Welcome. Sounds like you are a fighter and that will come in handy. We have several G9 guys that have done well. There is a specific G9 thread I suggest you read through.

In a few weeks you will know more about future treatment. Based on your risk profile I would start researching the specialists in your area that you might need like radiation and medical oncology. Basically after recovery the surgeon’s job is done. If there still is cancer the surgeon couldn’t excuse them you will need the other relevant specialists.

Most importantly for now concentrate on healing from the surgery and prepare yourself both physically and mentally for potentially more work.

Hershey, welcome to our club that none of us chose to join. Now that you're here--your job 1 is to get back in shape as best you can. They can't start secondary treatment for a few months--take that time to get back in healthy shape. Walk a lot, eat well.

A key point will happen in a few weeks when you get your first PSA. It should be a lot lower than before--but it may not be zero. At three months, you should (if the surgery was successful) have a PSA with a "<" in front of it.

As JNF suggested, get appointments with a radiation oncologist and a medical oncologist--even better if they specialize in prostate cancer. At least get there, get your records in, and have a consult. Let us know what they say. When you get your written pathology report, put it all in a post, and we can help translate.

Hang in there--it's not the end of the world.

Hersheybar - Not the best news but you already know that. I had to wait for the 2nd expert opinion to get my G9 upgrade. I was 10 years older and it does not sound any better at 66 so I can imagine how you feel right now.

If you follow something similar to my protocol, you will see doctor at 3 weeks and he will tell you to work on recovery and wait for the 3 month PSA results and will address any future treatment at that time (with spouse). Some people get PSA's at shorter intervals but I don't see the point. Maybe it is non-detectable, maybe it is not. Just more stuff to worry about in my opinion when at 3 months post-op, you are then about ready to address the issue with the PSA at that time. I did schedule a visit with the RO that I previously saw for the week after the 3 month visit with urologist since I knew that was on the agenda.

Couple of things I might suggest if you are not doing them already while you are killing time looking up every study on high risk patients, adjuvant radiation vs. early salvage radiation, and if you need hormonal therapy or not.
• Have your urologist contact pathology and get a sample of your cancer tissue sent for Decipher genomic testing to acquire that assessment. You want to have as much info as possible for making decisions in a few months.
• Consider having the pathology slides sent to J. Epstein's group at Johns Hopkins for 2nd opinion review. I doubt it will make a difference in the future treatment but you may feel better knowing you have checked this important part of the prostate evaluation.

I would think that there are good radiation oncologists (RO) and medical oncologists (MO) at OHSU that are experienced with prostate treatment. If not or you don't like them, you can ask around and find some other doctors to see. Since it is likely that radiation is in your future, you may want to assess the distance from OHSU to your home. It is usually a couple of months of daily treatments so there may be a facility that is closer assuming you are still working, etc.

Your mind will be spinning for a couple of months but it will start making more sense when you get to the 3 month mark and you have a plan going forward from then. Good luck with your recovery,

Hi BeaverDuck - I’d be happy to share any & everything about my experience with Dr. Amling, feel free to DM me anytime. The short version, he’s as good as I could find. Feeling uncertain about my original urologist, I pulled the plug, spoke to several other Uros and then past customers of his who had the means to go anywhere in the world, they chose Chris. Very skilled surgeon, with an amazing team.

beaverduck said...
Welcome Hershey,
Sorry for the recent news you've received. I'm pulling for you and this site is the right place to be.
The real pros around here will be chiming in soon, im sure.

I am very interested in your case. As you can see from my signature, i'm scheduled to have surgery with Dr. Amling in mid-Feb. I'm not sure what the correct forum to discuss this in is but i'm really eager to hear how things went for you at OHSU. Let me know if we can email or DM at some point.

Best to you,
BD

Hi Mumbo - great advice on the additional reviews, thank you for that. As to the looming protocol, spot on give or take a week on the scheduling they have lined out. I had my PSA down to 5.91 and falling pre-surgery, most interested to see where it lands at 12w.

Mumbo said...
Hersheybar - Not the best news but you already know that. I had to wait for the 2nd expert opinion to get my G9 upgrade. I was 10 years older and it does not sound any better at 66 so I can imagine how you feel right now.

If you follow something similar to my protocol, you will see doctor at 3 weeks and he will tell you to work on recovery and wait for the 3 month PSA results and will address any future treatment at that time (with spouse). Some people get PSA's at shorter intervals but I don't see the point. Maybe it is non-detectable, maybe it is not. Just more stuff to worry about in my opinion when at 3 months post-op, you are then about ready to address the issue with the PSA at that time. I did schedule a visit with the RO that I previously saw for the week after the 3 month visit with urologist since I knew that was on the agenda.

Couple of things I might suggest if you are not doing them already while you are killing time looking up every study on high risk patients, adjuvant radiation vs. early salvage radiation, and if you need hormonal therapy or not.
• Have your urologist contact pathology and get a sample of your cancer tissue sent for Decipher genomic testing to acquire that assessment. You want to have as much info as possible for making decisions in a few months.
• Consider having the pathology slides sent to J. Epstein's group at Johns Hopkins for 2nd opinion review. I doubt it will make a difference in the future treatment but you may feel better knowing you have checked this important part of the prostate evaluation.

I would think that there are good radiation oncologists (RO) and medical oncologists (MO) at OHSU that are experienced with prostate treatment. If not or you don't like them, you can ask around and find some other doctors to see. Since it is likely that radiation is in your future, you may want to assess the distance from OHSU to your home. It is usually a couple of months of daily treatments so there may be a facility that is closer assuming you are still working, etc.

Your mind will be spinning for a couple of months but it will start making more sense when you get to the 3 month mark and you have a plan going forward from then. Good luck with your recovery,

Hello Hershey. Not much to add, other than I’m looking at myself when reading your story. Very similar, less the positive LN. It’s been a long road, but I’m doing ok. Please let me know how I can help. Best, MM

Hersheybar, nothing to add, just want to add my welcome, as unfortunate as the circumstances may be. You've got lots of company in the G9 club here, so it's a chance to really use us as a resource for both support and knowledge.
P.S. Your screen name is making me hungry. ;-)

@Redwing.......Jerry, its great to see you posting. Sad time for us all here, somehow though, i feel like it helps having you here.

Mumbo said...
Djin, MM - I read his signature over a number of times. I think he might have been saying “One positive (thing), (all) 10 lymph nodes removed were all clear”. I may be wrong but got the impression that was the only good news in the pathology.

Funny you posted that -- I was just rereading his path notes, and I think you are correct. Yes, it is a spot of good news. But with all the adverse findings plus bladder neck invasion, my hunch is that the advice will be to get an earlier start to adjuvant therapy rather than allowing the healing time you would like to have. If this were me, I would want to have the input of a multidisciplinary team at a prostate center of excellence. BTW, Hersheybar's path staging is missing from his sig, pT3b pN0, I assume, if all nodes were negative. I'd be curious to learn his PSA history and what led to the biopsy.

Djin

Hershey,
I know you have a lot on your plate so no rush..... but when you can, change your profile so i can see your email and i'll send my contact info. Would love to talk OHSU and maybe cowlitz steelhead or whatever else you do for fun.
Best to you, BD

Hi Redwing - I’ll definitely look into Peters case. To your question on path... it’s a 4+5 and yes, it was post surgery pathology. 70% 4 & 15% 5. IDC Present and Tumor Quantitation was 40%, whatever that means.

Redwing57 said...
Sorry to hear of that upgrade from surgery, that is a shock indeed. I was 55 when diagnosed, and have some idea how difficult it is to hear this so "young".

Our fellow forum member Peter DisAbelard had a similar upgrade from surgery. I suggest looking him up, and perhaps he'll be along to comment here.

The G9 came from pathology, right? What was the score? 4+5, or 5+4? That matters some, but not a lot. You'll be looking at more treatment to get ahead of this. Our G9 cases are worthy of about everything we can throw at them.

This forum has a lot of helpful people. Feel free to ask questions, vent, whatever helps. We're all here to help each other.

Hi Djin - you and Mumbo are correct, the nodes themselves were all clear. The Lymphovascular shows present. I’m still not sure what that means as this is all new lingo for me. Also, you are spot on with respect to staging, I am pT3B pNO. I’ll revisit my signature and try to clean things up. Thank you for reaching out.

DjinTonic said...

Mumbo said...
Djin, MM - I read his signature over a number of times. I think he might have been saying “One positive (thing), (all) 10 lymph nodes removed were all clear”. I may be wrong but got the impression that was the only good news in the pathology.

Funny you posted that -- I was just rereading his path notes, and I think you are correct. Yes, it is a spot of good news. But with all the adverse findings plus bladder neck invasion, my hunch is that the advice will be to get an earlier start to adjuvant therapy rather than allowing the healing time you would like to have. If this were me, I would want to have the input of a multidisciplinary team at a prostate center of excellence. BTW, Hersheybar's path staging is missing from his sig, pT3b pN0, I assume, if all nodes were negative. I'd be curious to learn his PSA history and what led to the biopsy.

Djin

Change made, look forward to hearing from you.

beaverduck said...
Hershey,
I know you have a lot on your plate so no rush..... but when you can, change your profile so i can see your email and i'll send my contact info. Would love to talk OHSU and maybe cowlitz steelhead or whatever else you do for fun.
Best to you, BD