

Just one man's opinion and experience, hope it helps.

.
Posted 8/17/2017 6:35 PM (GMT 0)
H4H-

Yes, everybody has those feelings. We all have emotional baggage we carry about cancer in general. The mistake is in thinking all cancers are alike, or even that all prostate cancers are alike. To get over that initial cancer panic takes time. I believe that no one should make any irrevocable decisions about treatment within a month, and probably not within 3 months of the diagnosis. There are PC support groups where you can get peer support for your natural emotional reactions. I also found psychotherapy and mindfulness to be helpful. Be wary of well-meaning friends and family who don't really understand the nature of the disease. They sometimes exert emotional pressure.
Posted 8/18/2017 2:23 AM (GMT 0)
Given your history and numbers I'd press hard for consideration of your individual situation if you go with AS, rather than just going along with some cookie-cutter approach of AS guidelines. You're young, you've had five biopsies already, you have only the barest whiff of cancer found in one biopsy, and you have a long history of relatively low and stable PSA results. With all that I'd resist the standard second biopsy within a year of the first positive biopsy -- given your individual situation there's a lot of evidence that what you have will progress very slowly if at all. Perhaps your next biopsy could be pushed off a few years, with periodic PSA readings and DREs to keep tabs on things.
Posted 8/18/2017 2:49 AM (GMT 0)

Froggy88 said...
Given your history and numbers I'd press hard for consideration of your individual situation if you go with AS, rather than just going along with some cookie-cutter approach of AS guidelines. You're young, you've had five biopsies already, you have only the barest whiff of cancer found in one biopsy, and you have a long history of relatively low and stable PSA results. With all that I'd resist the standard second biopsy within a year of the first positive biopsy -- given your individual situation there's a lot of evidence that what you have will progress very slowly if at all. Perhaps your next biopsy could be pushed off a few years, with periodic PSA readings and DREs to keep tabs on things.

Wow! Froggy, your stats and age are almost identical to mine, including the PSA at time of Dx and the much lower current PSA. I'm on AS 3.5 years now and have never had another biopsy and don't feel the need to with my low, stable, numbers. Just the DREs and PSA tests.

Curious, did your PSA drop drastically after your initial biopsy?
Posted 8/18/2017 2:55 AM (GMT 0)

Tall Allen said...
Yes this is certainly "very low risk" - I've honestly never seen any lower! No wonder it took 5 biopsies to find it. I think every man over 50 would find some if he looked as hard as you did. Well, now that you've found it, I guess you'll have to be on active surveillance. Don't be too surprised, however, if they find nothing on the confirmatory biopsy. You're in good hands at MSK.

Ha ha! I might have him beat, I had <5% in 1 core! Who knows what less than 5% means though. tongue
Posted 8/18/2017 3:10 AM (GMT 0)
What I'd suggest before deciding on any option other than Active Surveillance, is to research the sexual side effects of treatment (you can find lots of information at this forum), then weigh the consequences of non-treatment (AS) vs. treatment and decide which one is the best choice--emotionally and physically--for you.

My own anecdotal evidence (one guy's experience) is that if AS had been a good option when I had a prostatectomy as it is today, I would have chosen it for my own low-risk G6. Once you've had treatment, you can't, like a vasectomy, undo it. And my opinion is that MDs offering treatment advice understate sexual side effects.

Welcome to the forum and best to you on your decision.
Posted 8/18/2017 6:26 PM (GMT 0)
Just a formal "thank you" to everyone who has responded to this thread. All of the insight and perspective is very valuable to me -- I very much appreciate it!
Posted 8/18/2017 8:18 PM (GMT 0)
Hope4, being an AS patient at MSKCC for over 5 years I thought I would chime in. It seems MSKCC is very Pro AS. They say they have over 600 AS patients. There AS program consists of PSA every 6 mo. MRI every 18 mo. and biopsy every 3 years. Best of luck to you!
Posted 8/19/2017 11:44 AM (GMT 0)

GeetarMan said...
Wow! Froggy, your stats and age are almost identical to mine, including the PSA at time of Dx and the much lower current PSA. I'm on AS 3.5 years now and have never had another biopsy and don't feel the need to with my low, stable, numbers. Just the DREs and PSA tests.

Curious, did your PSA drop drastically after your initial biopsy?


The PSA did drop, and given the circumstances the high PSA reading looks suspect. It was by my GP on a blood draw done right after she found a nodule on the DRE. The more recent lower reading was on a blood draw after abstinence for a few days, after staying off the bike, and (most importantly) without someone groping my prostate in the hour before the blood draw.

I'm actually scheduled for another biopsy later this year. There is a very real nodule that has been felt on multiple DREs and showed up on an MRI (PIRADS 3), so I figured I'd go with a second biopsy to be on the safe side, in case the first one missed something. But unless this second biopsy shows something more significant than the first one, I'm fixing to just keep after this with PSA tests and DREs for the next few years.
Posted 8/19/2017 1:25 PM (GMT 0)
As has been mentioned, there is a long term study of AS that shows there is NO difference in long-term effects from AS, when properly managed. The whole point of AS is to wait until something significant does show up--and then take action. It is, properly speaking, a treatment strategy.

The mental/emotional side of it is significant, and we need to keep remembering that. Some people just aren't cut out for it, and there should be no shame related to that fact.

As far as the endless surgery/radiation discussion goes, there are valid reasons to go either way. I think, eventually, that something like SBRT will become the standard of care for low to intermediate risk patients, and surgery will be reserved for unusual cases with high tumor volume or for those who cannot risk radiation for some reason or other.

As a surgery guy who has essentially zero side effects, I tend to bristle whenever I see a post that states uncategorically that surgery "always leads to the worse side effects". Always is a term that needs to be shelved, IMO. Always and never are rarely appropriate.
Posted 8/19/2017 2:00 PM (GMT 0)

halbert said...

...As far as the endless surgery/radiation discussion goes, there are valid reasons to go either way. I think, eventually, that something like SBRT will become the standard of care for low to intermediate risk patients, and surgery will be reserved for unusual cases with high tumor volume or for those who cannot risk radiation for some reason or other.

As a surgery guy who has essentially zero side effects, I tend to bristle whenever I see a post that states uncategorically that surgery "always leads to the worse side effects". Always is a term that needs to be shelved, IMO. Always and never are rarely appropriate.

Mega Ditto!!!!

Posted 8/22/2017 5:21 PM (GMT 0)
Again, thanks very much for all the responses.


toyoung said...
Hope4, being an AS patient at MSKCC for over 5 years I thought I would chime in. It seems MSKCC is very Pro AS. They say they have over 600 AS patients. There AS program consists of PSA every 6 mo. MRI every 18 mo. and biopsy every 3 years. Best of luck to you!

toyoung:

You mention that you have been in AS at MSKCC for more than five years and that it consists of an MRI every 18 months and a biopsy every 3 years. In you signature, however, it appears you've had a biospy every 14-18 months and just one MRI. Was this particular schedule dictated by your PSA scores?
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