Welcome new member Dave '68

In another thread, Dave '68 posted the following... please welcome him...

Dave '68 said...
Never thought I would asking to join this club, but here I am......
Looking for some people who were me several years ago that might be able to give some perspective 3-5 yrs out.
Age: 53
Elevated PSA during routine annual physical blood test (test done by accident since I had no symptoms or family history)
PSA 6.2
Biopsy: 6 of 12 Cores tested positive. Gleason: 4+3 = 7

Robotic Surgery Apr '20
Post Op: Gleason 4+5 = 9
Grade:: pT3a N1 (2 out of 10 lymph nodes positive; negative everywhere else)
PSA Test has been Undetectable since surgery (4 tests)

I've never had any health issue and I'm in decent shape. Still very active.
As I'm sure many of you have been through, you stay positive but there are times when your mind slips to the darker side of life expectancy especially given my relative young age. Curious who out there fits this background and what your experiences have been.

Thanks in advance,

Dave

Hi Dave, and welcome to the forum. Feel free to ask any questions at all! It must have been an unpleasant shock when the pathology came back as a 9 rather than a 7. You've done well so far, and have made it longer without a detectable PSA than I did. Without intending to make you feel worse, let me lay out the map of the road I went down. After my surgery I had one undetectably PSA test, but then it started to creep up. The next line of treatment is typically radiation; but the million $ question is at what point you should pull the trigger and initiate radiation. Too soon and you may treat unnecessarily. Too late and you may lose the opportunity. Some say that you should not even wait for PSA to begin rising and just wait until you heal up before starting radiation. Others say wait until it reaches 0.2, and then go for it. In my case I waited until it hit 0.05. It's been 3 years and I'm fine. I don't mean to be unnecessarily gloomy, but these are questions you need to think about.

Hey Dave: Welcome to the forum, lots of good folks here to help u out. Given your post-op pathology ( G9 and +LN) u are actually doing rather well. U have had 4 tests and so far remain undetectable. That is pretty darn good. Standing in your shoes, and I have been there, I would be pro-active and plan my next move now. I would be speaking with a RO and getting my ducks in a row. The chances of u remaining undetectable are probably not very good, but the chance u may have to beat this forever could be staring at u right this minute. Be aggressive and get in the front of this, G9 is no joke. Good luck to u....MM

Hello Dave,

I had the similar surprise of G7 -> G9 after surgery over 2 years ago. Does not feel good and wrecks the plans you had going into surgery. Rather than being happy the cancer is out, you slide back to worrying about what to do.

I had the risk factors of extraprostatic extension (EPE) and a small positive margin at that location. You have some involvement of the lymph nodes. I chose to go with preemptive adjuvant radiation (ARTj at 5 months with non detectable PSA. It was statistically better to hit it early than wait when you are dealt a bad hand.

Djin and others are telling you the right things. Provide a little more data and we might be able to help more. There as some things you can be doing like seeing a radiation oncologist (RO) and get their take on your situation.

Nothing is going to happen to you quickly as prostate cancer typically does not work that way. It is usually painless so lack of symptoms doesn’t mean much. Try to relax and start working through this situation. You will get a lot of help and free advice here.

Dave,

The diagnosis stinks and was a bad surprise for sure but in some ways you were very lucky. There are far to many young men who never find out until it has already spread to the bones and they have a much more difficult situation to deal with. Hopefully you recovered from the surgery ok. What a time to have to deal with this!

In terms of dealing with it, you simply have to do what must be done. Do not put your head in the sand. Respect it. Keep up with prostate cancer news/treatments. Hopefully the pandemic will be manageable soon and local support groups will start meeting again.

As others have said, since they pulled some nodes out that were positive you should be talking to a medical oncologist who knows their stuff about prostate cancer. Based on your intro at this point I would suspect many would be recommending some form of hormone therapy along with radiation to the pelvis. Are you already on hormone therapy? Are your psa tests the "ultrasensitive" kind?

Welcome Dave,

G9, T3a, N1.........High Risk. Get another assessment by a real PCa specialist that deals with a lot of high risk so that it doesn’t become advanced stage and life threatening.

I am surprised you are not on ADT and discussing radiation therapy. As others have said, get prepared. With your diagnosis and pathology, few men get long term success from surgery alone. I hope you do, but hope is not a plan. If you were 86 with heart problems it would be different. But, as you say, you are young and healthy. Learn more and develop a plan.

I trust your doctor has walked you through the nomograms at John’s Hopkins and Memorial Sloan Kettering websites. If not, shame on your doctor. You should put your information in and learn what the probabilities of recurrence are. It is not definitive but can provide you with useful information.

I agree with others that you should be consulting a very experienced PCa oriented medical oncologist and radiation oncologist. Getting assessments doesn’t mean you have to treat yet, but then you might find that you should as a few members have n[mentioned. At this point, your surgeon’s job is basically done.

First off, thank you to everyone who responded. Here is some more information.
I had my surgery at Memorial Sloan Kettering (MSK) in NY City on April 28, 2020. My doctor was Dr Karim Touijer.

I discussed both hormone/radiation or surgery before I was convinced to head down the surgery path primarily due to my age, volume of tumor, and the fact that hormone/radiation would be a very good option post surgery if there was a reoccurrence.
My surgeon/MSK believes the proper SOC would be to wait to see when their is uptick in PSA before starting hormones/radiation. We discussed reoccurrence %'s, given the pathology (~60% chance of reoccurrence in 5 yrs). Based on what I've heard about the hormones impact on the body, I was kind of happy with that. I am being tested every 3 mths (next test March 17th). It seems like a lot of you were advised/decided to start hormone/radiation. Looks like by waiting, I may be in the minority.

Surgery Recovery: I spent one night in the hospital and was discharged the next day. The catheter was an experience that I could have done without. I was back working the day after I came home. It was easy since we were in the middle of the pandemic and everyone was working remotely. I had no incontinence or ED issues before I had surgery. I had no incontinence issues from the time I took the catheter out. On the ED front, it's been a bit more challenging. If there was one issue that I've been dealing since surgery, it's been having bowel movements. Without taking Miralax, I can go 2-3 days without going and then it's not a fun experience. Seems like I lost the ability to contract down at the bottom of my colon...... My doctor and my GI doctor both said they don't feel that it's related. All I know is that it started post surgery.

All in all I feel lucky as Stephen S said, too many people don't find out until it's spread to other parts of body. As my primary doctor said, "Dave, you are the poster child for why men who are 50 should have their PSA tested. No symptoms, no family history."

Research......... the good news, there is so much out there. The bad news, there is so much out there. You read one study and feel like, "ok, we've got this, then read another and feel like WTH....."

I'm glad I found this forum. I rather be able to talk to folks who are going through the same and hear what they've been told and what they've experienced. Thank you again for all of the input.

Dave

Dave’68 said...
Research......... the good news, there is so much out there. The bad news, there is so much out there. You read one study and feel like, "ok, we've got this, then read another and feel like WTH....."

The other challenge us younger guys have is much of the research is based on older guys. Younger guys are in the minority for filling in slots in various clinical trials because PCa picks on older guys. Your time horizon is 30/40 years.You are not going to find any research that addresses that.

The advice I would give is
1) you are not a Dr. You are an informed patient. Your job is to find a Dr/team that you trust. You bring your questions to your trusted Dr/team.

2) Once you make a decision thats about all you can do. Dont beat yourself up over “what ifs”.

3) When reading various papers, dont bother with papers that speak to something that is not applicable to your past.

It seems you are immersing yourself in PCa. That is a good thing. You are becoming an informed patient.

Dave'68 said...
Based on what I've heard about the hormones impact on the body, I was kind of happy with that.

Yes I get that! That was the exact reason why I went with surgery initially. However I wanted to say that hormone therapy is manageable. The intent at this stage would be its use for a period of time, not forever. It would have an end date. I went through 7 months of it, and knowing there was an end date helped tremendously.

Also....in my case if I regularly exercised I was able to beat the worst of the side effects. For example I never had a hot flash or sweats, but that meant 30-40 minutes a day in the gym. Walking etc... Having said that there are none to few guys that it hits pretty hard, so your mileage may vary. It is beatable though.

To Motown Paul, MichiganMan16--that's the coolest part of this forum--when you can manage a f2f meeting with another member. Much, much better than doing it online. Comparing notes...and enjoying each other's company--you'll find, even at a first meeting, so much to talk about. Like you've known each other for years.

JNF Well for starters this a place we share stories so I thought this guys story was pretty amazing . mycancerstory.rocks He takes it with curcumin read the whole story or at least go down to his October 2018 blog I saw three cases where is stopped the metastasized prostate cancer I agree it PCa is a slow cancer and this may work on a faster growing cancer but if we slow it down that might be good .John Hopkins did a study too . I am having my prostate removed in the morning . The last thing I want to do is spread false hope here. But I read earlier someone on here saying they are giving up and are gonna resort to CBD oil . BTW We don't deworm dogs all of their lives grinning as I type . Wish me well tomorrow 23rd at 12:15
Jimmy

Hi Dave68,
Great advice from the crew above. Sorry you have to be here, but here are a couple of long posts for you to check out:
Link to "Letters to the Newly Diagnosed"
https://www.healingwell.com/community/default.aspx?f=35&m=3675218#gsc.tab=0

Link to: "Gleason 9 crew, How ya Doin"'
https://www.healingwell.com/community/default.aspx?f=35&m=4105098#gsc.tab=0

As always, keep the faith,
Wings (my e-mail is in my profile)

Post Edited (Wings of Eagles) : 2/23/2021 10:25:09 AM (GMT-7)