Newly diagnosed...and confused

I was diagnosed with PC yesterday. From what I have read here and elsewhere, it seems that some of my results are somewhat contradictory so I hope that the group here may be able to help me sort it all out. I apologize upfront if this gets a little long.

I'm 66 and overweight but otherwise in very good health - or so I thought. I have no other medical issues and take no prescription meds of any kind. For some reason that I really can't explain I decided on a whim about 6 weeks ago to get a full physical exam. I haven't had one for probably six years so I guess I just decided it was time. I don't even have a PCP so I booked an appointment with my wife's.

All was fine including the DRE which was negative. However, my PSA came back at 9.4. The PCP thought it was likely an error so she drew more blood and ran it again. Turns out it was wrong as the new one came back at 9.9. She immediately referred me to a Uro and I was able to pretty quickly get an appointment. He ran some of the same tests plus a urocuff and got the same answers. The decision was made to do a biopsy largely because of the high PSA so that was scheduled for last Tuesday.

I've read some of the comments about the biopsy being uncomfortable and somerimes even paimful so, of course, I was worried about that. When the time came they rolled me into the surgical room and knocked me complerely out with Propofol (sp?) so I didn't feel a thing. From my research, it seems that was a little unusual?

I got the results back yesteraday and again, it was a mixedd bag. The short version is that I was confirmed with PC but only three of the twelve needles positive. That should be relatively good news, right? The problem is that all Gleason scores were 10. Here are the specifics from the report:
Left lateral base: Adenocarcinoma - Gleason 5+5=10, core involvement 50% (7mm)
Left base: - Adenocarcinoma - Gleason 5+5=10, core involvement 20% (3mm)
Right Base - Adenocarcinoma, Geason 5+5=10, Core involvement 10% (2mm)
All other cores were benign
There was also an amendment stating that the Gleason score was still 10 but with perineural invasion. It doesn't specify which, or all samples, showed this result.
There is further comment about part 7 (which I read to be the Right Base test) that "PSA and P501 stains are performed with adequate controls due to the extent of high grade carcinaoma. Both stains are positive supportinng a prstatic orign.
There is some other information but I don't see a T score.

I guess my confusion is from some of the reading I have done. It seems that a Gleason of 10 would likely have a PSA in excess of 9.9 and, conversely, a PSA of 9.9 would likely have a Gleasom score well below 10.


I am scheduled for both a bone scan and an MRI next week. Again, my reading suggests that they may not be needed but I am going to check them off the list anyway. There has been no discussion of radiation or any other type of treatment exceopt surgery. This actually seema logical to me. My best assessment right now is that I a relatively small but aggressive tumor so getting tid if it makes sense.


I have read that the surgeons experience with robotic surgery can be very imporatnt so I asked the question. It turns out that my PCP referred me to someone who specoalizes in exactly this kind of case. He has been doing robot surgery for years and, in fact, was actually an instructor on the equipment and process for other Doctors. I and my wife are both very comfortable with him. Although not presently scheduled, surgery will likely be the first week of December.


I would love to get comments and thoghts from others on the forum on what seem, to me at least, to be unusual test results. Thanks

Sorry you had that biopsy result. With a gleason 10, you need to educate yourself. Typically radiation is a better option than surgery for high risk cases.

A Consult with a radiation specialist is in order, and possibly starting meds asap, while you get this figured out

Sorry about your diagnosis, but super glad you decided to get a physical. As I'm sure you know, G10 is a serious diagnosis. But to that point, I strongly urge you to get a second opinion on your biopsy slides to make sure you really are a G10. You can have them sent to Epstein's lab at Johns Hopkins...the uro can have that done and it's generally covered by insurance. Now if you're re-classified as a G9, it probably wouldn't make a difference in your diagnosis, but I would still urge you to get this done.

Regarding treatment, please don't jump toward surgery until you've checked out other options. While it may make sense to cut the cancer out of your body, the higher risk Gleason scores are more prone to spread and radiation can treat a wider area. Also, a lot of high Gleason surgery guys need to have radiation as a follow-up. It could make sense just to skip the surgery and move to radiation. That said, you would need to talk to a radiation oncologist about that...keep in mind that uros are surgeons and it's rare for them to bring up the idea of having radiation. (When your only tool is a hammer, everything looks like a nail.) Also, after talking to an RO or two, if you decide you really want surgery, then you'll know you've done your due diligence up front.

Good luck with your scans--they actually are important for higher risk diagnoses. If they don't show anything, then you're positioned for a cure. Let us know how that goes. And let us know how we can help. Even guys with high risk diagnoses can do okay and you can too.

https://prostatecancerinfolink.net/2018/07/11/the-best-therapy-for-gleason-10-prostate-cancer/

Hello Randy and welcome. Sorry you have to be here but as you can see this is a caring community filled with knowledgeable folks. You have already received some excellent advice that I will summarize:

1. Get your slide re-read by Dr. Epstein at JHU.

2. Get yourself to an experienced RO ASAP. As you can see from the link provided by Gary, "brachy boost therapy" is most likely a better choice for you than surgery. At the very least you need to get an understanding of that option before you pull the trigger on anything.

Also, if you let us know where you live some of us may be able to recommend some experienced docs who can help you thru this.

Good luck and stick with us.

Jim

Just re-read everything posted. We live near Atlanta. Any leads to good RO's here would be appreciated.

Thanks again to all.

Randyd - I live in Atlanta and I am just finishing up my treatment for prostate cancer. After doing my research, I chose a combination of external radiation (IMRT) and internal radiation (HDR brachytherapy) instead of surgery. I consulted at Wellstar, John Hopkins, Emory and Atlanta Oncology Associates in Alpharetta. I decided on Atlanta Oncology based on their many years of experience as a high volume center for HDR brachytherapy. Several other guys on the board have also used Atlanta Oncology. I am sure they will be on shortly to share their thoughts. If you would like to discuss in more detail or I can help in any way, please let me know - regards Mike

One of the most knowledgable guys here is JNF...he was a high-risk diagnosis that's doing very well and he lives in Atlanta. He'll give you some leads and a ton of direction--I'm sure he'll weigh in soon.

You mentioned the # of positive cores...while 3 of 12 is a good percentage, the fact that they are G10 is the over-riding part of the diagnosis. That said, even high risk guys can do well. As in really, really well. I think the second opinion from Epstein will be key in telling you if you're really G10 or (hopefully) something less. Reading the biopsy slides is more an art than a science...Epstein's lab ONLY does PCa slides so they have more expertise than others.The scans are also important, although you should know that the bone scan will show every nick and injury you've had your whole life so don't be freaked out by every spot out there.

Last point: you're in a major city and as long as your insurance will cover it, go for the best possible doctors--if there's a world class guy at a university, there's nothing stopping you from seeing him or her.

Emory is first rate. It would be top of my list if I lived there.

This whole PC can be a kick in the head and will require some adjustment.

Ask all the questions you want - we're here most days.

Keep us posted on your progress,
Andrew

Randy, I'll add my welcome to our club that none of us chose. I would also add my agreement to the major recommendations:

1. Have your slides sent to Johns Hopkins for a second read, it may give a clearer picture--but G10 (or even a downgrade to G9 is still a serious situation)
2. Get yourself to Emory or some of the other major sites mentioned and get in with some experienced RO's.

Smaller suggestions, but ultimately very helpful going forward:

Get a legal size accordion folder and take it to all appointments, and put copies of all your paper/scan CD's, etc in it.
Add a notebook and pen to the folder, and use it to write down your questions and the answers you get.
Take your wife to your appointments, and maybe have her take notes and ask her own questions.

You're going to feel like you're drinking from a firehose for a while. Lots of information will be coming your way.

Radiation therapy, especially for high risk cases, comes in multiple flavors, if you will. You'll have a lot of jargon to learn. Probably for you, they will propose a combo therapy, that may include ADT (hormone therapy), internal radiation (seeds) and external radiation to the pelvis.

Get the CT and bone scans done. Don't schedule any additional treatment until after that. Your uro, or whomever else you meet may put you on ADT immediately--that isn't a bad thing, it will stop any progression in it's tracks while you figure out the next moves. Also, there are a lot of guys in here with extensive G9 and G10 cases who are still kicking years after diagnosis. You have every chance of living out a full lifespan.

Welcome to our forum, sorry you need to be here but glad you found us.

The guys have already given you a lot of good advice. There aren't many G10 cases, so the info you can find online is limited. They get lumped into other situations, blended into a "high risk" group just to get enough cases for the studies to draw some conclusions. If you find studies that separate out the G9/10 folks, and particularly the ones with "Primary Type 5" cells (G9 5+4, and G10 which is 5+5), they'll indicate the most aggressive treatment plans are appropriate. Generally multiple-treatment protocols are used. This forum is a good place to discuss what your doctors are saying, and to learn some things that you might want to ask your doctors about. We're all just a bunch of folks with this disease in its various forms, and we're here to share our experiences and support you however we can. We're here for you!

We have a thread for those of us with G9/10 situations, the "G9 (and 10) Crew". In that thread there's a roster of a lot of guys with similar situations, and links to their first posts. With that, you can follow the discussions many before you in similar situations have had. You'll also perhaps find some comfort seeing that so many are doing very well even with this diagnosis. It's set up in 3 groups, G10, G9 5+4, and G9 4+5, listed by diagnosis date within each group.

Here's a link to that thread:
The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

Randy....
I'm a G9 and my PSA was just 5.2 and I had 6 positive out of 16.
As mentioned above the No's don't always jive, PCA tends to have it's own rules sometime....
We are the same age 66, I opted out of surgery because I did not want to have SE from surgery and Radiation....My URO said if I was 10 years younger he would push the surgery....
My attack plan is IGRT/IMRT and 2 years of HT....
And I'm really happy you found HW, your with family now, I know I learned a ton on this forum....
Keep your head up and may God Bless....

Post Edited (MG0351) : 10/25/2018 1:30:13 PM (GMT-6)

Thanks again to all who have posted here for your encouragement and your information. I have read all of the posted links and appreciate it all. When I left the Uro's office I had pretty much committed myself to surgery as the best option. Now, although the jury is still out, I am more inclined to go the other direction.

Scans scheduled for next week although today there was confusion over whether I was to get an MRI or a CT. The Uro requested CT and the hospital scheduled MRI. I don't really care which as long as it gets what the doc needs. I am working with Uro to get the biopsy slides sent to Dr. Epstein at Johns Hopkins. The more I look at my report the, more questions I have. It is listed as an amended report with the perineural invasion added after. It seems sloppy and just raises questions about all of it for me.

I was asked for more details on the biopsy, there really isn't a lot more. It doesn't really list a clinical stage - it lists three. T1c non palpable, T2a palpable <1/2 lobe and T2b,c > 1/2 lobe, bilat. I'm probably wrong but guessing that is a rating for each of the 3 positive cores? It also lists - total % cancer 5%, total length of cancer 12mm, longest tumor in single core 7mm. That all doesn't mean much to me right now but I suspect it will to most of you.

Thanks to all of the great advice here, I have asked both my Uro and my PCP for recommendations for an RO and will absolutely do one or more consults in the area before a treatment decision is made.

I also went through the entire Gleason 9 Gang thread and discovered that I appear to be the only G10 added for the entire year. Not sure that's an honor to be proud of. No offense meant but it came as a hell of a shock to learn how rare us G10's are. Kind of depressed right now. I will likely begin posting there.

Thanks again to all.